What's Up With the Doc?

Our beloved Lisa

2010-01-21T09:03:00.003-05:00

My beloved wife Lisa Woody, MD, passed away on Monday, January 18, in the Connecticut Hospice facility in Branford. It is fitting that she was released from further suffering on the day we celebrate Dr. King ("Free at last, free at last, thank God almighty, I'm free at last.) Should readers of her blog need more information they can contact me, her late husband, at the e-mail address given below. I can also be reached via snail mail at my new address:
1425 NE 7th Ave.
Apt. 341
Portland, OR 97232
Phone 503-719-4876
Cell 210-422-4424

Thank you all for loving her.

Robert O. McAlister
romca@aol.com

Obituary:

Lisa Ellen Woody, 51, of Guilford, beloved wife of Robert O. McAlister, passed away January 18, 2010 after a 22-month battle with lung cancer. She was born June 20, 1958 in Huntsville, AL, the daughter of Marta Medaris Smith of Sun City West, AZ and Charles Kenyon Woody of Annapolis, MD. Lisa was a 1976 graduate of Highland High School in Albuquerque, NM; received a BS in Chemistry from Southern Methodist University in 1979 and her MD from the University of Texas Southwestern Medical School in 1983. She completed an Internal Medicine residency at the University of New Mexico Affiliated Hospitals in 1987 and practiced internal medicine for four years before changing her focus to acute care and occupational medicine. She obtained her MPH from the Medical College of Wisconsin in 1996 and her board certification in occupational medicine in 1997. She practiced at the William W. Backus Hospital in Norwich, Connecticut from 1992 – 1998 and 2006 – 200_. She practiced at the Loyola University Medical Center in Maywood, Illinois from 1998 – 2006. Lisa loved the mountains where she felt the grandeur and peace of nature were most profoundly expressed and where she was always able to achieve communion with her beloved brother, Bruce Kenyon Woody, both before and after his death. She loved micromanaging her children’s lives, quilts, quilting, baseball, and flowers of all kinds, wild and cultivated (but never indoors, where they inevitably became cat food). In addition to her husband, she is survived by her mother and stepfather Marta Medaris and Charles Smith of Sun City West, AZ; her father and stepmother Charles and Katherine Woody of Annapolis, MD; her children Lindsay Thomas (Jacob Kramer) of New York, NY, Emma Thomas of Ft. Collins, CO, Hannah Thomas of Guilford, CT and Philip Thomas of Guilford, CT; her stepchildren Isaac McAlister of Fort Stewart, GA, Ian (Resa) McAlister of San Antonio, TX and Kaitlin McAlister of Sisters, OR; her sister Faith Myers (Bruce Amos) of Albuquerque, NM; her brother Christopher Woody (Sheri) of Ft. Collins, CO; her stepbrothers Randall Smith (Kimberly) of Arvada, CO, Christopher Smith (Debbie) of Kingsland,TX, William Woody (Beth) of Missoula, MT, Murray Woody (Ruth) of Frankfurt, Germany, Greer Woody (Deborah) of Missoula, MT; her stepsisters Tanis Stewart (Brian) of Reston,VA and Merodie Hancock of Mt. Pleasant, MI; and with a combined 176 years of lifelong friendship, the four women who pushed, dragged, lifted and carried her through her life: Claudia Mora (Los Alamos, NM), Joanne Descher (St. Louis, MO), Lynn Laceky Ward (Dallas, TX) and Cynthia Fowler (Wake Forest, NC) as well as numerous aunts, uncles, nieces, nephews and cousins. The family would like to thank the administration, employees, and medical staff of the William W. Backus hospital who were so supportive of Lisa during her illness. A celebration of her life will be held at St. David’s Episcopal Church, Rts. 12 & 214, Gales Ferry, CT on February 27 at 11 am with the Rev. David Cannon officiating. Friends of Lisa’s children may call on them at 1310 Alexander Dr. in Guilford on February 27 from 1 pm to 5 pm. In lieu of flowers, donations in her memory may be made to the National Lung Cancer Partnership, 222 N. Midvale Rd, Suite 6, Madison, WI 53705 (or online at www.nationallungcancerpartnership.org) or to the Backus Foundation, 326 Washington St, Norwich, CT 06360 (or online at www.backushospital.org/foundation).

What's Up With the Doc 85? - Hospice is a Wonderful Thing

2009-12-10T11:07:00.000-05:00

I had another miserable day yesterday that Hospice somehow managed to turn around. No pain. Nausea and abdominal distention and fullness as well as overwhelming weakness are my nemeses. I'm not doing very well with the transition from very active to almost completely inactive. I generally don't even have the energy to work on Emma's quilt most days, which makes the chances of finishing it pretty slim - also depressing. We saw both the Hospice social worker and my nurse yesterday and today there is a brand new hospital bed in the family room, ready for when I no longer feel capable of making the trip upstairs for bed.

I'm currently ensconced in my recliner with Philip's laptop, which has a new keyboard and battery so it can easily move back and forth between his room and the family room. I feel like this will cheer me up, this internet access without having to sit up in a chair.

One thing about staring impending death down is that it has inspired me to get holiday preparations taken care of much more efficiently than usual. No tree this year, which is weird, but the family room is full of greens and poinsettias and stockings and looks very festive.

Even with the equipment delivery this morning, I feel better today, so far, than yesterday. Let's just keep hoping for more of that.

Lisa

What's Up With the Doc 84? - The Overwhelms

2009-11-30T15:02:00.000-05:00

Sorry to be so long away, but it's been a crazy couple of weeks. My energy level continues to decline and resulted in a rather precipitous decision to start my total disability at work last Tuesday. While driving isn't painful, it does seem to take it out of me to drive an hour to work and back and was leaving me little reserve to do anything meaningful. So now I am on total disability. Robert went today to pick up my personal items from work and to drop off pagers, phone and badges. Much paperwork was required - paperwork for the FMLA, paperwork to start a long term disability claim, paperwork for social security. That took up quite a bit of time and energy last week and especially Saturday morning, when I finished the Social Security application. I also saw the oncologist for Zometa on Tuesday and, while we agreed to stop Gemzar, we decided not to do a Hospice referral until I need "help" at home, whatever that is. More on that later.

Emma got in during the wee hours on Tuesday. Lindsay came up later that day and the cooking began Wednesday with turkey stock, cranberry dressing, cornbread for stuffing and desserts. Thursday I sat in the recliner and watched Lindsay and Emma, with help from Hannah, put together one of the very best Thanksgiving meals I have ever had the pleasure to enjoy. Not only was the food great, there were no dustups of any kind and an early meal meant early cleanup and getting to bed at a reasonable time.

Friday I slept in and spent the day with Emma - she studying physiology while I worked a little on her quilt. Her father picked her up at 3:30 am Saturday to head for an early flight and once I got up I hit the Social Security website. I can only imagine that it was sitting in the chair at the computer for all those hours that resulted in the remarkable increase in pain I experienced by Saturday evening. Nothing specific. Nothing I could point to as something new. Nothing to say I had an infection or fracture or anything I could think of except all that sitting.

I was not much better on Sunday except that by the afternoon the pain had localized to my left mid back - a new spot for me. I called the doctor on call and we increased my pain meds by 50% and agreed that I would avoid the emergency department unless something new or different happened. So this morning I was on the phone to the oncologist's office first thing for more pain meds and the Hospice referral. They will be out Wednesday and I am looking forward to relaxing into their fine, always available, supportive care.

Today I feel better from the pain standpoint, although a bit high with the increased dose. That's unusual for me and I don't like it much, but I'm sure I'll adjust. I'm pretty sure Hospice will be changing my meds, anyway, so here's hoping for a smooth transition to the next phase of this disease.

I hope you all had as happy a Thanksgiving as I did with my family and ate as well.

What's Up With the Doc 83? - Searching for Some Energy

2009-11-16T14:16:00.001-05:00

That's about it as far as what's up with me this week. Robert and I had a lovely trip to Long Island where the food and conversation were excellent. We lost at bridge but had a great time playing. Mostly, I just feel like someone hooked a shop vac up to me somewhere and sucked every bit of energy out of me. I'm not tired - it's not sleep I need - I just can't even describe what it takes out of me to walk across the room, much less climb a single flight of stairs. I've decided to forego that last chemo treatment on December 1st before the scan scheduled on the 8th because I can't conceive of or bear the thought of this getting any worse.

I know I keep saying this and then putting it off, but I suspect that with scan results in hand, both disability and Hospice will be fully in place before the end of the year. And for the first time throughout this entire process, I'm angry and sad at the same time. I want to feel better than I do. I want to be able to do more with whatever time I have left than sit in my wonderful recliner or lie in bed hoping for strength.

This week I have no cancer-related treatments. Next week I get Zometa only and it's Thanksgiving! Emma gets in Monday and the festivities will begin in earnest. I'll take the following week off and then have the scan on the 8th and we'll see what that shows. Until then, all I can do is take this one day at a time, do what I can do and be gentle with myself.

Lisa

What's Up With the Doc 82? - Up With Steroids

2009-11-09T16:37:00.001-05:00

I wish I could say that I understand this roller coaster, but I don't. Last Tuesday I increased my pain meds and decreased my steroids. I was feeling more generally not well than usual, which usually calls for an increase in pain meds. By Thursday I was feeling a bit better overall and had decent days Friday and Saturday. Then at 2:30 am on Sunday the hammer fell and I woke up with really severe pain everywhere I've ever had pain. I took oxycodone every couple of hours until I could get back to sleep and then spent Sunday doing absolutely nothing except lying in the recliner watching TV. I increased my steroid dose back to the highest dose I've been on and the pain is now firmly under control. Nausea required treatment on Sunday, but none since. And I'm weak as a kitten - now having to rest while making the bed in the morning.

Getting to and from work is still OK so I'm still doing that and what I do at work isn't the least physically challenging as long as there is a handicapped spot close to wherever my meeting or office for the day is. So I'm still doing that but don't expect that to continue much beyond the end of November. Now I'm starting to think about the total disability red tape and getting myself organized for that next step in this journey.

Thanksgiving is fast approaching. I think I have the menu finalized and the turkey ordered. I've never ordered from this place before and they haven't confirmed my order yet, but a quick internet look see would indicate that that's par for the course for this local fresh turkey farm so we should be fine.

Applications are in for Hannah and Emma's next educational round and they are in the no fun waiting period. Lindsay is starting work on her applications for her next round and loving every minute of the process - not. She and Jacob were up for the weekend. Great food and good fun were had by all. This weekend Robert and I are headed for Long Island to have dinner and hopefully some bridge with my cousin and her husband.

Tomorrow is the oncologist and more chemo so think gentle thoughts for how it decides to treat me this week.

What's Up With the Doc 81? - A Little Down

2009-10-30T12:10:00.001-04:00

After an absolutely delightful trip to New Mexico I returned to my real life in Connecticut on Monday. I saw the oncologist for Gemzar and Zometa on Tuesday and have had no real problems as a result, but my fatigue level is getting worse and worse. I don't know whether it was the travel, the slightly lower steroid dose, the chemo, or a combination of all three, but I'm having trouble getting myself up and at 'em in the morning and by the time I get home from whatever small amount of time I spend at work I collapse into the recliner and don't generally move except for dinner. My pain level is also increasing and I'll have to raise the Oxycontin dose with the next refill and I'm noticing swelling in my feet and ankles and abdomen.

I'm scheduled for two more doses of Gemzar, which will make a total of eight, and then a scan on December 8th. I don't expect anything different from this scan than we have seen with all the preceding ones since August of 2008 - slow but clear progression. And that will mean the end of Gemzar and all active treatment for the cancer (I will continue the Zometa for the time being but it's not considered active cancer treatment). Between now and then I will try another steroid dose reduction next week. If I feel worse I'll bump back up to the original dose and leave it be. If I feel better I'll keep trying small, slow dose reductions until we see how low I can go.

There is still much on my horizon. I've started on Emma's quilt, family will be here for Thanksgiving and Christmas and I suspect there will be other visits from family and friends. I'm just having a little trouble, at this point, seeing more than a few weeks ahead of my nose. I know there's nothing to do but keep putting one foot in front of the other and see where it leads me, but I'd like to get my smile back to keep me company.

This weekend will be graced with a visit from Lindsay and Jacob and a batch of green chile stew made from the chiles I brought back with me from New Mexico. The weather in Connecticut swings wildly from beautiful, crisp and clear to gray, dreary and wet but at least we don't have 2 feet of snow! (Sorry you guys in Colorado.)

More next week when I know how the next steroid experiment goes.

Lisa

What's Up With the Doc 80? - Land of Enchantment

2009-10-23T11:19:00.000-04:00

I'm sitting at my sister's computer for this week's update, enjoying the New Mexico sunshine streaming in through the window. I've already had my first Lotaburger and tonight holds the promise of chile relleno enchiladas and El Modelo tamales. My mother beat me here yesterday, Chris and Sheri arrive this afternoon and Emma and her buddy tonight. My best childhood friend was here to greet me last night and will be over for gossip and giggles for a while this morning before she heads back home and my stepbrother, Bill, stopped by last evening. He was here for work and also heads home today. Tomorrow we all make fools of ourselves at the CSU/UNM volleyball game, the austensible excuse for this little gathering. More than anything, I am thrilled to be in my beloved New Mexico with friends and family with the largest challenge on the horizon being getting my frozen green chiles home with me on Monday.

After the post-chemo pain resolved last week I was more fatigued than usual until the middle of this week. I attribute that to the combination of chemo and my steroid dose reduction so I've decided not to reduce the dose further until the week after my next chemo. I will enjoy my prodigious appetite while able to enjoy the New Mexico cuisine and not worry about fatigue or nausea cramping my style. That's it for where things stand with current symptoms.

I read a news release this last week about an article published in the International Journal of Cancer about survival improvement in people with stage IV lung cancer and bone metastases who are treated with Zometa. It was a small study and the patients were put on the Zometa for bone pain. Turns out it didn’t help the pain, but overall median survival in the group treated with Zometa was over 19 months, while survival for the chemo only (carbo/taxol) was just over a year.

That’s a big difference! In fact, I will reach the Zometa group’s overall median survival on Sunday. My oncologist started me on the Zometa months ago when I started to develop new bone lesions. As you know, I’m on pain meds to control the pain, but we’ve continued the Zometa to try to prevent more new bone lesions and to delay time to fracture of any that I have. At least a part of me feels like the Zometa is playing a significant part in keeping me alive and keeping me active. I feel like I live a charmed life regarding my oncologist and his educated guesses about how to treat me.

That's it for now. I'll be back in Connecticut Monday afternoon and pick up with enjoying the New England autumn after this little break of enchantment.

Lisa

What's Up With the Doc 79? - Down With Steroids

2009-10-14T16:12:00.000-04:00

Today is the day after chemo (Gemzar) and every time is a new experience. Yesterday I had a rather sudden and dramatic increase in all my pain at about 7 pm, 4 hours after the chemo was started. Same thing happened after #2 (yesterday was #4), but it was 24 hours later rather than 4 hours later. None of that after #1 and #3. I'm guessing that that's because I got #1 and #3 with Zometa, the drug they give me to treat bone pain, prevent fracture and slow down the progression of the bone metastases. It's only given once every four weeks and I'm guessing that maybe it protects me from that post-chemo pain syndrome. We'll see. If no pain next time I'll be ready with quick draw pain meds after #6.

I talked to the doctor about my hip pain. I've pretty much decided to let it be for now. As long as I use my cane for any distance and stay off it as much as I can the pain is controllable with a minimal increase in my usual pain medication regimen. Right now I don't see any reason to clutter my life with scans and appointments to consider the possibility of additional radiation. I'll reconsider if the pain threatens to stop me from doing things I want to and would otherwise be doing.

Finally, we talked about the steroids - what they're intended to do and the side effects I'm experiencing. The weakness that makes it difficult for me to get up out of a chair is the most worrisome, although I'm not liking my fat face or fat me. We decided to very slowly try to decrease the dose to one that will lighten up on the side effects but still control the nausea and not let the bone pain get any worse. That's a 25% reduction per week, so I'll let you know how that goes.

Other than that, Emma is recovering from her experience with H1N1 flu and I fully approve of the way the university handled that situation - online reporting, automatic excused absences and test rescheduling, keep 'em out of the health center. Lindsay and maybe Jacob coming for at least part of the weekend. The Fantasticks is at the Long Wharf Theatre in New Haven and I think we'll go wallow in that with a nice meal thrown in for good measure.

What's Up With the Doc 78? - A Week of Ups and Arounds

2009-10-10T11:24:00.001-04:00

It's been an interesting week, this last one. Robert, Lindsay and I drove to Hartford to pick up my mother Saturday evening in gray, drizzly gloom. We stayed up that way for dinner and by the time we left the restaurant were visited by a fantastic thunderstorm and deluge of rain. We had a great family weekend and Robert put together a meal on Sunday that had to rank as one of his all time best. Monday Lindsay and my mother and I had lunch in New Haven before dropping Lindsay off at the train to head back home.

Once the Sunday evening storms died down the weather had been everything from a tiny bit dreary to sparkling, but we woke to drenching rain on Wednesday to celebrate Robert's birthday. I worked during the morning and for reasons that will never be clear to me, my left hip selected that morning to suddenly, after five months of pain relief and no cane, become exquisitely painful. I didn't do anything, the onset wasn't associated with a specific action, but it is suddenly much worse. I came home to hit the recliner and the pain meds. My aunt and uncle came over from Long Island to help celebrate Robert's birthday, see my mom while she's here and see me before they head for Florida for the winter. By the time dinner rolled around I was feeling some better so we headed out for what turned out to be one of the very best seafood meals I can ever remember.

Thursday morning I looked in the mirror and realized that I've developed the "moon facies" associated with long-term steroid use. I've been on dexamethasone since the end of August when I was in the emergency department for nausea and now you can tell. Nothing bad or dangerous, I'm just not used to having a round face. I also called the oncologist about the hip pain. He sent me for plain x-rays but the radiologist couldn't even see the hip lesion, much less whether there'd been a fracture or any other change. The oncologist asked if I wanted a scan to help decide what to do, but I had so much pain just getting the plain films I told him I'd think about it over the weekend and we'd talk when I see him on Tuesday. As long as I use my cane and stay off the leg as much as possible I'm OK. I was already pretty limited in standing and walking time with the pain from the spinal mets, so I'm mulling whether I really want to do anything about this or not. When it first showed up last spring there was actually talk of surgery, but I'm not in any way a surgical candidate at this point so it's either stay off it and take meds or talk to radiation oncology to see what they might be able to do. So I'll mull over the weekend and we'll talk to the oncologist on Tuesday.

Other than that, Emma got hit with H1N1 influenza in Colorado. She was miserable and it was miserable for me not to be able to do anything for her, but she seems to have turned the corner and was able to go to a couple of classes yesterday. All other children are healthy (well, Isaac recovering from knee surgery) and busy.

Don't forget to support Team Sunnyside for the National Free to Breathe event in November and send quiet thoughts to my hip.

Lisa

What's Up With the Doc 77? - All Quiet on the Cancer Front

2009-10-02T07:31:00.001-04:00

The big news of the week is better liver function tests! Whether due to Gemzar, steroids, or all your good thoughts, the two major liver transaminases are normal and near normal. My alkaline phosphatase is still more than twice normal but can come from a lot of things, most notably bone metastases, so I'm not counting it as a liver function test. Other than that, no new symptoms or problems. No new emergency trips anywhere. I went for Gemzar and Zometa on Tuesday and didn't even have the brief increased pain and fatigue I usually get the next day. So the plan for right now is to keep on keeping on with what we're doing. I'll get Gemzar in two weeks, Gemzar and Zometa in four and that's the next time we'll check liver function tests.

My mother arrives tomorrow for a visit and has apparently timed it perfectly to enjoy early fall in Connecticut. We've had a couple of crisp days and leaves are definitely turning. Before she gets here I'm attending a CME course at my hospital in case I have to relicense and recredential next summer.

All three Thomas daughters are in the throes of school applications (well, Emma's pretty much done with applications - now she's just waiting) so the times they are anticipatory. Isaac is recovering from knee surgery and, other than that, all seven of our children are healthy, working away at and enjoying school and happy.

This week you can keep sending steady as you go thoughts. I would be perfectly happy to become the most boring email/blog updater ever.

Lisa

What's Up With the Doc 76? - Cancer Keeps Rolling, Too

2009-09-24T18:02:00.000-04:00

Monday night I experienced some shortness of breath when I went to bed. This was a new symptom for me so I called my oncologist on Tuesday. He examined me and everything seemed fine, but wanted a CT angiogram of my chest to make sure the shortness of breath wasn't being caused by a pulmonary embolism (I've lost count, this was either my 3rd of 4th of these for that reason). There was no pulmonary embolism, but the CT scan showed a new, small pleural effusion (fluid around the lung) on the right. It also showed continued growth of multiple nodules in both lungs as well as the liver and adrenal metastases.

The shortness of breath when lying down hasn't been bothering me since Wednesday - I don't know why - so I'm back to my baseline symptoms with shortness of breath after minor exertion, well-controlled pain and only occasional, controllable nausea. My activities haven't changed, just my knowledge of the scoreboard. Right now my cancer and I hold each other at bay and I'm very thankful for that.

Next week I go back for Zometa and Gemzar (who knows? maybe it's slowing things down and it doesn't bother me much so we'll keep it up). The leaves are starting to change but there has been no real nip in the air yet. Everyone is busy and enjoying life.

Lisa

At Long Last - Lindsay's Rose of Sharon Quilt Top

2009-09-20T14:51:00.002-04:00

What's Up With the Doc 75? - Life Keeps Rolling

2009-09-18T08:17:00.000-04:00

It's been a very busy week, hence Friday morning before I can get out my update. I had chemo on Tuesday and that went without any problems. My oncologist is out for a family emergency so I saw one of the other doctors in the practice and we talked a little about what may be coming. As I mentioned in my last note or the one before, my liver function tests are rising. This could either be because the tumors in the liver are growing or because of the chemo itself. I'm pretty sure, for my part, that it is tumor growth because they started up a little before I even started this chemo and, if you remember, they were going up pretty quickly before I started my very first chem over 18 months ago. If they keep going up, regardless of the cause, they will force stopping the chemo when they reach about 5 times the normal upper limits. Not to be a downer, but this is the last approved chemo for my cancer, so that would be the end of active treatment phase. I continue to get Zometa to slow down the progression of the metastases in the bones and prevent fractures. My bone pain has gradually been increasing over the last couple of weeks, so this week we increased the oxycontin to 30 mg twice a day and I am taking 3 - 4 doses of rescue oxycodone to keep the pain controlled. The really good news in that is that the pain is still very controllable and those are still moderate doses, so I presume I'll keep going to the oncologist for Zometa until something happens to make it moot - fracture through that hip lesion, for instance, that would probably put me in a wheelchair - or until I opt for Hospice only care.

Except for the day after chemo, when I felt truly awful for a few short hours with pain and exhaustion, my energy level is good, nausea is minimal, appetite is good and I haven't lost any more weight. There's lots of interesting stuff going on at the hospital regarding Employee Health, H1N1 flu, practice realignments, etc. so plenty of administrative work to do and I have felt well enough to throw myself into it with abandon. Only the CT DOT is trying to interfere, doing major bridge work over the CT River so it took me an hour and 45 minutes to get to work yesterday. Guess I'll be traveling the back roads for the next couple of weeks.

Other than that, volleyball season has begun! Hannah's team played Tuesday and last night and won both matches 3-0. She made the paper this morning for her 3 blocks, 2 service points and 6 kills! Next week will see at least one more challenging match plus their biggest rivalry with the next town over (although that team is starting out 0-2) so the excitement continues to build around her senior season. Philip is doing better in school than ever before in his short but tall life - go Philip!

The leaves have just started to show a little bit of color, temperatures are cooling and it really does seem like there is a touch of fall in the air. The air conditioner almost never comes on but it's always comfortable so I'm enjoying the season transition very much. The recliner is still the place to be in my house and we are enjoying all the great sports on TV.

The only directed thoughts I can ask for right now would be aimed at my liver function tests, so tell those hepatocytes to take a deep breath and chill out. Next chemo September 29.

Lisa

What's Up With the Doc 74? - 18 Months!

2009-09-10T15:15:00.000-04:00

Just a quickie this week to say that all is well. I tried coming off the steroids and wound up feeling like a flaccid penis that was also nauseated so I'm back on the crack. I doubled my Protonix and the heartburn isn't bothering me. First volleyball scrimmage was yesterday and I made it through 2 1/2 hours thanks to the new stadium seats Robert snagged.

Having great fun helping (minimal help needed) Hannah with AP Physics.

Philip broke his finger in gym class on Tuesday so is out of gym class for a couple of weeks and SO VERY SAD ABOUT THAT. Not.

Emma's vet school applications go in this week.

Lindsay is coming out for the day tomorrow and says she has SO MUCH GRAD SCHOOL STUFF TO TALK ABOUT that it will probably drive me crazy.

Next chemo on Tuesday.

My one serious note comes after an email from my colleague who was diagnosed with stage IV cholangiocarcinoma in December. She is feeling demoralized because treatment is not producing improvement in her cancer and she knows of so many people who have been diagnosed around the same time or since and are finishing or finished treatment and being flipped over into the survivor column. That's the whole problem I've had with the survivor label. I've been alive (surviving) 18 months since diagnosis as of tomorrow. But I am not a survivor. I am still in active treatment and will remain in active treatment until I am transferred to hospice because there are no more approved, effective treatments for my cancer. I have been so blessed with these 18 months and the love and life they have contained. I just wish there had been that survivor column to even aim for.

Thank you all for all you have contributed to these 18 months.

What's Up With the Doc 73? - A Much Better Week

2009-09-03T15:40:00.000-04:00

Wow! I am very thankful to report that the last two weeks seem to have been an anomaly of feeling miserable and I am much, much, much better this week. I haven't had to take anything at all for nausea for the last 3 or 4 days, my pain is adequately controlled, I've made it to work every day and I got chemo and Zometa on Tuesday. Yay! I don't know whether I was dealing with a viral gastrointestinal illness or what, but I tolerated the Gemzar on Tuesday with only moderate fatigue the next day and some increased pain for about 24 hours. I'm still worried about those stupid liver function tests, but as long as I feel good won't ask to repeat them until early October. Maybe they'll give us an idea about whether or not the tumor is responding to the Gemzar.

I'm having some moderately severe heartburn today, even on Protonix, so I'll probably increase the Protonix and start to decrease the steroids. I can always go back up on the steroids if my misery index increases, but right now the heartburn is the most miserable thing I'm experiencing. I'm cut loose from the oncologist until September 15th, when I get my next Gemzar.

I continue to THOROUGHLY enjoy my recliner. It's amazing to me how much more comfortable I can be in that chair than just about anywhere else, including my bed. I've been working away on the last of Lindsay's quilt top elements (7 of 18 left to do) and enjoying baseball, football and even occasional golf.

All the kids are back in school. Hannah finds out about final volleyball teams today, first scrimmage is the 9th and first match of the season is the 15th. Philip is at the Percussion Ensemble meeting today and should be entertaining himself making lots of noise this semester at school. Emma is deeply into the semester and almost done with this round of vet school applications. Lindsay has been to her first World Politics class but is currently in Traverse City with Jacob for her sister-in-law's wedding, so school is on the back burner for the next week or so.

Robert has continued to keep himself busy painting the house and the weather in Connecticut has been as close to perfect as it gets for the last week or so. It's nice when feeling good and beautiful surroundings coincide so nicely!

Thanks for all the antinausea thoughts. They worked!

Lisa

What's Up With the Doc 72? - More Than I'd Like

2009-08-29T13:16:00.000-04:00

It's been a rocky week. Monday I got hit with that overwhelming discomfort thing from which I am always unable to get any relief. I told Robert that I wanted him to find me a recliner but then let my mother and sister in on it and between the three of them I had a brand new La-Z-Boy in my family room by Tuesday afternoon. It seems to be the place that I am most likely to find a position of comfort and is a wonderful gift in my new state of being. Tuesday and Wednesday were better than Monday, but Thursday I woke up vomiting. I made it to an 8 o'clock meeting but apparently looked so poorly that my boss walked me down to the emergency department, where I spent most of the rest of the day.

They didn't find anything big and scary to explain the vomiting - no brain mets on a dry CT, no abdominal obstruction - but my liver function tests are about twice normal and my platelets are low (that latter is from the chemotherapy a week and a half ago). I got fluids and IV antinausea medicine and eventually got myself home and into the recliner. No vomiting yesterday, but the nausea persists. They started me on steroids and I'm hoping to see some relief from that over the next couple of days. The other not too good thing, along with the elevated liver function tests, is that I've lost 8 pounds in the last 2 weeks. So it feels like the balance is beginning to tip in cancer's favor.

I'll see how things go this week before I make any decisions about work. I'd like to keep working through the middle of October, but I don't know if that's going to be workable. I can do a fair amount from home and I know they are amenable to that, so we'll see.

My spirits are flagging a bit as I start to run into walls that I don't seem to be able to get over. I started an antidepressant Wednesday night but that's on hold with the vomiting on Thursday. The steroids should perk me up at least a bit.

Everybody except Lindsay is back in school and she starts Monday, so the new season rolls along. Hannah is at her first volleyball practice/try out for the school team and I look forward to the games upcoming.

Think good antinausea thoughts for me and I'll try to keep the updates coming.

Lots of love,

Lisa

What's Up With the Doc 71? - A Rough Few Days

2009-08-21T07:13:00.001-04:00

I feel like a bear stumbling around after winter hibernation even though it's only been three days. As I've been reporting, I always seem to have some level of nausea. It was a little worse when I went in for my first Gemzar on Tuesday but I was otherwise fine and knew they'd be giving me something for nausea IV before the chemo so we went ahead. Half way through the chemo I threw up what appeared to be everything that had gone into my stomach that day. They held the chemo, gave me some fluids and more antinausea meds then finished the chemo. That was far from the end of the story, however. I threw up twice more - once as soon as I got home and one with my 10 pm medications and then had diarrhea for most of the evening/night. My temperature never got above 100. Wednesday I basically didn't make it out of bed except to go to the bathroom. Things finally started to improve yesterday afternoon after I took some Compazine (old school antinausea medicine) and actually managed some dinner last night.

Even though this started during chemo, I don't think it had anything to do with chemo. I actually think I had a viral gastroenteritis so plan to go about my business and give the Gemzar another go in two weeks. My oncologist and I are talking about pain and nausea control (the opiates may certainly be contributing to the constant low grade nausea so we may try messing with those a bit, although my pain is very well controlled right now and I'm a bit nervous about changing any of that up.

Other than that, everything is status quo. My vital signs and blood counts were fine on Tuesday. I managed to get in to work for a few hours yesterday and aim for the same today. We have a quiet weekend planned before the insanity of a new school year hits next week, and I do mean hit. Emma starts classes for her masters program Monday, Lindsay registers for her class(es) Thursday, the same day that Hannah and Philip start their senior and junior years of high school, respectively. We'll be sitting in volleyball bleachers in no time! Even though summer waited a long time to get here, I'm already tired of the hot sticky weather. I'm not looking for first frost or anything, but dew points in the 60s would be an improvement.

So, anyway, I seem to be recovering from this latest little kick in the pants. No more chemo until September!

What's Up With the Doc 70? - Helping Hands

2009-08-15T07:59:00.002-04:00

I know it hasn't been a week, but something pretty remarkable happened last night and I wanted to share it with you. I was lying in bed just after 10 pm and in quite a lot of pain. I was waiting for my Ibuprofen and rescue oxycodone to work. While I was lying there, I decided to see if I could put all the good thoughts and prayers and hopes you send to good use. So I visualized them all as hands - mothers' and fathers' hands, siblings' and friends' hands, children's and elder's hands - and allowed them to lift me and let me feel weightless. I imagined them gently stroking the lines of my face, gently rubbing my back, neck and shoulders and deeply massaging my feet and hands. Before long I was pain-free and able to go to sleep and slept, with only one bathroom interruption, until my alarm woke me at 6 am (for more medicine). I could easily have awakened my husband or gone to one of my children's rooms, but that would have required physical effort on my part and then, "not quite so hard." or, "a little harder, please," or, "a little to the left," or ,"just a little longer, please." Instead, I got exactly what I wanted for just as long as I wanted it. So thank you all for the thought and prayers and hopes that turned into helping hands for me last night. They were a great comfort.

Lisa

Wht's Up With the Doc 69? - Chugging Along

2009-08-13T16:52:00.000-04:00

No big news this week except that Tuesday was 17 months post-diagnosis. Seventeen months ago I didn't expect to be here now, but here I am! Even though I will be going in for Gemzar on Tuesday, the majority of my cancer treatment is symptom control at this point - fine tuning what meds and when will keep me as pain-free, nausea-free and alert as possible. I spoke to the oncologist about Ibuprofen and its antiplatelet activity and wondering whether we should switch to another NSAID but he didn't think so. He feels all the NSAIDs cause poor quality platelets, which aggravates the poor quantity problem with the Gemzar so he says we'll just watch it. If the Ibuprofen causes problems we'll back off on it and add Tylenol and increase narcotics for a while. Speaking of which, pain has been well-controlled on 20 mg of oxycontin twice a day with 5 mg oxycodone as needed (usually once or twice a day) until I fell in the kids' bathtub on Monday. We're using that one because ours was leaking so it had to dry for a few days before being recaulked. The kids' shower has no nonskid material on the floor and I took a good header. My right elbow is bruised but pain-free. My neck hurt immediately but then went back to it's usual state, but my left hip and low back have been unhappy - not quite as bad today, so I think it's muscular. I did tell the oncologist and we agreed to just watch things for now. I'm on Zofran during the day for nausea and Ativan at night and I seem to be holding my own. Oh, and there's a new mat in the bathtub.

My nonclinical work has proven to be interesting and time-consuming. The entire policy manual for the institution has to be reviewed and revised every year and keeping up with Connecticut statutes is always fun. H1N1 flu continues to entertain everyone and running the quality improvement program for our medical staff is perennially like herding cats. It's keeping me busy and distracted but is not too taxing, physically, so just right for my life as it is now.

Hannah and Philip spent the early week with Uncle Bruce and Aunt Dottie on Long Island. Philip and I are going back this weekend and Hannah may go back with a friend next week. All clinging to summer, we are, as we start having to deal with things like senior portraits (Hannah), 10th grade physicals (Philip) and the general getting ready for another school year. It's mid-August, in case no one noticed!

Friday Lindsay and Jacob came up and we all went to see Julie and Julia and then went out to dinner at the restaurant where Hannah works. The movie and the food were great and we had a wonderful time.

That's pretty much it for now. Good thoughts for our shower to stop leaking and that the Gemzar is gentle on me. More next week.

Lisa

What's Up With the Doc 68? - One More Shot

2009-08-05T07:49:00.001-04:00

I saw the oncologist yesterday and wound up having a good cry in the office. That happened when he mentioned the possibility of trying the Navelbine again and then got a call that he had to leave the room to take. It actually gave me the time to collect my thoughts and be able to explain to him that, while I don't get deathly ill and wind up in the hospital with side effects of Navelbine and other chemo regimens, I do feel just awful. For 5 of 7 days in a Navelbine week I simply can't get comfortable - not in any position, not even for 5 minutes. Off chemo if I manage my pain meds and my meals just right I can sit and talk or sit in the car or sit at my desk for unlimited periods of time. I can interact with family and friends. I can work on a quilt. I can enjoy a movie. I can laugh. So when he came back in the room I explained that to him. I explained that I would deal with the Navelbine if there were a REASONABLE chance of a SIGNIFICANT response and SIGNIFICANT increase in survival. That's not what Navelbine offers, though, so I'm done with it. The only drug approved for my cancer that we haven't tried is Gemzar (gemcitabine). Most prominent side effect is low platelets. The usual schedule is weekly for 3 and then off 1 but the oncologist says that counts are usually too low to give the chemo on the 3rd week so that, in this case he recommends every other week treatment. Infusion is about an hour. Some people get a flu-like syndrome a few hours after leaving the doctor and, if this includes fever, no more Gemzar. I told him I'm willing to try anything once - so we're scheduled for this August 18th. If it doesn't find some way to make me miserable it would be every two weeks until whenever. Meanwhile, I continue on Zometa to try to help with the bone pain and prevent fractures.

My insurance is confused about Hospice and right now is saying they won't cover it while I'm on treatment. I really don't need any of their specific services right now, so I'm OK with whatever happens with that. My doctor will refer me for traditional hospice when we agree that we will not pursue any further treatment, when I'm less active than I am and when pain control becomes more than he wants to handle. Speaking of that, we've increased the Oxycontin to 20 mg twice a day so that maybe I won't have breakthrough pain. I'm still on the Ibuprofen three times a day and, as I said above, when I take my meds on schedule I'm feeling pretty well.

I'm adjusting to my new work schedule without patients. Luckily, H1N1 novel flu looks like it will keep me busy for months to come. Friday, my last clinical day, was long and difficult. I forgot my 2 pm Ibuprofen and by the time I got home I was truly miserable. It took until mid afternoon on Saturday for me to even start feeling human again. But I did and the rest of the weekend was fun with good food, bad movies and family to enjoy.

That's where things stand this week. Next excitement will be after Gemzar on the 18th, but I'll report in before then.

Lisa

What's Up With the Doc 67? - Back from Texas

2009-07-30T17:26:00.001-04:00

We're baaaaaaack! The trip to Texas was wonderful. We arrived in Houston on Friday, drove to our friends' house and spent the rest of Friday being pampered with great food, drink and conversation. Things actually cooled down a bit for us, but we mostly stayed inside anyway. We left at the crack of dawn on Sunday to go to Ian's white coat ceremony. We underestimated just how many people wanted to be part of this so we wound up in overflow seating, but they were great about letting the family come in while their loved one was actually being "coated" to take pictures.

The speeches weren't too boring and it was an emotional day for us all. One of my medical school classmates just recently became the Chancellor for the entire University of Texas system and he was at the ceremony. It was nice to be able to introduce Ian and entrust his education to a friend. We had good Texas barbecue for lunch and then Mexican food for dinner with Ian, Resa, Macy and Isaac. Sunday morning Robert got up at the crack of dawn to take Isaac to the airport then came back to collect me and we headed North. We had lunch with Robert's aunt at the Town Cafe in Centerville and then landed on a friend's doorstep in Dallas for more good food, drink and conversation. We slept in Tuesday then split up and I had lunch with my friend while Robert knocked around on his own. Tuesday evening we met old friends from the SMU chemistry faculty at Celebration for our traditional Dallas confab. Coming home yesterday presented no problems and I used the rest of the afternoon to rest and recuperate. I was back at work first thing this morning and am looking forward to my last clinical shift tomorrow with a very busy schedule.

As far as cancer goes, I've tried experimenting the last few days and taking oxycodone whenever I feel any kind of not good - pain or nausea or extra weak or whatever - and it seems to be working. I've determined that my inability to stand or walk for any significant period of time is actually due to low back pain which pretty quickly brings its friends nausea and lightheadedness into play. Even when my pain is completely controlled at rest or sitting, standing and walking trigger it like crazy. I've been keeping track and will talk to my oncologist and Hospice next week about where to go with pain management so we can get rid of the ups and downs and try to keep things on a more even keel. My appetite is still decent, I haven't lost any weight, I'm getting enough sleep and I'm not drowsy or sleepy during the day. So things are pretty good!

I finished the last of Lindsay's quilt squares yesterday so move on to the trimming and assembling stage and then I just have to applique the border and that one is done. I have Emma's fabric and pattern set to go. Hannah is chomping at the bit to choose hers. Speaking of chomping at the bit, I went with Hannah today to get school supplies! She can't wait to get started on her senior year. She's still volunteering at the hospital and working two jobs. Classes start four weeks from today and volleyball four weeks from Saturday. Philip is in Illinois visiting old friends and old haunts. Emma is back in Colorado and thoroughly sick of moving. Lindsay is coming up Saturday for some math therapy before she takes the GRE.

Robert has started the hunt for stadium seats so I can sit comfortably on the bleachers for volleyball, impatiens are blooming like crazy and the weather is still weird - cooler than usual and whenever it warms up it rains. The outside of the house is all painted and Robert is making his way through the inside. Life is still busy and happy and our eyes are still on the future horizon.

Until the National Free to Breathe Walk is past (November) I'm going to end each email with a reminder to contribute to the lung cancer cause in my name if you are able and the link to the Team Sunnyside fundraising page - so here it is:

http://participate.freetobreathe.org/site/TR/RunWalk/General?team_id=1950&pg=team&fr_id=1139

Next update after I see the oncologist next week.

Lisa

What's Up With the Doc 66? - Saying Farewell to One Piece of My Identity

2009-07-23T05:58:00.001-04:00

It's been a busy week and there's much to catch up on, but the sentinel event of the week has to do with my work. My supervisor asked for a meeting to let me know that hospital administration has decided that being on long-acting narcotics (a fact which I voluntarily declared to them) constitutes a liability risk that they are not willing to undertake and I am being taken off the clinical schedule effective August 1st. This doesn't affect my employment, pay or benefits, I just won't be seeing patients any more. If you had asked me beforehand, I probably would have expected to be thrilled with this turn of events. In actuality, it turns out laying hands on people is a pretty big thing to me and I'm finding myself doing a bit of grieving. Which is probably good - baby steps and all. I'll be losing lots more little pieces of my identity as this process goes on and this is probably a pretty good one to cut my teeth on. So yesterday was my second to last clinical shift ever.

Physically, I'm feeling pretty good. The gastrointestinal garbage from the Navelbine has resolved. I no longer have the bloating and epigastric pain, loss of appetite or early satiety. I'm still trying to find the magic schedule of stool softeners and laxatives that will keep me "unbound" while on narcotics without unleashing the opposite of bound up. My sleep has been a little less restful this week so I spoke to Hospice Tuesday, increased my bedtime Ativan from .5 to 1 mg and had a lovely night's sleep. I am back on regularly scheduled Ibuprofen doses because when I came off of it I was pretty miserable with different pains at different times and I prefer to keep the narcotic doses as low as possible. Once I'd been back on the Ibuprofen for a couple of days I can say I am occasionally completely pain-free, more often I have mild neck and/or low back pain and very rarely have enough pain (usually neck, usually in the middle of the night) to take a "rescue" oxycodone. Hospice is planning to talk to my oncologist about switching me from oxycontin to methadone because you can go pretty high on the dose of methadone without running into the sedative side effects. We'll leave that until after I get back from Texas, because things are very tolerable on the pain control side at this point.

So the improvement in my symptoms allowed me to do the crazy driving schedule last week. Wednesday evening Emma and I drove to my cousin's house in PA, where we enjoyed a late evening kitchen chat before we hit the sack. We left early the next morning and drove to Kennett Square, where we got Emma situated in the guest house, bought some groceries, had some breakfast and then got her hooked up with the high risk emergency staff at the horse hospital. I hopped in the car shortly after noon to head home and ran into some yucky I-95 traffic, making me late for my hospice admission appointment, but Robert took care of things until I got there. I worked a clinical shift on Friday, did laundry and watched a movie with Philip on Saturday and then went to bed early. Sunday morning I took a 5 am train to Boston, took a cab from the train station to Boston College, where I picked up Hannah and her car. We drove from Boston to Bethlehem, PA and got her settled (a little bit late because we got lost in Bethlehem - sorry Hannah and coach) in the volleyball camp and then I turned around and drove her car home and made it in time for dinner! I was perfectly comfortable with all the driving and really enjoyed the time with both girls. Their father picked them both up yesterday and brought them home.

My online friends have started a team for the national Free to Breathe Walk in my honor. It is called Team Sunnyside (my online moniker for many years) and I will try to see if I can get a widget to put on the blog in case anyone wants to donate to the cause.

Today is my last day with Emma and we will pack as much into it as we can. Robert and I leave for Texas early Friday. We will be staying with friends in Houston Friday and Saturday and then head to San Antonio for Ian's white coat ceremony on Sunday. Isaac will also be there so we are hanging around on Sunday to enjoy the kids. Ian starts orientation in earnest early Monday morning so we'll take Isaac to the airport before we head North. After stopping to see Robert's aunt we'll head for Dallas where we have nothing to do but visit with friends before we head home on Wednesday.

So, all in all, a very good week as far as quality of life goes. That's pretty much all that matters to me at this point, so a very good week indeed. Next report after we get back from Texas!

Lisa

What's Up With the Doc 65? - End of Active Treatment?

2009-07-15T18:09:00.001-04:00

Well, it's been a week. To make a long story short, last week's Navelbine just kicked my butt. I felt awful Thursday, Friday, Sunday and Monday. Saturday I got some sort of weird reprieve that let me play Mario Brothers on Lindsay and Jacob's Wii when they came up for a visit. Again, I find it hard to describe. Gastrointestinal symptoms seem to be at the center of it all with epigastric pain, bloating, cramping, nausea, early satiety, and loss of appetite. I also had a tremendous increase in my weakness and shortness of breath with even the slightest exertion. And, again, I just could not get comfortable. I called my oncologist on Monday and cancelled yesterday's and next week's Navelbine. I have an appointment on August 4th, after we get back from Texas, for Zometa and Navelbine and we'll go talk then, but at this point I'm not inclined to accept any more active treatment for this cancer. I presume that these symptoms are from the Navelbine and it's simply not worth it for a treatment that is most likely not to do anything for me and at best might extend my survival by a month or so. If these symptoms were from the cancer, then the Navelbine wouldn't be working anyway so why keep taking it? But every day I feel a little better, so it's pretty clear Navelbine is the culprit.

This is a difficult decision. To some it feels like giving up. To some it feels like accelerating the inevitable. To me it feels like claiming the last vestiges of feeling less than awful that I can claim. Because this decision is difficult and is processed in different ways by the people I love I also requested a hospice referral and the case manager will come out to meet with Robert and me tomorrow afternoon. South central Connecticut is actually the birthplace of hospice in America and they have a very strong program here. They have a program called CanSupport for people still on active treatment and that's what we're enrolling in at this time. But just the term hospice is a loaded one and I feel for all of you who have to process that.

Meanwhile, life goes on and is as busy as ever. Tonight, after work, Emma and I are driving to my cousin's house in Pennsylvania to crash before I deliver her to New Bolton Center early Thursday. I'll drive back in a leisurely fashion and see the hospice case manager late tomorrow afternoon. I have another clinical shift on Friday and a leisurely day (except for laundry!) on Saturday then Sunday I take an early train to Boston to pick Hannah up from volleyball camp at Boston College and drive her to another volleyball camp at Lehigh University. Then home, clinical shifts Monday and Wednesday next week and then we're off to Texas on Friday.

I start the last square of Lindsay's quilt today and should get it put together over the next couple of weeks, at which point I'll start Emma's. The outside of the house should be all painted by the end of this week and Robert is plugging away at the inside as time permits. The impatiens my friend planted last month are growing and blooming (I told you so!) and it is still very lush in Connecticut. It has been a lovely week, weather-wise, not preparing me in any way for Texas in July.

Think good thoughts to hurry away the last of the nasty Navelbine effects so I can enjoy life for a while. Thank you all again for keeping me in your thoughts and prayers.

What's up With the Doc 64? - Still Learning

2009-07-09T05:52:00.001-04:00

Being a cancer patient continues to teach me new things as a physician. The general level of discomfort that I described last week just kept getting worse. As bad as the general feeling of ill ease was the unrelentingness of it all. I just could not get comfortable, no matter what I tried. This resulted in early doses of oxycontin on Thursday and Friday last week, which completely took away the feeling of unease. So Saturday I started taking the oxycontin twice a day and have felt remarkably better ever since. I spoke to my oncologist about it Tuesday and he feels that I was actually experiencing opiate withdrawal during the day because I was only taking oxycontin at night and that taking the oxycontin as it is intended to be dosed, twice a day, I have taken care of that little problem. I feel sort of stupid, but long acting narcotics have not been part of my practice since before oxycontin came on the market, so I’ll try to forgive myself. I have been so skittish about the narcotics that I caused myself more trouble than I needed by trying to keep the dose as small as possible. Now my pain is more than adequately controlled on the lowest possible dose of oxycontin and I am not taking scheduled Ibuprofen any more. This gives me the option of taking either Ibuprofen or short acting narcotics in small doses when I have breakthrough pain. So life on the pain front is very good.

The neck pain is slowly settling down since the radiosurgery (2 weeks ago today) and I am having less and less tingling in my right arm. I have had no more tingling or pain in the left leg since early last week so that turned out to be a curative MRI, I guess.

I saw the radiation oncologist Tuesday and was released from care until I need him for something. I saw the oncologist and had Zometa and Navelbine Tuesday and I’m feeling pretty darned good today. With the pain adequately controlled, my only troublesome symptom is the weakness and I’m learning to live with that. It doesn’t seem to be getting any worse. I’ve learned to rest after stairs, bedmaking, and to limit the amount of standing I do. I use a stool when I see patients during the time I am taking their history so I only have to stand up for the exam. I’ll get a wheelchair for the air travel part of my Texas trip later this month. I’m not having any trouble with daytime sleepiness, just weakness.

My gut problems seem to have resolved with Colace and Miralax every day - but we’ll see if it holds me through this dose of Navelbine. I did develop a sore throat from the radiosurgery late last week and it hurts to swallow but I’m still holding my own on eating with no weight loss.

All in all, this week is better than last. I’m busy planning fall school things with all of my children and enjoying the first real summer weather we’ve seen over this last weekend.

What's Up With the Doc 63? - A Little of This, A Little of That

2009-07-01T19:49:00.000-04:00

After the radiosurgery on Thursday I had less neck pain and no arm tingling on Friday, which was a great big yay. Saturday we headed down I-95 to Bridgeport, took the Ferry to Port Jefferson and drove to my aunt and uncle's house for their 50th anniversary party. The party was a blast, the food was outstanding and it was a joy seeing all the cousins and their kids, but by three hours into it my neck was screaming. We bid our farewells and headed home, where I took an early dose of Oxycontin and slept with my rigid neck collar, which gave me some relief. I called the radiation oncology resident on call the next morning and started a little bit of steroids, figuring that I was experiencing some edema from the surgery. That has helped and I would say I'm almost back to my presurgery pain level and the arm tingling has settled down. I'm off steroids and using the collar as needed.

Friday I also experienced some very sharp pain in my left calf. I called the spine surgeon to ask him to look at my most recent CT scan to see if there was anything worrisome in the lumbosacral spine. Monday I developed tingling in the back of the left leg so he ordered an MRI, which was done yesterday. It doesn't look like there's anything (tumor or degenerative disc disease, both of which are present) pressing on spinal cord or nerve roots so I'll just take the scan with me when I see the radiation oncologist next week and see if we can figure out what's up.

I still get abdominal bloating and discomfort when I eat and have low grade nausea not completely controlled by the Reglan. It's finally starting to make my drive to and from work a bit challenging. For now I can handle it and plan to just keep an eye on it. I don't particularly want Robert to have to do four hours of driving every work day to get me to and from work. I'm also very weak. Two flights of stairs completely do me in. I'm not sure what all of that's about. I'm pretty sure the abdominal symptoms are from the Navelbine, which basically just puts the brakes on the entire GI tract. I'm hoping it's also causing the weakness and that should get a little better as this week off Navelbine progresses.

We had a lovely visit with our North Carolina friends on Sunday and are now fully engaged in the planning and anticipation for our Texas trip. I'm going to cave and ask for a wheelchair for the airport activities. I just don't think I can stand long enough to make it through a security line any more.

Emma finally started at the animal hospital yesterday. It was a very slow start but when she finally got hooked up with the "upstairs techs" apparently she had a good time. It's interesting for her to see how things run at a large, multivet practice in comparison to last summer when she worked for a very busy practice where everything was OK'd by the chief vet.

Hannah has started her hospital volunteering and Philip is at band camp. We'll go up for his end of camp concert and bring him home on Friday.

Next Tuesday I follow up with the radiation oncologist (I'm expecting that it will take a couple of weeks for the post surgical inflammation to settle down before I can really see what kind of benefit I might have derived from the surgery) followed by my oncologist for Zometa and Navelbine. Quilt work continues and I can't believe it's July already!

Lisa

What's Up With the Doc 62? - Positively Positive

2009-06-25T17:28:00.002-04:00

Overall, this has been a much better week than last. I really have only one complaint, so we'll get that out of the way early. Navelbine stops my gastrointestinal tract dead. I am still fine tuning my combination of stool softener and laxatives to try to keep things moving but not by way of painful cramps and explosive you know what. It's weird. It's not just constipation - everything stops. I get bloating and heartburn after I eat and later on lower abdominal bloating and pain. Right now I'm taking Colace and Senna and Miralax.

The fatigue that was so debilitating last week miraculously lifted Thursday evening. It happened again this week on Wednesday, the day after chemo, but was pretty much gone this morning. One day a week, three weeks out of four, of fatigue so severe that I can barely stand up long enough to complete a patient exam I can deal with.

The nausea I was experiencing last week, aggravated by the GI not moving thing, has been much helped by Reglan with no side effects that I can identify.

My pain is currently well controlled on Ibuprofen 600 mg three times a day and Oxycontin 10 mg at night. I add .5 mg Ativan at night and am sleeping well through the night.

Today was the stereotactic radiosurgery. That was a good thing, as I have been having more and more frequent tingling in my right forearm. That's consistent with the tumor in my neck pressing on the C6 nerve root. The radiation oncologist thinks the surgery will take care of that. I asked him how long that would take and he said I'd have to tell him. He promised me some guinea pig food if I'm a really good lab animal. I premedicated myself with 10 mg of Oxycontin and .5 mg of Ativan and a good thing it was. They laid me on the hard CT table and clamped me down with the mask. Here's a picture of me with the mask on my family room floor and Emma's dog looking on:

It was a long and sometimes uncomfortable 45 minutes but was over soon enough. Once they unclamped and released me the radiation oncologist sat me down at the computer to show how they had used 2 different CTs and an MRI to exactly target the radiation and try to avoid structures like my spinal cord and esophagus. It was really cool and Boy! I bet that's a big bill. Thank goodness for insurance. In addition to explaining all of this to me, Emma and Robert wanted to see the linear accelerator and control room and the techs were nice enough to give them the grand tour while I was getting ready. I'm not sure how much they liked seeing me clamped to the table, but it didn't spoil their appetites (they had some awful cafeteria food while I was on the table) and they were very happy to see me walk out of the treatment area alive. I ate on the way home and took my Oxycontin and Ativan to bed for a three hour nap and here I am, good as new.

My mother's visit and the birthday weekend were just as wonderful as I hoped. Everyone is crediting my mother with the miraculous lifting of the fatigue, since that occurred while I was driving to the airport with Emma to pick her up a week ago. The flank steak sandwiches and Boston Cream Pie were perfection (thank you Robert, Lindsay and Emma!).

Best news of all - I get next week off from treatment! The Navelbine is three weeks on, one off and the Zometa is every four so nothing is due until July 7.

Hannah and Philip are finally out of school. Philip leaves for band camp on Saturday. Hannah is working and starts volunteering at the hospital in New Haven next week. Getting Emma enrolled as a grad student in an internship at CSU so she can volunteer at the animal hospital has been a Herculean task but is accomplished and, hopefully, she will start there next week and should be able to get in a couple of good weeks before she heads for Pennsylvania. We are heading to Long Island for my aunt and uncle's 50th wedding anniversary on Saturday and have friends coming for a quick visit on Sunday.

Here's hoping for nothing but visit reports next week (and maybe some guinea pig food if the arm tingling goes right away).

Lisa

What's Up With the Doc 61? - Hanging In There

2009-06-17T22:02:00.001-04:00

I had a lovely porch sitting weekend with Claudia. There's not a whole lot new to report this week. I had chemo #2 yesterday with no adverse events. Overall I seem to be getting weaker and weaker and it really just frustrates me to no end. I have real difficulty explaining it - I can't stand for more than a few moments, I can't sit without back support for more than a few moments and I'm more comfortable semi-reclining than anything else. Even the quilt or posting feel like they take more energy than I have to spare. I'm still working, and that's a struggle. I'm not sure I actually could work two consecutive clinical shifts, but I don't have to so it doesn't matter. I continue with constant low to moderate grade nausea. Additionally, since starting the Navelbine, I have abdominal bloating and just general unease. We are going to try Reglan on the theory that my entire digestive tract just isn't moving like it's supposed to.

I thought I was going to have the radiosurgery this week but it turns out it won't be until next. I've started taking Oxycontin at night along with my Ibuprofen during the day but the neck pain is getting progressively worse and I'd like to get on with the treatment before I have to consider Oxycontin during the day. My low back is also starting to give me fits, and I suppose I'll have to discuss that with the radiation oncologist when I see him next week.

Emma is finding that being a grad student is much, much better than being an undergrad. People actually respond to emails and phone calls! She's admitted and, as soon as they figure out what registration glitch is keeping her from enrolling in the animal science internship, can start working at the vet hospital where Chester is having something cut off his ear today.

My birthday is Saturday. My mom gets in tomorrow. Lindsay's coming up and we have my favorite flank steak and grilled pepper sandwiches and Boston cream pie planned.

Today is the last day of classes for Hannah and Philip. They finish finals next Tuesday and then play for graduation Wednesday night and then they are done with school. Philip goes to band camp from the 27th to July 3rd. Hannah goes to volleyball camp from July 17-22. Emma goes to New Bolton Center for some equine vet experience from July 16-22. Robert and I leave for Texas July 24th and get home the 29th and Emma heads back to Colorado July 25th.

Right now my coworkers are serving up early birthday cake for breakfast!

What's Up With the Doc 60? - I Really Hate MRIs

2009-06-11T06:24:00.002-04:00

Well, I survived Tuesday and I consider that quite an accomplishment. It was the day from HELL in an already overscheduled week. We left the house at 6 to go to New Haven for my MRI. I KNEW with all my knowing ability that this scan was going to be awful, given my baseline back and neck pain. So I took an oxycodone AND an ativan before the test and was STILL crying by the time they finally finished after having me on the table for an hour and a half. The radiation oncologist had told me that I would also be on the CT table for 45 minutes for the treatment planning CT and mask molding so I took another oxycodone when I got out of MRI. I sat in the waiting room with Robert doing crossword puzzles for about an hour and then they called me in for the CT. By this time I was completely loopy, nauseated, but in no pain. In fact, I was only on the table for about 15 minutes. The mask thing was really cool! I laid on the table with my eyes closed and they put this warm, wet thing over my face and shoulders and clipped it to the table. It was this purple plastic mesh stuff that molded to my face and shoulders and will hold me COMPLETELY motionless for the radiosurgery next week. It was weird to see me lying on the counter when I left.

Robert took me home where I had a peanut butter sandwich and then crashed for a while. At 2 we went to the oncologist's office for Zometa and chemo. Counts were fine and chemo went without a hitch. Bonus was some IV antinausea medicine which cleared up the leftover nausea from the morning oxycodone.

After chemo I dropped Robert at home and drove to Hamden to meet Emma for the second half of her doctor's appointment. We came home, had dinner and then went to the end of the year band concert which ran 2 hours and 15 minutes. It was great and I kept reminding myself that it was very possibly the last time I'll see my kids perform on stage but I was completely wiped out by the time it was over. Fell into bed with another ativan and slept the sleep of the just. Yesterday morning I was slightly foggy, not in much pain and a bit tired but the clinical schedule was VERY light and I had no evening commitments.

Hannah and Philip have 6 more class days and then finals. My best childhood friend gets in for a sit on the porch weekend on Friday. Radiosurgery will probably be next week and my mom gets in that Thursday for my birthday weekend.

I made it through Tuesday! Woo and hoo!

What's Up With the Doc 59? - Phase Number Next

2009-06-02T17:37:00.001-04:00

First, what's up with my neck - I met with the spine surgeon yesterday and he's confident that the structural stability of my spine is fine. The tumor is growing, is causing more pain, and is threatening my vertebral artery (probably not a huge deal, but you never know). If it continues to grow it could (and probably would) threaten the nerve root exiting at that level and, eventually, my spinal cord. So all are in agreement that something should be done about it. Choices are real surgery and stereotactic radiosurgery. While there is some really amazing stuff going on with actual vertebral body replacement surgery, everyone is in agreement that my life expectancy is not long enough to warrant the huge hit that my quality of life would take with that kind of major surgery and recovery, so radiosurgery it is. I have a treatment planning CT scheduled for Tuesday in New Haven and the treatment itself will be the 18th or 19th.

Next, never let it be said that I don't know my oncologist. Today was the post-scan, figure out what we're doing visit. First we talked about pain control because pain is the thing that is most threatening to my quality of life at the moment. He is perfectly comfortable managing my pain until (and if) I need really huge doses of oxycontin or morphine, not likely to be the case with me for quite a long while. For now, I'm to continue the Ibuprofen and start taking 5 mg of oxycodone whenever. If I get to the point where I'm regularly taking 20 mg or more a day we'll start oxycontin. I'm cool with that plan and plan to start with bedtime oxycodone because probably a decent night's sleep will help me during the day. Then we got to the heart of the matter - what next for the cancer? He is perfectly in agreement with me that it makes no sense to undertake any challenging treatment at this point. The cisplatin/taxotere was the last shot at trying for a significant response. Now it's just whatever we can think of to control disease without making me feel awful. He wants to go to Navalbine - 10 minute infusion weekly for three weeks, off one week, then repeat ad infinitum. Even his chemo nurse says this one is easy. Major problem is usually constipation, which, with starting opiates at the same time, I'll have to be fairly aggressive about preventing.

I have been really good about not asking prognosis questions but I couldn't help myself today. He wouldn't make any predictions. He said that he knows I like to plan ahead a little bit (Emma was with me and rolled her eyes all the way into the back of her head at that understatement) but that experiences are so varied it's impossible to give any idea whatsoever. He told me that 25% of people admitted to inpatient hospice are discharged! He also said that things tend to go more quickly with people who give up and I made it clear that there are way too many things on my "I want to be there for..." list for me to ever give up and give in. So we left it at Navalbine and Zometa next Tuesday and we'll see how it goes.

So, there's a plan in hand that makes sense to me. Philip turned 15 yesterday - cake was had by all. End of year orchestra and jazz ensemble concert is tomorrow night. Hannah takes SAT II Saturday and it's Emma birthday. Lindsay is coming up and the two of them are going to trip the light fantastic. Monday is Philip's trumpet recital and Tuesday is the end of year concert band and wind ensemble concert. So look for something next Wednesday reporting on all these events and the first Navalbine treatment.

Love to all,

Lisa

What's Up With the Doc 58? - Scan Day Insanity

2009-05-28T15:31:00.000-04:00

Scan days are always a little crazy. I don't sleep well the night before. I don't get breakfast. I have to drink the berry smoothie contrast yuck. I get stuck for a port access for the dye. I get to lie on a hard table with my arms over my head, intermittently holding my breath. Then I get to wait for results. I got exactly what I expected on this one - continued progression of all lesions at about the same rate as while I was on treatment. Which means, yes, that nothing they've given me since last August has done diddly squat to even slow this thing down. All those lovely side effects for nothing.

The real insanity of this scan day came at 10:30 with a call from my oncologist who had just gotten a call from the reading radiologist. The neck pain that has been getting gradually worse over the last couple of weeks is from the same lesion in the C5 vertebra that was radiated in December. It's bigger and is now encroaching on the spinal canal and has consumed about 50% of the vertebral body. So both of them are worried that I'm going to sneeze and become a quadriplegic and they think something should be done right this very minute. Well, hold on, guys and gals. The scan was done today because today's the day that worked in my schedule. We added the cervical spine to the usual chest, abdomen, and pelvis because my neck's been hurting me more. But I'm no different today than I was yesterday and we didn't have to talk to the surgeon RIGHT THIS VERY MINUTE yesterday. Ugh. The orthopedic spine specialist who has been looking at my scans all along is out because he had his own neck surgery 2 1/2 weeks ago, but the radiologist called him at home, anyway, to make him look at the scans. He is blessedly in my camp on this. Yes, it's bigger; yes, it's encroaching a little bit on the spinal canal and vertebral foramen but not the spinal cord. But he's pretty sure nothing dramatically awful is going to happen right this minute. So he sent me for some plain films of my neck and to pick up a rigid cervical to use if I have a sudden increase in pain or any neurologic symptoms. Meanwhile, my oncologist is going to get a little second opinion from a neurosurgeon at Yale.

I am remarkably sanguine about this - not buying into the drama. Yes, my neck really hurts. And my low back and sacrum have become increasingly painful, too, by the way, but nothing structurally threatening there. A week ago my pain was easily controlled with 400 mg of Ibuprofen twice a day. Now I'm up to 600 mg every 8 hours and it's not holding me as well as I'd like. So I had already decided to ask for a pain specialist consult so I could talk to someone about making the move to narcotic pain control but hopefully in a manner that will allow me to keep functioning - long acting rather than short acting, keep awake meds if necessary, preplan for side effects. All things that pain specialists do much better than doctors who do acute disease management. I'm still going to ask for that. I'm also going to take a deep breath and wait and watch for a few days. My guy will be back in the office where he can look at comparison scans and the plain films I had today on Monday. My oncologist is going to have to suck it up and make some sort of educated guess about life expectancy because wouldn't you think any decision about surgery for the neck would have to take that into account?

Aside from the problems with the neck there's the question about what, if anything, to do about systemic treatment for the cancer. I'm going to have to let my oncologist calm down a little bit about the neck before I press him on these other issues. Hopefully we can discuss in some depth when I see him Tuesday. I'm going to want him to find out what phase I clinical trials I might be eligible for (so I can do my part to advance the science) at Yale and Memorial Sloan=Kettering. His office will be able to find out what my insurance will cover as far as post-fourth line treatment. I'm not about to spend thousands of my own dollars on something that is very unlikely to provide any significant benefit and I have very strong misgivings about asking my insurance company to throw good money after bad.

The radiologist was so upset when she called me this morning. She said, "This is just so disheartening." It's hard for me to believe, but I seem to be the only person in my little cancer world who understands (and has understood for many, many months) that this cancer really is going to kill me. The fact that it has allowed me to continue my life with very few sacrifices for this long is amazing to me and a great gift. We'll have to see how much more of that quality life I can wring out of this stone.

Meanwhile, the rhododendrons are blooming like crazy here. The next to weeks are a whirlwind of end of year recitals and concerts. Emma and Molly get here on Saturday and I still have our Texas trip to look forward to in July.

This week you can all just send strong thoughts to all these crazy doctors so that they can deliberate in a thoughtful manner and consider all of me and my life as they try to come up with recommendations for me. Then I can go to the crazy 8 ball and let it tell me what to do.

Lisa

What's Up With the Doc 57? - Good News/Bad News

2009-05-20T06:49:00.005-04:00

Good news/bad news kind of day today. Starting with the good news, I have felt remarkably well for the last two days. The fatigue and weakness are falling away like magic. The nausea is almost gone and my appetite is fantastic - so much so that I gained 3 pounds in Colorado during the graduation extravaganza weekend. I feel really, really good.

The bad news is that I don't have any of the genomic alterations they were looking for at Dana-Farber. So my options at this point are an angiogenesis inhibitor (sorafenib or sunitinib) as a single agent, more chemotherapy, phase I clinical trials or nothing at this point. I'm set to see my oncologist on June 2nd after next week's scan to talk about options. In the meantime I'll talk to my Albuquerque oncologist friend and my family. I'm disinclined to pursue the phase I trial route for quality of life issues. I don't know what the insurance coverage/side effect profile situation is with the angiogenesis inhibitors. I'm also not particularly interested in going with 4th and 5th line chemotherapy while I'm feeling good but I'll mull things over.

Aside from cancer news, I spent a most wonderful weekend in Ft. Collins for Emma's graduation. Chris and Sheri were, as always, the most gracious hosts imaginable. They ended up hosting two parties, rather than the one they had been planning. The weather was beautiful, the graduate was beautiful and it was great to finally meet her roommate and best friend.

Emma, Alex and Katy:

Hannah, me, Emma, and Philip

Sheri, Emma and Chris

What's Up With the Doc 56? - A Better Week

2009-05-14T08:36:00.001-04:00

Thank you all so much for lifting me up last week. I was definitely demoralized and out of gas and all the support helped fill the tank up again.

I saw my oncologist on Friday for Zometa. Still waiting for the genetic testing results from Dana-Farber. There is no HER2 mutation but EML4-ALK FISH results are pending as is the BRAF mutation test. The new neck pain hasn't really been a problem since early last week. I'm still having various aches and pains related to bony metastases - neck, back and left hip, mostly, but all tolerable with 400 mg Ibuprofen twice a day. The oncologist has no idea what the itchy skin lesions are but they seem to be improving with hydrocortisone cream. My counts last week were fine - red cell numbers are as good as they've been since I was diagnosed. My vitals were great - while on treatment I tend to run a heartrate in the low 100s and it was back down to the 70s on Friday. He was fine with not doing anything treatment-wise until after a scan (scheduled for 5/28 instead of 5/26 because Robert's got an EGD scheduled on the 26th) so I'll see him on June 2nd and we'll go from there depending what Dana-Farber comes up with.

For the last few days I've been having weird, mostly fleeting abdominal pains. Some are in the right upper quadrant (where the liver lives), some in the right lower quadrant (where I no longer have an appendix). I called my chemo nurse Tuesday to see if they had drawn chemistries on Friday because I worry about my liver. All chemistries (with the exception of alkaline phosphatase, which is minimally elevated -- probably because of all those bone metastases) are completely normal. My liver function tests are better than they were 4 months BEFORE I was diagnosed. I told her I was frustrated by the continuing weakness and she asked if I was eating and drinking normally. I told her that I was and that I wondered if the radiation therapy I finished last Monday might be contributing. She sighed and told me that she was pretty sure that that was THE cause of the weakness. She said people tend to get more wiped out by radiation therapy than chemotherapy and that I should rest when I feel like resting and that my strength will come back over the next few weeks. When I think back to my radiation therapy experience in December I realize that it's difficult to draw parallels because I had that awful radiation pharyngitis/esophagitis along with the fatigue and weakness and started chemotherapy before I had even recovered from that. So I'm grateful for this treatment break that will hopefully give me time to recover from all the treatments that have assailed my reserve over the last 14 months.

Bottom line - I'm hopeful that I will have the opportunity to get the bounce back in my step over the next few weeks. All objective information says that mild bone pain is the only specific symptom being caused by the cancer itself - off treatment my appetite is good, weight is stable (5 pounds over what I weighed at diagnosis) vital signs and labs normal and no fever. The abdominal pain? Much better yesterday after a laxative Tuesday night so probably proof positive that I am (or was) full of s**t.

So! I leave tomorrow for Colorado and Emma's graduation. Emma arrives for the summer at the end of May. My best childhood friend is visiting mid-June and my mother is coming back for my 51st birthday after that. Robert and I are planning to attend Ian's white coat ceremony. If that is at UT San Antonio it will be July 26th and we will spend the following week in Texas visiting. He is still waiting to hear from UT Southwestern and Oregon. If he winds up going to UT Southwestern the white coat ceremony will be in mid-August and we'd move the entire Texas trip to coincide. If he winds up going to Oregon we'll do the Texas trip as previously planned and head to Portland for a brief visit for the ceremony itself.

Typing all of this reminds me that I didn't expect to make it to Emma's graduation, much less Ian's white coat ceremony, and here I am. I am so very grateful to be here and well enough to attend and enjoy these events. Next up on the wish list are Hannah's senior volleyball season and Robert's Medicare eligibility birthday.

What's Up With the Doc 55? - Now What?

2009-05-07T06:15:00.000-04:00

This is a wait and see week - something I don't do very well with. I finished radiation therapy for my hip on Monday. Dana-Farber thinks there will be results from the genetic testing of my tissue this week. I see the oncologist Friday for Zometa and the big NOW WHAT? discussion.

My nausea has finally resolved and I can taste food again. I'm still puny - I can't stand for longer than about 10 minutes at a time. I successfully caught the horse for the vet on Monday but completely wore myself out in the process. I have been experiencing new pain at the base of my skull/top of my neck - new metastatic disease? I also have very small, itchy, red skin lesions on my face and arm. What's that about? If the genetic testing doesn't show anything that qualifies me for a clinical study and I don't have any metastases that require immediate local treatment my oncologist is going to want to steam ahead with systemic treatment. I won't make any decision about that until I see the results of a scan at least 8 weeks off treatment (May 26), which works well for letting me scoot out of town at the end of next week for Emma's graduation. If the scan shows the same rate of growth that we've seen over the last 8 months I'm likely to say no treatment until symptoms dictate it. Why waste the few options I have left now? Obviously, if things are progressing more quickly than they were on treatment I'll have to rethink that.

Mostly, I'm really tired of this. The last year has been really hard on me, my family and the people I work with and for. For the first time I find myself very sad that I can't be the person I used to be. I can't be the wife my husband wanted. I can't be the rock of Gibralter mother my children need. I can't be the physician my employer contracted for. Sometimes I just wish this cancer would go ahead and kill me fast and hard, rather than the slow death by a million nibbles that I seem to be facing.

Sorry to be a Debby Downer. That's just what's up with the doc this week.

Lisa

What's Up With the Doc 54? - Not Smart Enough to Outsmart a Horse

2009-04-29T16:53:00.000-04:00

I can only laugh about my day and recognize that I must not be in very bad shape since I survived it. I was supposed to meet the vet at the barn where Hannah winters her camp horse, Dennis, for spring shots and a lameness evaluation. Because the world has gone insane with swine flu and, hence, my work life is similarly insane I had to go straight to the barn from work. No big deal. We've been dry for days here so it shouldn't have been a problem. I sat in my car, listening to an audio book and watching the horses graze in the pasture in front of me - a bucolic Connecticut scene if ever there was one. When I had been there for 30 minutes I called the vet's answering service to confirm that he was coming. By the time I got off the phone he was pulling into the barn and lo!, the horses had disappeared. I grabbed a halter and went off in search of them. This took me to the back of the pasture, or "the swamp," where I skipped from stone to stone in my capris and nice navy flats (received as a Mother's Day gift from Hannah last year) and reached the horses. I attempted to put the halter on Dennis, but couldn't get it fastened. I led him off that way. I couldn't go back the way I had come so headed for the little stream, hoping to find stones to step across. Instead, I sunk my foot into the muck, Dennis pulled back, the halter came flying off and he ran back to the herd as I went hands first into the muck at the base of the stream. Both shoes came off - one buried for all eternity somewhere my searching hand couldn't find it. I slogged across the stream and then the pasture barefoot and got a hug and a promise from the vet to come back on Monday and try again. If I could accomplish that stupidity without breaking my hip, I don't think I need the cane any more.

Yesterday I met with the radiation oncologist and had my first treatment. He's going to deliver the treatment in 5 sessions, which will not disrupt my schedule in the least. Two down and three to go. I'm once again covered with Xs to mark the spots and lots of little pieces of circular tape that I'm not supposed to disturb until after the last treatment on Monday. Fun times but nothing that hinders life in the least.

I've emailed the oncologist at Dana-Farber to see where we stand on genetic testing of the tumor. I'm not going to let anyone do anything to me as far as systemic treatment until after Emma's graduation and until I don't feel pyucky and puny from the Cisplatin/Taxotere any more but I know my oncologist will be anxious so I'll try to get a time estimate from Dana-Farber.

So other than swine flu insanity, a confounding horse and persistent side effects from the last chemotherapy everything is going pretty well. The daffodils are on the wane and the tulips are starting to bloom. The trees are all wearing their spring wardrobe and there's the first sign of dogwood getting ready to burst forth. I'm excited for mine to bloom - a pink one that was a gift from Philip last year.

I leave on May 15th for Emma's graduation. A friend is visiting mid-June and my mother is going to try to make it back for my birthday on June 20th. I'm going to wait until I know for sure what my next steps are and see if I can't get to feeling a little better before I make any more travel plans (well, except knowing that I'll head over to Long Island with Hannah and Philip at some point after they get out of school to impose on my aunt and uncle).

I hope spring is putting a little bounce in everyone's step and that you are all enjoying beautiful spring weather and blooms. Every once in a while someone should remind me that a) I'm not a teenager and b) I really should have developed a little more sense by this point in my life.

Lisa

What's Up With the Doc 53? - No Surgery!

2009-04-25T07:39:00.001-04:00

Just a quickie to let everyone know that the orthopedic oncologist feels that the hip metastasis is in a part of the joint (acetabular roof) that actually is not really at risk for fracture and so he thinks it doesn't require surgery. I'm off to see the radiation oncologist on Tuesday to set up radiation therapy to keep it from growing any. This is great news since I won't have to miss any work and won't have to recover from surgery so I'm celebrating this weekend.

Lisa

What's Up With the Doc 52? - Onward and Upward

2009-04-22T19:09:00.002-04:00

Well, I saw my oncologist yesterday and there wouldn't have been an argument, even if I'd been looking for it. Granted, I called him on Monday to catch him up on last week's goings on and get permission to change my appointment time to later in the day, so we'd already worked everything out. Yale Orthopedic Oncology had even contacted me and made an appointment for this Friday before my apointment. All my counts are fine so it's just the dregs of the last cisplatin/taxotere dose that are leaving me feeling as though someone hooked a giant vacuum cleaner up to me and sucked every bit of energy out. Hopefully that and the residual nausea will clear up over the next few days.

I spoke to the pathologist at my hospital (where the second biopsy was done) on Monday and he assured me that a) he'd already talked to Dana-Farber; b) they do, in fact, have the tissue samples and c) he kept a little in reserve just in case there was a SNAFU. Hopefully we'll be hearing something from Dana-Farber about the genetic testing of the tumor in the not too distant future.

I really don't know what to expect about my hip at this point. I'll see the orthopedic oncologist on Friday. He'll probably want an MRI. If he decides that hip arthroplasty (replacement) is the best treatment for this thing he'll have to talk to my oncologist to make sure that I have a long enough life expectancy to make undertaking the surgery worthwhile. Both the potential instability of the lesion and the need to have and recover from the surgery before any further treatment for the cancer can be undertaken argue for the quickest possible decision about what course to follow. If we go with the surgery I'm actually going to have to take some time off work.

So that's what's up with me and my cancer right now. My treatment hiatus officially started yesterday with end date to be determined based on potential surgery/recovery and the genetic testing at Dana-Farber.

NYTimes.com Health launched a new lung cancer feature today which you can find here:

http://www.nytimes.com/interactive/2009/04/23/health/healthguide/TE_LUNGCANCER.html?ref=health

You can see and hear me, see Emma and one of our lazy cats. Oh, and five other lung cancer patients, as well.

Lisa

Daffodils

2009-04-18T15:29:00.000-04:00

The daffodils we planted on the hill in front of my house:

What's Up With the Doc 51? - Forecast Partly Cloudy with a Touch of Orthopedics

2009-04-18T08:39:00.001-04:00

Just remember that partly cloudy means mostly sunny. Our visit to Dana-Farber Tuesday was really a wonderful thing. The thoracic oncologist agreed that it is time to stop cytotoxic chemotherapy and that it is not likely to be a useful treatment modality in the future for me. He also reminded us that, while I have this cancer in a lot of places, I don't have a lot of it and none in any life-threatening locations (near major vessels, compromising my breathing, etc.) and that the biology of the cancer is just different in nonsmokers than in smokers. It tends to be much more indolent (I love that word) and that he wouldn't expect me to really feel any systemic effects from this cancer next week, next month or for MANY MONTHS. He feels they can be leisurely in evaluating my tissue for those oddball genetic mutations (which is good, because they don't exactly know where that tissue is right now) and if I've got one of them then we can go the clinical trial route. He admitted that treatment options are more difficult if I don't have one of those mutations, but pointed out that there are still a couple of small-molecule inhibitors of the VEGF receptor tyrosine kinase, such as sunitinib and sorafenib, that have shown efficacy in my type of cancer and those would be reasonable options to consider.

So I get a big old break from systemic treatment for the cancer after 13 continuous months of feeling like crap because of whatever treatment I'm on and I am really, really looking forward to feeling good for a while.

Which takes me to the touch of orthopedics. When my left hip metastasis first showed up early last month my orthopedic surgeon was adamant that I needed to do SOMETHING about it because it was structurally threatening and I would be in a world of hurt if I fractured through it. After much cross consultation we decided to go forward with the chemotherapy, hoping that that would shrink the mass and make it less threatening. Tuesday's scan showed that that did not happen and the oncologist Tuesday was even more adamant than the orthopedic surgeon had been that I need to do something about the hip right now, BEFORE it fractures. While radiation therapy would be an option if pain were the issue, it probably won't provide the structural stability necessary to prevent fracture and allow continued normal activity. So I'm likely to wind up with a partial hip replacement in the very near future. No fun, but the technology is very good these days and people recover very quickly so we probably just need to get on with it.

I consider all of this to be very positive for me and my family and I am so grateful for all the good thoughts and prayers that you have all offered on my behalf. A very good friend of mine is very seriously ill in the ICU right now and if you could divert some thoughts and prayers in Ann's direction for a while I would very much appreciate it.

Good thoughts also to Hannah's volleyball team and I'll let you all know when I know something more concrete on the orthopedic side.

Lisa

What's Up With the Doc 50? - On to the Next Phase

2009-04-15T20:21:00.001-04:00

Where to start? I guess where I left off is as good as anywhere. Last Wednesday afternoon I started feeling very punk again. No fever, just exhausted and nauseated. It was too much effort to sit at the computer and post or even pick up my quilt. Friday I went to the doctor for counts (fine) and Zometa late in the morning. By 6 pm my fever was once again 102.1 and I was back to just flat out awful. Being the holiday weekend (and my oncologist was out Friday and won't be back in the office until next Monday) I decided to wait and see how I felt Saturday morning before deciding what to do next. Saturday morning my temp was 100.3 and I still felt awful so I called my Albuquerque oncologist friend. He suggested that I take some dexamethasone I have lying around from radiation therapy days. I did and was feeling much better within 3 hours, which I really didn't think steroids could do, but yay!

So I made our lamb cake for Easter dinner and dyed eggs with Hannah and Philip. Sunday morning we had our egg hunt and Hannah and Philip had eggs and candy for breakfast and lunch. I made rack of lamb for dinner and that was delightful. I called Aof on Sunday morning to let him know how much better I was feeling and we agreed that I wouldn't take any more scheduled dexamethasone - just see how I feel and act accordingly. So, of course, I woke up feeling stinky on Monday and took some before Hannah and I headed North for a college visit. That went well and I came home and went to bed. Yesterday I worked before my scan, had the scan and went home.

The scan. Not good, to put it in as few words as possible. Of course, it's never that simple. The #@(%&&*# who read it apparently can't commit himself to a darned thing because the very short body of the report is full of mays and perhaps and such nonsense but the conclusion is clear and one with which, after looking at the scan, I agree completely. Worsening bony disease. Worsening adrenal disease. He thought the big lesion in the liver might be a little better. It's not. He just measured differently than the last doctor. My two favorite radiologists, like my oncologist, are not available because it's April school break week in CT so EVERYONE is off somewhere with their kids.

My oncologist will read the report and say that he considers it to be a "mixed bag" and not clear enough to discontinue treatment. I understand his position - this is really pretty much the end of the line for me unless I have a rare mutation that qualifies me for a clinical study so it's a decision between treatment and no treatment, not one treatment and another. But it's really nasty treatment that leaves me with no real quality of life and it's just not worth it unless it is demonstrably controlling disease, which it is not. So we will argue on Tuesday.

The Dana-Farber radiologists will look at the scans and weigh in on their own, but probably not by Tuesday. I'll drop a disk off at my oncologist's office so he can let the Yale boys take a look, but I'm guessing that will be a limbo opinion because that's what he wants to hear. When one of my trusted radiologists is back I will go over the scan with him/her to make sure that at least WE are in agreement that the scan shows progressive disease.

Bah! At least the Zometa is helping with the already not too bad bone pain I was having. Really, in medical school they taught us that bony metastases were the worst pain we'd ever see to treat. That's how we learned to treat severe pain. I have metastases in my C4, C5, T11, T12, L1 and L4 vertebral bodies, my sacrum and two in my pelvis and pain is just not that big an issue for me. Hallelujah for that.

I won't know for sure until I've heard the Dana-Farber opinion and seen my oncologist face-to-face on Tuesday, but I think this is THAT moment, the point at which I say no more treatment, just make me feel as good as you possibly can for as long as I've got. As always, there's no predicting how long that might be and I don't want to speculate, just shorten my window to 6-8 weeks at a time.

As for how I am today, that would be nauseated, tired and full of uncertainty about the future.

What's Up With the Doc 49? - Hanging In There

2009-04-07T17:53:00.002-04:00

That's my usual response these days when people ask how I'm doing. I'm nauseated, weak and tired from chemo but still here and functioning so it seems like the most appropriate thing to say. I don't really have any big news this week. If I get the day 9 fever that will be tomorrow so I started my Aleve today to try and prevent that. The oncologist gave me Ativan for the nausea and that has been surprisingly helpful. I've still lost 4 pounds and nothing tastes good to me, but I don't feel as awful as I did last cycle. One thing I'm almost hesitant to say is that my neck and hip really haven't been bothering me much for the last few days. I don't know what that means but I'll enjoy it while I can.

Baseball season is here! I'm thrilled to let the trash talking, hope and heartbreak begin for another season. I'm a Cubs fan, if you didn't know, and I was glad to see them win their opener in Houston yesterday. The daffodils have started blooming and the hyacinths and tulips are all up! And I'm here to see it!! My mother and Faith will be here to see it as well in just over two weeks.

Next week is very busy - Hannah and Philip are out of school for April break. Hannah and I are going to try to squeeze at least one and maybe two college visits in next week. We are being challenged by her new job(!) and my scan on Tuesday. Thursday she leaves with her dad for Baltimore where there will be yet another college visit before the volleyball tournament begins and Robert and I head for Dana-Farber.

Emma graduates May 16th and I'm heading out for the festivities. I can't decide whether I hope I'm immediately post-chemo (good scan results next week but feeling awful) or not (bad scan results but feeling good). I guess what will be will be.

That's the end of my planning until I find out what next week brings. Emma is coming to CT for the summer and Hannah and Philip don't get out of school until June 24th! Robert and I will probably try to make it to Ian's white coat ceremony wherever and whenever that turns out to be.

Thanks to all of you again and again for your thoughts and prayers. Every one of them does me a world of good.

What's Up With the Doc 48? - Still Alive after Cisplatin/Taxotere #2

2009-04-01T18:11:00.000-04:00

I had my second cycle of cisplatin and taxotere yesterday and I'm hanging in there today. I'm trying to be more aggressive in treating the nausea and pushing fluids hard. Appetite stinks but I'm able to force normal quantities of normal food down. I'm clinical today, tomorrow, Saturday and Sunday. Administrative Friday and off Monday. If the fever follows its usual course I'd be expecting it next Wednesday so I'll start full dose Aleve on Tuesday to try to head it off at the pass. Next blood count and Zometa are Friday the 10th. Next scan Tuesday the 14th. Dana-Farber Thursday the 16th.

Last week was interesting all around. I went back for my second transfusion of red blood cells on Wednesday and there was a fire in the Ambulatory Medical Clinic! We all had to be evacuated to the conference room. I had my biopsy on Friday and that was a breeze. He thinks he got plenty of good tissue - we'll see what the Dana-Farber pathologists have to say about that.

Chris and Sheri got in Thursday afternoon and we started the great seafood fest with dinner at the Mooring. Friday we had Robert's famous barbecued brisket for dinner and then Hannah, Chris, Sheri and I headed out for the Long Island volleyball tournament. Saturday was a blast - Hannah's team went undefeated and she executed two great slide maneuvers in the last match of the day. The team went to Dave and Buster's for dinner and games and Chris and Sheri and I met Bonnie and Dick for more seafood. Sunday the team made it to the semifinals of the gold bracket but lost to a strong Academy team, tying for 3rd in the tournament. We headed home, picked Robert up and finished up the seafood love-in at the Chowder Pot in Branford. It was a wonderful visit and I felt great all weekend with my little 4 day chemo extension to get me back on a Tuesday chemo schedule.

So at the moment, all is well with me. Think strong thoughts for me to make it through this post-chemo period with as little misery as possible.

What's Up With the Doc 47? - Technology Fails Me

2009-03-27T16:58:00.001-04:00

3/25/09

Well, it's been an interesting couple of days. I showed up at the hospital at 8 am yesterday to have my preprocedure blood drawn, at which point they told me the CT scanner was down and they'd have to reschedule my biopsy. This upset me more than I expected - it's rescheduled for Friday, no big deal, but I guess I had done more mental and emotional preparation than I knew. Then the blood test results came back and my anemia is much worse than it has been. Which, yay!, something to explain feeling so draggy and something that can be treated but what a pain it was to get the transfusion organized for my work hospital. I had to get an order from a physician on staff (my oncologist doesn't have privileges here) which was no big deal because there is an oncologist here who has bent over backwards to do anything I need for me but the fax machine in the Ambulatory Medical Center (where they give the blood) was not working and it took them an hour to actually get the orders AFTER I got there so I wound up in the AMC for >4 hours for ONE unit yesterday so I have to block off my clinical schedule and go back for the second unit today.

CT scanner and fax machine failures - all it took to complicate my life unnecessarily.

Overall I'm feeling OK. Mild nausea, mild left hip pain, moderate neck pain, no fever. Mostly I'm tired of this whole deal, but it's still better than the alternative.

Chris and Sheri get here tomorrow and we head to Long Island for my last volleyball tournament of the season on Friday evening. Next chemo is scheduled for next Tuesday. I'm going to try premedicating with the Aleve on day 8 to try to avoid the fever starting on day 9. Scan April 14th, Dana-Farber April 16 so I should know what the next months hold for me by the end of April at the latest.

What's Up With the Doc 46? - Chemotherapy Really Just Isn't Any Fun

2009-03-19T07:59:00.000-04:00

To say that I feel like I've been hit by a truck might be an understatement. The first three or four days after my 1st cycle of cisplatin/taxotere on March 6th I felt more tired and more nauseated than I have before - much more. The next three or four days were just generally not so great, but not awful. On Saturday morning, March 14 I woke up feeling pretty good, which was great since we were at a volleyball tournament. But everything went down the toilet by midafternoon when the fever, abdominal pain and nausea hit. Anybody keeping track will note that this was cycle day 9. Just like the last two cycles of Alimta. The fever isn't occurring in 21 day cycles, though, because the cis/taxotere was delayed by 3 days. So it always hits on cycle day 9. Today is my fifth consecutive day with temps over 101. Because this was a Friday cycle the fever started on the weekend and I had to go to the ER on Sunday when we got home to get all my cultures, white count and CXR to make sure we aren't dealing with infection, just like the last two times. Everything's fine.

So this can't be anything but tumor fever. Which would be exciting except that the tumor progressed on Alimta while I was having tumor fever so I am not holding out a lot of hope that it means that this chemotherapy is going to be any more effective. See? When I feel bad I lose my natural optimism. I felt so poorly when I went to bed last night that I decided I wasn't going to let the oncologist do even the second cis/taxotere cycle because I feel as though I'm sacrificing time that I could be feeling good, enjoying my family and friends for little return. Then I felt much better when I got up this morning and figured I'd hold off on the final decision. Now my temperature's 101.3 again and I'm just fed up. I talked to both my oncologist's office and my friend in Albuquerque and I'm going to try Aleve instead of Ibuprofen since that's been shown to have better efficacy in tumor fever. And whatever else happens today, tomorrow is another day.

Yesterday the New York Times sent a photographer out to take pictures and record an interview with a reporter that they plan to use in a web-based series they are doing on patient stories. The series is diagnosis-based and this one is on lung cancer so they found me. I thought the interview went really well and because Emma's home for spring break there may be pictures of her in the story, as well. He certainly took a few of her. They said it would probably be 6 weeks before the series is up and I'll certainly give a shout out at the time.

What's Up With the Doc 45? - It's My Anniversary!

2009-03-11T18:00:00.001-04:00

Yep, a year ago today the final pathology report came back telling me that I had stage IV lung cancer. While I haven’t quite reached the published mean survival for my initial chemotherapy regimen (that will be in another couple of weeks) I’m pretty confident that I’ll still be around for that. I had my first cycle of Cisplatin/Taxotere last Friday and am slowly returning to the world of the nonmiserable.

This has been a week of reflection and recentering for me. While my first chemotherapy regimen produced about a 40% reduction in the tumor in my liver, every scan since we stopped that chemo (that scan revealed stable disease with no further reduction in tumor size) has shown progression. Basically, since last September I’ve been on treatments that have made me feel varying shades of awful and provided no real benefit in the way of disease control. I know that this is not how I want to spend the last months of my life. So I told the oncologist to take his very best shot with this chemotherapy regimen because this is it for me. I will do two cycles and scan - if the scan shows stable disease or better I’ll negotiate with him about how many we’ll do total, if the scan shows progression I’m done with traditional chemotherapy.

I have an appointment at Dana-Farber to talk about some promising trials currently ongoing or about to start utilizing receptor inhibitors that will be dependent on molecular testing of my tumor. There is not enough tissue from my original biopsy for this additional testing so I am going to have to have a tissue biopsy before that appointment.

This all makes sense to me - one last shot with traditional chemo, followed by a clinical trial if there is one that makes sense for my tumor’s molecular biology. If neither gives me a significant or sustained improvement I will be ready to opt for best supportive care so that I can feel as good as I can feel for as long as possible. I’m sick and tired as a result of chemo. Sick and tired would be fine if the chemo were benefitting me, but it hasn’t been so I’m ready to opt out of sick and tired.

Which is not to say that I’m giving up. I don’t call sitting in the chair for the cis/taxotere giving up. I don’t call undergoing another tissue biopsy to get molecular markers giving up. I call it setting limits. I call it maintaining as much control over the quality of my life as I can manage. Meanwhile - still here, still working, still loving life, definitely not dead yet!

Hair for Posterity

2009-03-07T10:15:00.002-05:00

OK, here's how I look today:

I know I look tired, and I am, but not TOO bad for the day after chemo!

What's Up With the Doc 44? - Back in the Saddle

2009-03-06T15:18:00.001-05:00

After allowing a couple of days for a little bit of wallowing and a few tears I was back in the chemo chair today, kicking cancer's butt, as my chemo nurse says. My insurance company would not authorize Avastin with anything under any circumstances so my oncologist decided to go with something just a little different than my first regimen. I got cisplatin and taxotere today. Cisplatin is felt to be slightly more active against my cancer than the carboplatin I started with. My chemo nurse told me weeks ago not to let him give me cisplatin because EVERYBODY gets sick on it, but you know me - if it's supposed to knock me on my butt I breeze through and if I'm supposed to breeze through (like Tarceva and Alimta) it kicks me in the butt. Cisplatin is pretty good at causing nausea and vomiting so I got Aloxi in the IV before chemo and also started Emend this morning. I have meds at home if I need something more. Cisplatin can also be very hard on the bladder and kidneys so I got tons of fluids and mannitol to make me pee, which I DID. Kim didn't even have to whisper the Lasix threat. Both Cisplatin and taxotere can cause hair thinning or loss but probably not complete hair loss like with the Taxol so THAT'S good.

I meet with radiation therapy next Wednesday for a consult but it doesn't look like we have to do anything right now for the hip lesion except have me walk with a cane. I've requested the paperwork for a handicapped parking permit from the DMV so I can cut down on walking distances. I'm already getting lots of invitations for mall shopping trips from my "friends."

I've emailed a doctor at Dana-Farber in Boston who has a couple of studies going with targeted therapies that seem to work on people who have failed Tarceva. That would probably be my next step after the current chemotherapy if and when it doesn't work.

There are lots of good things on my agenda for the next few weeks. Emma comes for spring break a week from Sunday. Chris and Sheri are coming out to go to the Long Island volleyball tournament the last weekend in March with Hannah and me. Marta and Faith are coming the last weekend in April to see our bulbs blooming. I'm guessing I can push my oncologist into a scan after my March 31st chemo (that would be the day before tax day) and we'll decide go or no go on more chemo then. Emma graduates mid-May. If I'm still going with chemo that would be the weekend after chemo so I'm going to wait and see how I feel this weekend before I decide about booking a ticket for that. I'm off tomorrow and Monday and plan to get a bunch of work done on Lindsay's quilt and listen to as much of the two Michael Connelly books I have as I can get through. Robert and I went out for a wonderful dinner last night while we knew I'd be feeling well and able to enjoy it. He's leaving Sunday to visit Isaac and friends in South Carolina (Hi, Bill and Jeannie!).

So I'm very much back in the saddle. Thank you all so very much for your emails, calls, cards, prayers and good thoughts. You're what gets me through every day.

Lisa

What's Up With the Doc 43? - Not Good News

2009-03-03T17:01:00.001-05:00

For those of you who have not yet heard, today's scan was not good. Everything that was there before is measurably larger and there are lots of new lesions in lungs, liver and bone. I knew what the scan was going to show. I started having left hip pain over the weekend and it progressed to the point where I'm limping today. I told Robert this morning to expect a bad scan. So no chemo today. The hip pain is from a lesion in the pelvis side of the joint that has broken through into the joint. My oncologist has to talk to my orthopedic surgeon to figure out what and how quickly something has to be done about that. The oncologist wants to go back to my original chemo regimen starting Friday and see if he can control the lesion that way. I don't think the orthopod is going to OK that - he's already ordered me to use a cane and I recognize that if I fracture through the met I'm really screwed. They'll talk tomorrow and come up with a plan. I may have to do radiation therapy or less likely have surgery to stabilize the hip before I can start chemo. Onc could also give me lower weekly doses of chemo during radiation therapy. I told him this is his last shot at "hitting it hard." He gets two full cycles and a scan. If that scan doesn't show stable disease or better then it's palliative care or a clinical study.

So I don't quite have a plan in place but will by the end of the week. I really feel OK - no fevers since last Thursday, nausea letting up, appetite improved, no pain except the hip and that's not really so bad. Still going to volleyball tournaments and working.

There really isn't any question about where this is going, only how long it will take to get there. Damn it all to hell.

What's Up With the Doc 42? - Up and Down

2009-02-26T19:38:00.000-05:00

The Up:

Lindsay and I had an absolutely delightful weekend at Canyon Ranch. We watched a couple of movies together plus the Oscars, ate some delicious and healthy food, had a couple of really restorative treatments, and mostly just enjoyed each other's company. I have to specifically describe something I did called a "Remineralizing Bliss." This all occurs in a massage room on a heated table with the lights low and soft new age music playing. It started with an exfoliating scrub all over. This was washed off with warm towels followed by a dry scrub. Then I got covered with lavender oil and wrapped in warm towels. While I was wrapped she did foot and scalp massages. The oil was wiped off with warm towels and then she did a full body massage with remineralizing lotion. I told her that, if it did nothing else for me, she gave me 100 minutes of feeling physically well (no pain, no nausea) and completely at peace that I could go back to during the many times that are not so comfortable.

I've been sleeping much better in the last week or so allowing me to start the day with more pep and optimism.

The Down:

I continued with daily fevers through Monday. I was able to use my medications to time things so that I usually only had 2 or 3 hours in the afternoon when I felt the need to be in bed under covers and felt well enough for dinner by the time that rolled around. I took a dose of Ibuprofen at 7 pm on Tuesday and by then had had no temp greater than 98.6 for 24 hours so didn't take any more and, brilliant as I can sometimes be, didn't realize until I was really miserable at work at about 3 pm on Wednesday that I should check my temperature, at which point it was 102.1. So I'm back on regularly scheduled fever reducers. The right sided abdominal pain hasn't been too much of a bother.

Along with the fever and abdominal pain I've been having problems with a poor appetite, filling up really quickly and some epigastric fullness and discomfort. By the first of the year I had gained about 13 pounds since starting chemo. Before we left for Canyon Ranch I had lost 4 of those since the first of the year. This morning the scale tells me I have lost 5 more in the last week. Not so good, since whatever the reason for these symptoms (tumor necrosis - good, Alimta side effects - not so good, tumor progression - really bad) I know that when a real weight loss spiral begins it can be very difficult to stop. So I asked Robert to pick up some Ensure for me and called the doctor. He thinks this is all Alimta side effects (boo!) and has been leaning toward stopping the Alimta and switching to something else since LAST cycle's fevers. We agreed that, rather than waiting until March 17 for the next scan, we'll get one Tuesday morning BEFORE the next Alimta and make our decision about what to do when we see the results (that day, so no delay in Alimta if the scan is good). So -- significant reduction in tumor size we go ahead with Alimta and keep working on symptom management. No significant change or progression we quit Alimta and figure out what's next.

I'm also finding that I'm having more and more trouble dealing with the typical difficult worker's compensation patient - the bread and butter of my specialty. I have so little patience for symptom magnifiers and people who are trying to find any way not to work and have someone else pay them. I think I'm going to have to start some meditation or something because it's starting to take a toll on me emotionally. Any suggestions welcome.

I think that's about it. Hannah and I are off for Rochester tomorrow. Her team is seeded #1 in her age division! Monday I work clinically, Tuesday I start with the CT scan, then get my thumb injected, then see the oncologist. I'm scheduled to work clinically Wednesday and Thursday, off Friday, and then work clinically Saturday and Sunday. I'll update after I see the oncologist on Tuesday.

Keep the good energy headed my way.

Lisa

What's Up With the Doc 41? - Sounds Bad, Probably Really Good

2009-02-19T08:34:00.000-05:00

In the "ask and ye shall be given" part of my life I developed right sided upper abdominal pain in the middle of the day yesterday and by the time I got home had fever which eventually got to 102. While this sounds bad and, indeed, laid me very low, it is, in fact, a gift and something to cheer me up a lot. Yesterday was day 9 in my Alimta cycle, exactly the same day that this happened last cycle. I have no symptoms to suggest that I have an infection of any sort. I think this is tumor necrosis. My oncologist was not on call last night and I didn't want to talk to the on call doc and get sent to the ER so I called my Albuquerque oncologist friend who agrees with me 100%. His sign off was, "Well, I'm sorry you're having to deal with this but it's great news!" So I'm alternating Ibuprofen and Acetaminophen every four hours and will call my onc this morning. I'll let him take cultures and counts but no antibiotics and no hospital. Hopefully the meds will keep things under control enough to let me still go to Canyon Ranch, but all I keep thinking is "Die, you fuckers, die."

What's Up With the Doc 40? - Cranky Is Me

2009-02-18T13:46:00.001-05:00

The volleyball weekend was dandy. Weather in DC was sunny and cool (Saturday) to cold (Monday). Hannah's team didn't do very well but my cousin's daughter's team took third in the 18 and under division and it was fun watching her play for the first time. I had a great brunch with friends on Saturday and then another one on Sunday with my stepsisters, their SOs, 5 kids between them and soon to be in-laws of one of the stepsisters.

I walked a fair amount all three days and could barely move by the time we got back to the hotel Saturday night so blew off the team dinner and went to bed. Sunday and Monday were a bit better for stamina. I've been having a fair amount of pelvic/hip pain which is probably from the Neulasta and the thumb that I had injected a little over a year ago is very uncomfortable again. The shoulder injection I had 10 days ago seems to slowly be working.

Mostly I am really cranky. I think I am angry about the chronic disease part of this whole deal, which makes me angry at myself since the alternative is dying. When I was first diagnosed I had to adjust to the concept that I might die pretty quickly and even though I understood, in theory, this whole chronic disease/disease control concept, I didn't really know what it meant. I'm tired of feeling borderline crappy all the time. I'm pissed that this is what the rest of my life is going to be like, that I really don't ever get the real me back. It's better than being dead, but it's not as good as not having this cancer.

I WILL get over this eventually. I don't do well with chronic low grade anger. I have to resolve what I'm feeling into something that is more supportive of getting the most out of whatever time I have left - especially if it's a lot of time. So I will move on from this to something more productive.

From the how I'm doing standpoint everything looks good. All my counts are good, no fever, mild nausea, moderate fatigue. Next visit to the doctor should be March 3rd for the next Alimta cycle then a scan on March 17th. This weekend Lindsay and I head for Canyon Ranch where we definitely plan to stay on the spa/pampering track rather than the fitness/wellness track. We get to watch the Oscars together Sunday night which should be a hoot and something we haven't done for years. The next weekend I'm off to Rochester for more volleyball.

For all of you looking for targets for your thoughts and prayers I could use some chill out and cheer up vibes this week.

Lisa

What's Up With the Doc 39? - Yet Another First

2009-02-12T11:17:00.001-05:00

Tuesday was my third cycle of Alimta. Labs drawn before chemo showed that my anemia is getting worse, not unexpected with the Alimta. There is evidence that survival is actually shortened for people with lung cancer who take red cell stimulators like Procrit, so yesterday I had my first ever blood transfusion. It seems as though circumstances are conspiring to make sure I get to experience as many therapeutic and diagnostic interventions as can possibly be crammed into my life. Maybe that’s karma for all the tests and treatments I’ve “inflicted” on my patients over the years. As these experiences go, this one wasn’t so bad. I worked on a cryptic crossword until the Benadryl made me drowsy enough to nap with the iPod. The chair was comfortable, there was a warm blanket and the staff were both nice and competent, a great combination. I received two units of red cells without a hitch.

Today people keep asking me how I’m feeling and I can only respond that I think I’m OK. Shoulder injection on Monday, chemo and vitamin B12 on Tuesday, blood transfusion and Neulasta on Wednesday. I’m surprised my body even knows which end is up. I still have my aches and pains for which I take Ibuprofen and feel a little better. The shoulder is better today than yesterday. I’m slightly queasy but not really nauseated. My energy level is pretty good. No Neulasta-related bone pain that I can identify. So pretty good, all in all.

My oncologist is concerned that the CT angiogram I had on January 30th shows progression and so we tussled a little on Tuesday about whether he was even going to give me this cycle of Alimta. We finally agreed to do two more cycles and scan after the 4th. I know it’s not any fun having to argue with me all the time, but I’m worried that we’re in different places about treatment objectives. He’ll throw anything at this cancer that might possibly control it. I’m not willing to sacrifice quality of life for what everything tells me is little chance of significant prolongation of life. But a friend reminded me that I really won’t know how any treatment will affect my quality of life until I try it. So for now we have an agreement that gets me through to March 17th on the current treatment. If that scan shows progression I’ll give whatever he wants to do a try, as long as he lets me push it off for a week so I can go to my daughter’s last volleyball tournament without worrying about feeling awful.

So really I am doing just fine today. Another first under my belt, a plan in place and I’m feeling OK. Here’s hoping this holds through my volleyball weekend in DC.

What's Up With the Doc 38? - Now That's What I Call Really Sick

2009-02-06T16:15:00.000-05:00

Now that whatever lovely 8 day viral infection invaded my body is fading into the sunset, I am starting to appreciate just how sick I was. Sicker than I have yet been with this cancer, that's for sure. Highest temperature in the last two days has been 100 even, so I think it's done and on the way out. My cough isn't too bad today and my appetite has definitely picked up. I'm still as weak as a kitten, but I'm sure some of that will come back as I recover from this illness and some of it won't, given the anemia that Alimta is causing. At any rate, I feel something resembling human again and it is a huge relief.

Hannah has also been fighting what looks like the same bug. She made an abortive attempt at school yesterday, like my abortive attempt at work on Tuesday. She made it for the entire day today and hasn't had any fever, so hopefully she's on the mend as well.

A professional acquaintance of mine was recently diagnosed with yet another awful prognosis cancer and in our brief email conversations about adjusting to her new worldview I was taken back to those awful first days of uncertainty and despair. While the uncertainty persists, it's longer range than it was before and I can live with it. The despair is not an issue as I inch closer and closer to both my anniversary of diagnosis and the mean survival point of my first line chemotherapy regimen. I'm still here! I'm still living and enjoying life! That one thing that I wished for so much when I was first diagnosed I have been given - time. Time to get affairs in order. Time to tell people how much I love them. Time to attend concerts and sporting events. Time to go to Alaska.

So since things are pretty stable for me right now, please spare some of those thoughts, prayers, spells, incantations, etc. that you have so generously sent my way these past months for my colleague as she navigates these terrifying early days.

As part of my workup for this fever and cough I had a CT angiogram of my chest last week that showed most of my known metastatic disease. My last scan was December 3 and I went almost 4 weeks with no systemic treatment after that before starting the Alimta. There's been no change in the lung lesion (no visible solid tumor), the liver lesion is significantly smaller (3.6 cm down from 5.0 cm), the right adrenal lesion is slightly larger (4.1 cm up from 3.9 cm), the lymph node under the diaphragm is slightly larger (2.1 cm up from 1.9 cm) and the thoracic spine lesion is unchanged. Apparently there is some question about new small nodules in both lower lobes of my lungs. But to my read, this is stable disease and plenty of information to warrant continuing the Alimta. Radiologists at both Yale and my hospital have discs of everything and will be weighing in with their professional opinions, but I don't think it will change anything. No reason for a scan in February so it will probably be St. Patrick's Day (after my anniversary!) for the next scan. Between now and then Hannah and I will be in DC for volleyball over President's Day weekend, Lindsay and I will spend the following weekend at Canyon Ranch for rest, relaxation, pampering and some real mother-daughter bonding time, and then two more volleyball weekends - Rochester at the end of February and Schenectady mid-March. By the time I have the next scan I will only have one more volleyball tournament on the schedule!

I'm off today and working the weekend. It's supposed to warm up to 50 here on Sunday, which will be a very welcome change. Next Alimta on Tuesday, Neulasta Wednesday and on we go. I wish Phil hadn't seen his shadow, but I know spring will get here eventually. Everyone stay safe and warm and remember - pitchers and catchers report on Valentine's Day!

Lisa

What's Up With the Doc 37? - One More Stumbling Block

2009-01-31T12:13:00.001-05:00

Well, as usual, no news means the last few days have been a little rough. Wednesday I was hoping to get over the lingering nausea and fatigue from Alimta on the 20th, but instead it brought new chest/back pain. I took a little Ibuprofen at work and that seemed to control things. I had had a stupid little dry cough since the weekend. When I got home on Wednesday my temperature was 99.5 so I called the doctor on call before taking more Ibuprofen (the pain was worse again). She said to go ahead and to call my regular doctor on Thursday if it was still bothering me. I had no temperature elevation early on Thursday, but the pain was really bugging me so I called the doctor and he, of course, told me to come by the office. On the way to the office (one hour drive from work) I developed a shaking chill. My temperature was 99.7 when I got to the office but 102.2 before I left which bought me cultures, a chest xray, IV fluids and IV antibiotics. My fever was gone by the time I went to bed Thursday night but I had been ordered not to go to work on Friday so slept in. By mid morning my temperature was 100.7 so it was back to the doctor's office where we fought some more about me going to the hospital. We settled on a CT angiogram to rule out pulmonary embolism (it did) and more IV fluids and IV antibiotics. The cultures were negative at 24 hours so he let me go home. My temp was 102.7 by the time I got home last night and I felt awful, but pretty confident that this is a viral syndrome so I kept up my alternating Ibuprofen/Acetaminophen regimen and I feel a little better today and no fever. But really? Enough already. Hopefully by Monday I'll be feeling more like myself and be able to enjoy my week before chemo a little bit.

The good news is we've actually gone a few days with no new snow accumulation and I can get up the driveway reliably. Oh, and my anniversary gets closer and closer.

What's Up With the Doc 36? - I Feel Great

2009-01-21T12:06:00.001-05:00

I have felt really great for the last few days - 95%, I think. I even shovelled the walk and front stairs yesterday. Yesterday was also chemo day and I am starting to feel the creep of nausea and fatigue so I wanted to claim that 95% while I still could. Because my white count went so low last time I will also get Neulasta today, which is likely to add to the achiness I'm experiencing from the shovelling yesterday. Mostly, I just wanted to get my "I feel great" out there.

The tournament in Lancaster was a blast. All three teams wound up in the top half of their age division and gave the coaches a good idea about what needs to be worked on before we head for DC next month. Hannah played a lot and played well. She and Philip are now deeply mired in midterms. The week will be capped off by Hannah's seventeenth birthday on Friday!

Robert and I have our last quiet, uncommitted, just us weekend for quite a while coming up. I foresee fires in the fireplace, movies on the TV and maybe a little crossword catchup as well as plenty of Robert's good cooking. We have to run Chester to the vet on Saturday for a nail trim - they're trying to desensitize him but boy does he hate having anyone mess with his feet and a pissed off 100 lb dog is no fun to deal with.

I just finished Pride and Prejudice for the gazillionth time. It always ends the same way and I always love it just as much or maybe a little more. Next is a Jane Eyre redo. My current audio book obsession is Michael Connelly's Harry Bosch series. Still working on Lindsay's quilt - I hope to be appliqueing squares by the time she and I go to Canyon Ranch next month.

My oncologist confirmed that the next scan will be after my third Alimta treatment - so February 24th. Until then we just keep checking blood counts and liver and kidney function tests. My anniversary is coming up in March and I am just so very grateful to still be here and feeling well. My list of things to look forward to for the next three or four months is as follows:

January 24-25: quiet weekend with my husband
February 14-16: volleyball tournament in DC
February 21-23: Canyon Ranch with Lindsay
February 28-March 1: volleyball tournament in Rochester, NY
March 14-15: volleyball tournament in Schenectady, NY
March 14-22: Emma's spring break
March 28-29: volleyball tournament on Long Island
April: bulbs blooming!
May 16: Emma graduates from college

Keep up the good work - your thoughts, prayers and wishes are obviously some powerful mojo and I appreciate them more than I can say.

Lisa

What's Up With the Doc 35? - Feeling Good

2009-01-15T10:30:00.001-05:00

87.5% - that's what I give myself today. Which really is pretty great given incurable cancer, radiation therapy complications and chemotherapy! I've had decent sleep the last three nights. My neck is a little achy but not so much that I've needed anything since 500 mg of Tylenol (you're welcome, Kathy) yesterday morning. I'm not very hungry but not nauseated. My energy level is better every day and I actually feel positive and optimistic with a smile on my face for the first time in I don't know how long.

I'm at work today and had an interesting ride in. There is blowing, dry snow with nothing sticking to the roads but that didn't stop the SUV/truck hybrid in front of me from skidding all the way across the road and slamming into the guardrail on I-95. I honestly can't figure out what happened to him. Touching my brakes didn't cause any skid at all. There were a couple of accidents in the direction opposite to the one I was traveling. But I made it safe and sound and we seem to be running a special on DOT physicals today. Plus we have cake because it's one of the nurses' birthday!

Tomorrow I check in with the oncologist to make sure my counts are good to go for chemo next Tuesday and then Hannah and I take off for a volleyball tournament in Lancaster, PA. As always, that's a great diversion from any cares I may have.

So, let's see - the only things I can ask for as far as prayer and thought targets are that my counts are good tomorrow and, as always, concentrate tumor cell killing thoughts on all the stupid tumor cells in my body so the next scan, whenever that may be (late February?) will bring good news.

Wish Hannah's team good luck and I'll check in next week after chemo.

What's Up With the Doc 34? - The Turtle Shell

2009-01-07T11:07:00.001-05:00

A telephone conversation with my sister last night reminded me that it's probably important for me to let you, my support group, know something about me. As she put it, "I know that, with you, no news is NOT good news." She's right. When there is good news I will broadcast it far and wide and as soon as possible. The same is true with really bad news, as you will all recall from last March. However, when the news is only modestly bad I withdraw. When I am stressed but not fighting for my life I pull arms, legs, head and tail into the turtle shell and hunker down for the long haul. Right now is definitely one of those times and really has been since at least early December. So just this once I'm going to lay out all the petty little complaints. I'm going to whine and let you know why I'm safely pulled into my shell.

First is pain. This is something I have struggled with to greater and lesser degrees for the last couple of years. When I went for my physical in November 2007 I told the doctor that everything hurt. My left thumb was the first problem but has been pain-free since it was injected almost a year ago. My right shoulder pain was the very worst of it until my third injection in July and has not bothered me significantly since. Then came the neck pain starting in September. That finally started to ease off with the radiation therapy last month. Now, with nothing at all for pain since last Friday, it's a mild, niggling thing that makes me keep repositioning my head to try to find a comfortable spot. The throat pain that came on midway through the radiation therapy is no longer awful, but has not resolved completely and hurts to swallow anything. This morning I woke up with nasty low back pain - probably because I gave up and went to bed with some Alka Seltzer Night cold medicine, which gave me a wonderful night's sleep, but nine hours in bed is just too much for my back. So my pain inventory today is neck 3/10, right shoulder 2/10, throat 2/10 except when I swallow and then it's 5/10 and low back 7/10. I just called my doctor and told him that I really need to be able to take something besides oxycodone (which makes me drowsy, dizzy and nauseated) and we compromised on a little bit of Tylenol.

Second is fatigue. Self explanatory, really, but just so much not me. My anemia is worse since the Alimta and I'm sure that is contributing. It's not so bad that I can't get out of bed but I have to force myself to get up and move and nothing sounds interesting or exciting to me. In addition to fatigue, I just flat out have the blahs.

The last thing I'm currently struggling with is Alimta side effects. My white count is dangerously low as of Monday night so I received a Neupogen injection yesterday (watch me hit myself in the head realizing that that's probably the major contributor to the back pain) and started an antibiotic. I'm once again avoiding raw foods and trying to stay away from sick people (interesting proscription for a doctor, right?).

Basically, I spend pretty much every day putting one foot in front of the other and hoping tomorrow will be better. And being dissapointed when it is not. I was thrilled when I woke up this morning after a full and restful night's sleep. Then the back pain made itself known. They told me three weeks on the throat - it's been three weeks and five days. A little cold may be contributing to that and my voice is a little better today. Maybe by next week? I would still say that I'm operating at about 75% of my best, a four cylinder engine running on three. I really hope I can at least look forward to some glimpses of 90-95%.

So anyway, I warned Robert about the withdrawal at the very beginning of this process. I become terse (and everyone knows THAT is not my normal state) and just do what I have to do to get through the day. I hope it doesn't reach the point of incivility. I hope I haven't offended anyone. There's really not anything anyone can do to help me and so I don't reach out and ask. But please know that your thoughts, prayers, emails, blog comments, cards, and letters help, even if I don't get around to thanking you for them. Thank you all for sticking with me.

Lisa

What's Up With the Doc 33? - I'm Back

2008-12-30T10:47:00.000-05:00

I'm baaaaack!

On the cancer front, I had my first Alimta treatment yesterday. My oncologist and I decided to just go with single agent Alimta and see what happens. That's how it's approved for second (really third line, in my case) treatment. Today I have a wee headache and I'm the slightest bit queasy. I'm back at work after my Christmas trip (more on that later). The pharyngitis/esophagitis from the radiation therapy is finally acting like it might eventually go away. Up until the end of last week I was requiring 800 mg of Ibuprofen every 8 hours, 10 mg of oxycodone at bedtime and another 5 when I awoke in pain in the middle of the night. Now I'm down to 400 mg of Ibuprofen every 8 hours, which is good, since Ibuprofen can increase absorption of Alimta. It still hurts to swallow but it's down to about a 6 from the worst when it hurt all the time and was probably a 9 with swallowing. My neck and back pain are gone or at least completely managed with moderate doses of Ibuprofen. Next scan is I don't know when as long as I tolerate the Alimta and feel OK. My oncologist doesn't want to rush into treatment decisions at this point, since there aren't any FDA approved treatments after third line so we want to give the Alimta the best possible chance to work.

After refusing to travel over Christmas since my oldest child was born (23 years) we were blessed with excellent air travel luck both on the 24th and 28th. No missed connections, no long delays. We got to Albuquerque early in the afternoon on Christmas Eve where we joined my brother and his wife, my sister and her SO (at her house), Lindsay and her husband and Emma for food and egg nog and good cheer. We spent the night at a bed and breakfast and went back to her house on Christmas morning for presents. Then we went back to the B&B where my SIL made a wonderful breakfast for us and then my kids all headed for Santa Fe to their dad and his family. I took a nap and then we headed back over to my sister's house where we had Christmas prime rib with my sister and her SO, my brother and SIL, my mother and stepfather, SIL's son and fiance and sister's SO's father and sister. It was heavenly (even though it hurt like hell to swallow - taste wasn't affected). Friday we pretty much just hung out and gabbed and then we headed to Santa Fe for my mother's 75th birthday dinner. The margaritas were awesome! I had a blue one called the Turquoise Trail as well as one of their 100% agave specials. The red chile was wonderful. The entire restaurant sang to my mother and we enjoyed 2 of my childhood friends and one of my sister's who were all kind of adopted by my mother. My kids came back to Albuquerque with us after the restaurant and we went to see Marley and Me. Saturday we had breakfast and then just hung out with the family. We ordered BBQ in for dinner. Sunday we got up bright and early and headed for the airport and made it home before too late Sunday night.

Now I guess I'm not supposed to challenge the Christmas travel gods for another 20 years.

Overall I'm feeling about 75% but still at work. Volleyball travel starts in 2 1/2 weeks.

Happiness in the New Year to all.

Lisa

What's Up With the Doc 32? - A Better Week

2008-12-12T16:25:00.002-05:00

Let’s just say I have become a big believer in radiation therapy. The fellow I saw before my first treatment last Tuesday told me it would be a couple of weeks before I could expect relief. In fact, every day has been a little better except for Monday when I missed a treatment because the machine was broken. I have been taking maximal doses of Ibuprofen and narcotic pain medication to sleep at night. Last night I made it without the narcotic. It's still at least 50% better than it was a week ago. What a relief. Pain makes it so much more difficult to deal with every other little thing in life.

The other thing to be dealing with right now is what’s next. I think I will probably be starting third line treatment with Alimta when I get back from my holiday trip to New Mexico at the end of December. My oncologist would like to combine that with Avastin but the insurance company has so far denied the combination. I’ve filed an appeal and we’ll see where it goes. My understanding about Alimta is that I should tolerate it pretty well and should be able to continue to work and live my life if I was able to do so on my previous chemotherapy regimen. It will feel good to be doing something to fight the cancer again.

I finish radiation therapy next week, work for a couple of days and then head to New Mexico with my family for Christmas. I am over the moon about this. I graduated from high school in New Mexico and did my residency there but moved away in 1989. It is where my heart, my sister and my best friend are. My family will all be there and my mother enjoys a big milestone birthday on the 26th for which we will all gather at our favorite restaurant in Santa Fe and celebrate the great woman that she is. There couldn’t be any better way in my mind to finish out this rotten year than with my family in the high desert

What's Up With the Doc 31? - Overwhelmed and Disappointed but Not Dead Yet

2008-12-04T08:05:00.001-05:00

Remember in September when my neck started hurting and I had the MRI scans of my cervical and thoracic spines and there was a metastatic lesion in my C5 verterbral body but I said that was too high to account for my pain and so I was attributing it to the degenerative disc disease and disc herniations seen at the C5-6 and C6-7 levels? Well, I was wrong. (Make sure you cut and paste that into some permanent file for posterity, Sweetie Pie, I know you don't hear it nearly enough from me.) It's been getting worse and worse. I've been treating with Ibuprofen, heat, ice, exercises and trips to my friendly onsite physical therapist and it really seemed to localize in one really sore spot on my right shoulder blade, a "trigger point" for those in the industry. A week ago I experienced a return of the right sided midback pain that was what led to the diagnosis of my cancer in the first place. Tuesday morning I went for my first acupuncture session and Tuesday afternoon I saw my oncologist. By this time the neck pain was such a problem that I needed help changing positions and haven't had a decent night's sleep in weeks. He suggested we go ahead and scan again, I said no, that I'd stick with our plans to stay on Tarceva, scan the 16th and reevaluate then. But by the time I went to bed Tuesday night that "trigger point" was pretty much gone (I've always been a believer in acupuncture in the abstract - now it's concrete.) But that let the central neck pain declare itself in full force and by the time the alarm went off Wednesday morning I had decided to proceed with scans ASAP and look into radiation therapy for pain control if that C5 lesion was growing.

My hospital was amazingly accommodating - they added me onto the schedule yesterday morning and called all over the place to get my lab results from the day before so they could give me the contrast dye. After they deaccessed my port and I got dressed the reading radiologist invited me into his office to go over the scans. The C5 lesion is definitely larger and has broken through all kinds of cortical plates since September, there is a new C4 lesion, the T11 lesion is larger (accounting for the recurrent midback pain), the liver lesion is slightly larger and the adrenal lesion is definitely larger. Pretty definitive evidence that the Tarceva is not working, which is not so great, since that's one of the few things I was pinning hopes for odds beating on after I didn't get a complete response on Carbo/Taxol/Avastin.

Even more impressive than the whole faster than fast getting the scan done and read, I was in the radiation oncologist's office at 2:00 pm yesterday and had my first treatment to the cervical and thoracic spine lesions at 4:20. I had to negotiate a bit to run back over and take care of my afternoon patients after they did the simulation and were setting the machine up to treat me but I, of course, won out. There will be 10 treatments on consecutive business days. I'm back on steroids to prevent problems from swelling in response to the radiation. They said upwards of 70% of patients get very significant if not total pain releif from the radiation therapy and it usually occurs at about two weeks. Meanwhile I'm all about Ibuprofen during the day and oxycodone at night.

So:

Overwhelmed by the neck pain. I've been fighting with this since September and it beat me yesterday. Now that I am no longer in denial about its source and on treatment that is likely to give me significant relief I can hold the overwhelms at bay and deal with it for a couple more weeks.

Disappointed that the Tarceva gave me no benefit.

But definitely not dead yet. My oncologist will be mulling next steps and we'll move on to the next chemotherapy regimen after the radiation treatments are done. I had to cancel my two day CME trip to Boston today and tomorrow but that means I have the next five days without clinical responsibilities where I can pretty much do whatever my body feels like doing. I should get enough relief from the radiation therapy to be able to enjoy the NM trip to the fullest (including egg nog and margaritas if I time the whole chemo thing properly). I still have a low tumor burden, still have an excellent performance status, and don't feel like I'm on borrowed time yet.

That's what's up with the doc this week. You can all look forward to the radiation therapy monologues as I experience yet another piece of the cancer patient pie firsthand.

Lots of love,

Lisa

What's Up With the Doc 30? - Giving Thanks

2008-11-26T11:12:00.000-05:00

Sorry to be mostly absent. Between my non-cancer related neck pain and my Tarceva-related nausea I'm only at about 75% these days. I see the doctor on Tuesday, at which point we'll do liver function tests and schedule a scan for the 16th of December. If the liver function tests are up that will be enough information for me to get off the Tarceva and move on to third line therapy (probably Alimta). If the liver function tests are OK we'll wait to see the scan results on the 16th. If the scan is good I'll deal with the nausea. I just called for more Kytril samples - it seems to work pretty well for me. I wish there were as easy a partial fix for the darned neck pain.

My family all know that Thanksgiving has been my favorite holiday since I was a little kid. It’s all about family and food without any commercial ties. I torture my family every year by forcing everyone to say at least one thing they are thankful for before they dig in to all the goodies at the dinner table. Although this is my first Thanksgiving with lung cancer, I find that I have a very long list of blessings for which I would like to give thanks.

I am thankful for my eldest daughter - beautiful, creative, talented, smart and devoted to her parents. She stands up for me when I don’t stand up for myself and finds ways to show love and care even during the times I don’t need it.

I am thankful for my #2 daughter - beautiful, doggedly persistent, smart and my science buddy. We have been through the mill together as mother and daughter and I am grateful to her for grasping the reins of her life and following her dream.

I am thankful for my #3 daughter - beautiful, wicked smart, athletically gifted and bossy as all get out. I get such joy out of watching her very willfully build her life and I am very grateful that she lets me watch, rather than pushing me away as I did my mother.

I am thankful for my son - tall, smart, funny and so very affectionate. He’s just really starting to show the first glimmers of what his independent adult self will be all about and I think he is going to be such a good man.

I am thankful for my husband - smart, funny, and with more integrity than any other human I’ve ever known. His devotion to and care for me are a comfort and delight and his children have brought immeasurable grace into my life.

I am thankful for my mother - she who led by example the way to being an independent and capable woman as well as a loving and supportive mother.

I am thankful for my siblings who share my history and my future, who love me and my children, who understand that love is immortal, even if the physical being is not.

I am thankful for my oncologist, who listens and considers and does the give and take necessary in doctoring a doctor better than I ever could.

I am thankful for the fact that there are treatment options available for my cancer.

I am thankful for the entire community that provides support to me - my family, friends, and coworkers both in the flesh and in cyberspace - and all the good thoughts and prayers and hopes that they offer to the universe on my behalf.

And I am unspeakably thankful to have this day and every day that I wake up and see the sky; each perfect day that is now a gift that might not have been.

What's Up With the Doc 29? - Clear as Mud

2008-11-11T14:04:00.000-05:00

People ask me how I'm doing and I just don't know how to answer. My scan last week showed no new lesions but small increase in size of everything we previously knew was there. That's the first part of the mud - the radiologist is definitely calling this progression, but if I were on a study it would be called stable disease because it doesn't meet criteria for measurable progression. I have very occasional, mild, easily managed with low doses of Ibuprofen back pain from the lesion in the thoracic spine that started this whole crazy journey. Otherwise, I have no symptoms that I can attribute to the cancer. That's pretty darned good, given that today is eight months since definitive diagnosis. While I was taking Tarceva at 100 mg/day (last dose Wednesday, November 5 at 5 am EST) I had constant, mild nausea. I treat this just like I treated morning sickness - by eating all the time - so I've gained another 5 pounds since I started Tarceva. I also had a manageable rash on my face, neck, chest, back and arms. My energy level was good, certainly better than on chemo. After I saw the scan results last week my oncologist and I agreed that I would take a few days off Tarceva while we decided what to do next. I met with him yesterday and we decided to stay on the Tarceva for another eight weeks. The reason for this is that slow progression is not really a bad thing. I don't have a whole lot of tumor in me for someone with stage IV disease and it really doesn't affect my life too much. It's now clear that I am not going to achieve a complete response or what is termed NED (no evidence of disease). If that doesn't happen with first or second line therapy it's not going to happen. So the treatment objective is disease control. You might ask why we wouldn't shelve the Tarceva given any evidence of disease progression, small as it is. Well, it's not like there are infinite treatment options. Tarceva may be doing its job. We'll know better after another scan (December 29th). But to give it the best possible chance I'm going to try to go back up to 150 mg/day (first dose this morning!). I'm hoping that treating from the get go with Minocycline will help me with the rash and we'll just see if the diarrhea and nausea are a little less awful now that my body has become more familiar with Tarceva. I just really want to make sure we give it every possible chance.

I also went into the oncologist with questions about locally treating the two lesions that have caused me problems and are most likely to do so in the future - the one in my thoracic spine and the one in the middle of the liver. Bottom line - no one will treat the one in the middle of the liver because it is right in the middle of all the major blood vessels in the liver. It's also my only measurable lesion so at least we'll still be able to measure! He doesn't want to radiate the one in the thoracic spine because it's not causing me much trouble (and my friendly spine surgeon looked at it and assures me that I'm not at any risk of structural (fracture) or neurologic compromise as things stand now). Radiation can cause decrease in bone marrow reserve and the oncologist wants me to have as much of that as possible to be able to deal with chemo down the line. So there's that - no spot treatment of any single lesions.

Lastly I asked about adding back the Avastin while I'm on Tarceva. At least anecdotally I've heard about people with slow progression on Tarceva achieving truly stable disease on Tarceva/Avastin. He doesn't want to do that because he seems pretty convinced we'll be back to chemo at some point and he wants to be able to use the Avastin then.

So I have stage IV cancer but it's not kicking my butt too badly. My current treatment may or may not be the very best thing for me. Nobody knows. Clear as mud. But at least I have a plan.

While on my Tarceva break I travelled to New Mexico for an occupational medicine conference. I got in Wednesday evening and stopped by my sister's house for green chile cheese Lotaburgers. Thursday I spent the whole day at the conference and then went to my sister's house for dinner, which was delicious but didn't include any New Mexican fare. We (my sister, her boyfriend, her vet friend who went to UNM undergrad and Colorado State for vet school and I) went to the CSU/UNM volleyball game. CSU is currently ranked #14 in the nation, my brother is an obsessive fan and was worried that they were going to get a challenge from UNM so we went to make him crazy that he couldn't go. We were the only people in CSU regalia besides the CSU team but CSU won so ha! When I got back to the hotel I had fried green chile strips and the best margarita I've ever had in my life for a midnight snack.

Friday I spent the day at the conference and then met friends at Garduno's, where I had carnitas and another margarita. We then stayed up gabbing until the wee hours. One of them has been my friend since age 13!

Saturday I finished the conference and then drove up to Los Alamos to see my BFF (since age 10!). She also has a daughter who is a junior in high school with college athletic aspirations (soccer) so we had fun comparing search notes and college lists.

Sunday morning I drove back down to Albuquerque and had a chile relleno breakfast with my sister before heading to the airport.

My hotel room looked out on the Sandias so every morning I got to see the sun rise over the mountains and the conference ended every day just as they were turning pink. It was just beautiful.

I tried to reach my Albuquerque oncologist friend while I was there to discuss next steps. I wasn't able to reach him. Yesterday I found out why when he called me from the airport in Luxor!

Things I've learned or remembered in the last week:

1) My brother's a nut
2) My heart really is in New Mexico
3) Green chile strips rock!
4) As do premium margaritas!
5) I already know pretty much everything I need to know about occupational medicine to do my job
6) Chile rellenos are good for breakfast
7) Lung cancer sucks
8) Medicine is still more art than science
9) American Airlines can't tell the difference between Hartford and Raleigh-Durham
10) Lung cancer really sucks!

More when we see how I do on the higher (standard) dose of Tarceva.

Lisa

What's Up With the Doc 28? - Such a Cancer Patient

2008-10-22T17:52:00.002-04:00

I stopped in at the oncologist's office for my every 4 week follow up on Tarceva yesterday. There were two things on my mind leading up to this visit. First, I told the doctor that because I've been having weird right sided chest twitches and occasional left side pains and occasional back pain I'm pretty sure the cancer is progressing on Tarceva. This prompted my chemo nurse to roll her eyes and say, "You are such a cancer patient." The oncologist tried not to laugh at me. The typical cancer patient thing I'm doing is assuming the stupid thing is eating me because I don't have a scan yet after change in treatment to show me that it's not. There is absolutely no objective evidence that the Tarceva is not working. Even on the lower dose I still have a rash on my face, neck and chest. I'm in a great demographic group to get good results from Tarceva. It's just that until my scan on Election Day, I will have difficulty believing that its working. My chemo nurse called me with lab results today to reassure me that my liver function tests are still perfectly normal so I'm pretty sure I'll live until the scan, at least.

The second thing on my mind is that I'm starting to obsess about what next? and specifically that I really don't want to undergo third line treatment that's going to make me feel awful (when we find out the Tarceva isn't working on Election Day, right?). The doctor tried to convince me not to cross this bridge until we get to it but I was insistent. I told him I'm not even sure I'd go through whole brain radiation if I ever developed brain metastases (specifically, more than 3). He said, "Oh, yes you definitely would." And the chemo nurse was standing next to me laughing and saying, "Definitely."

The bottom line is that I guess I'm scared. My healthcare professionals are wonderful because they let me know when I'm being unreasonable but they also listen for the kernel of what matters at the heart of my craziness. They let me know that I'm off my rocker being worried about whole brain radiation, but they are very understanding about my wish not to undergo treatment that makes me feel awful by the time we get to third line treatment. And they gently remind me that it's likely we won't need to talk about those specifics for quite some time.

That's where things stand. I feel fine and dandy. My liver function tests are normal. Chest, abdomen and pelvis CT scans and a total body bone scan are scheduled for Election Day so I'm pretty sure my update is going to be lost in the uproar, but I'll send it anyway.

Hannah's volleyball season ends tonight. I leave for an educational program in NM the day after the scan. It is being a spectacular autumn in New England and we now have a functional zone control system on our HVAC system at home. Robert's recovering nicely. All is well in my world.

Lisa

What's Up With the Doc 27? - Back in the Saddle Again

2008-10-08T12:13:00.002-04:00

It is with much relief that I can report how much better things are this week. I spoke to my oncologist on Thursday and we decided to drop the dose of Tarceva. I skipped Friday because the Pharmacy didn't have it in stock and started 100 mg/day on Saturday. It was the most amazing thing - the nausea and malaise just lifted magically at 3 pm on Friday. I had some mild nausea on Saturday but started getting up to eat exactly an hour after I take the Tarceva on Sunday and have had no nausea since. The diarrhea is now easily controlled with moderate doses of Imodium. I stopped the Minocycline on Thursday. The rash started to blossom again yesterday so I restarted the Minocin and so far so good.

On top of the good Tarceva news, I have nascent eyebrows and eyelashes! Really, all my hair is growing back everywhere to the point that I actually shaved yesterday. I had accommodated myself to the hairless look and so was mildly surprised at how giddy seeing the new hair made me. Silliness, but there it is.

Robert is slowly but surely moving forward. He spent his birthday (yesterday, for any of you slackers who missed it) mowing the lawn (!) and getting a haircut. I think mowing the lawn was overdoing it and he's a little under the weather with his headache now but there isn't much else that could make him feel more like he may eventually get himself back. He's cooking, cleaning and applying lotion in all the places I can't reach - so taking very good care of me even though he's not feeling too great yet.

My mother arrives tonight for a no special reason visit. Faith and Bruce get here Friday for the same purpose. I think we girls will plant bulbs this weekend - that will give me lots of color to look forward to in the spring and will help me through the dreary winter. Hopefully good scan results on election day will contribute to the positive wave.

The day after my scan I head to Albuquerque for a few days of CME. Ian, Resa and Macy will be joining us for Thanksgiving. More CME the 4th and 5th of December (Boston area) and then the trek to Albuquerque for Christmas and my mother's birthday. I'm not making travel or event plans for 2009 until we see what the scan shows next month but I'm thinking it's going to be good so I've started thinking about what to do with the kids' April break and summer. I'm sure I'll be driving all over the place with Hannah for volleyball during the club season.

Really, what a difference a week makes. Last week I was sick and demoralized. This week is all sunshine and tulips.

Party on!

Lisa

What's Up With the Doc 26? - Crawling Back Into the Light

2008-09-30T12:22:00.002-04:00

It's been a tough 11 days, I'll admit. Friday evening, September 19th, after a wonderful meal of barbecued ribs and potato salad, Robert fell down the basement steps while fetching a pie for dessert. He was in the ICU for two days with fractured skull, blood in his brain, a couple of fractured spinal transverse processes and bangs, bumps and bruises everywhere that wasn't actually broken. He came home Monday evening, the 22nd. He's still having a lot of pain, but is gradually increasing his activities. Good thoughts for him are much appreciated, as it will be another 4-6 weeks before he really starts feeling like himself again.

The Free to Breathe walk on Sunday, September 21st was great. I walked with my father, Lindsay, Jacob, Jeni, Hannah, Philip, a friend of Philip's and two nurses from my hospital. I spoke briefly to the crowd to fire everyone up before we set off. The weather was beautiful and my team raised well over $6000 - thank you to all of you who donated! There were over 500 participants and over $47,000 raised for lung cancer research.

My Tarceva rash really became uncomfortable on Monday and I called for some topical Clindamycin. I didn't feel very well on Monday - got dizzy feeding the animals and threw up before work. I think I may have been starting off a little dehydration after the walk in the sun. I saw the doctor on Tuesday and he started Minocin for the rash and Augmentin because I had a wee fever on Tuesday morning. By Wednesday night I was having watery stools and by Thursday I was pretty constantly nauseated and not feeling well. I talked to the nurse on Friday and started Lomotil. I went home from work early on Friday and napped during slow days on Saturday and Sunday. Sunday evening I developed an awful metallic taste in my mouth and by the time I got to work yesterday I was truly miserable with nausea and dizziness. I had skipped my Sunday evening and Monday morning doses of Augmentin. I called the nurse. She yelled at me and made me come in for some IV fluids.

Today the taste is almost gone, the nausea is manageable and the diarrhea is better. I think the Augmentin was the major culprit for my misery but this Tarceva is no picnic. Lindsay is coming up tomorrow to help me figure out some sort of makeup regimen that will allow me to look a little less horrifying. I only have Friday to work clinically this week. My mother and sister come next week, so I'm hoping that by mid-October we'll all be feeling a little more like ourselves.

Before anyone yells at me about not calling for help, there's really not anything anyone could have done for us. I've got to adjust to the Tarceva and Robert just has to recover. So it's been a not very good 11 days but I'm hoping for much better to come.

Keep the good thoughts coming.

Lisa

What's Up With the Doc 25? - Cancer Complicates Everything

2008-09-19T10:39:00.002-04:00

It's been an interesting 10 days since my last update. I started Tarceva on Thursday, September 11. On Friday my neck started hurting. More than a little. So I took Ibuprofen and even a dose of oxycodone over the weekend. Sunday saw the first red splotches on my face. The neck pain was no better on Monday morning so I called the oncologist and said, "Good news! Rash! Bad news! Neck pain!" Basically, once you have cancer every little stupid thing makes you worry that the cancer is progressing (or coming back, if you've been lucky enough to beat it completely into submission). He ordered MRI scans of my cervical and thoracic spines, which were done at 6am! on Tuesday. I actually wound up spending 105 minutes inside the scanner and by the time I was done, not only was my neck hurting but my old cancer related back pain was back and my shoulder was a little achy. Bleargh! The scan results actually DID demonstrate a metastatic lesion in my 5th cervical vertebral body, but before you get too disappointed, my oncologist and I don't think it's a) the cause of my pain, or b) necessarily new. It's a small, polite little metastasis, completely encased in the vertebral body. It hasn't broken through bone endplates and isn't threatening vital structures. I have never had an MRI of my cervical spine before and this is small enough that it could easily not have been picked up on the PET scan in March. So, really, not as bad as it sounds since we already knew I had metastatic disease. Changing treatment time is a hard time - we knew my cancer responded to the traditional chemotherapy. We knew it acted pretty aggressively before we started chemo. We're all worried that it will go a little crazy if the Tarceva doesn't work on it so the neck pain made me worry that that was happening. But it really, really doesn't seem like that's the case. The scan DID show herniated discs at C5-6 and C6-7. Especially the C6-7 disc DOES correlate with the location of my pain and I have to assume that's where it's coming from. How did I manage to herniate two cervical discs? Jumping around like an idiot at volleyball games is the only thing I can think of. Whatever. The pain is easily controlled with moderate doses of Ibuprofen so that's what I'm doing.

That was during the day on Tuesday. Tuesday night Hannah's volleyball team fought hard in a losing campaign against East Haven (1-3). Hannah came home in pain and told me that she had hurt her thumb in the third games. To make a very long story shorter, she gave herself a gamekeeper's thumb - pulled a little chip of bone off the lower thumb bone by pulling too hard on the ligament that holds that joint together. She was adamant that she wanted to keep playing (this is her left hand, not her hitting/serving hand) and her dad and I agreed that she wouldn't do herself any significant harm as long as she was able to tolerate the pain. So she went to the trainer to have her thumb taped for the Wednesday night match (also a losing campaign against Shelton, 0-3). Swelling and pain were a little worse after the match, but she played well and satisfied herself that she's not going to lose the rest of her season over this. Which was all good news, but by the time I went to bed Wednesday night my old friend the right shoulder had gone ballistic. I honestly cannot think of anything I did to it to bring on this awful pain again. It happened in August, about four weeks after it was injected and I was worried that I would have to have it injected again before the cruise, but with Ibuprofen and a little phonophoresis and electrical stimulation from my friendly PT it cleared up after about 4 days and had been pain-free until Wednesday. Once again it went from 0 to 10 in a couple of hours and I needed oxycodone for sleep Wednesday night. Thursday I visited the PT for more phono/e stim. And today it's about 50% better. I can't even begin to figure out what's going on with this shoulder but it's given me more pain and grief since February than cancer and chemo have.

As the last great insult, I have come down with Robert's nasty cold. It's just a cold, but cancer complicates everything so I have to be on the lookout for any sign of pneumonia, sinus infection, etc. Meanwhile I'm snotty, achy and have a very sore throat. Again, bleargh.

The Tarceva rash has become progressively worse since Sunday morning - I now have painful pustules across my chin, around my nose and scattered across my scalp. The remainder of my head, face, neck, upper chest and back are covered with blotchy red bumps. So, yay! Right? I will see the oncologist for labs on Tuesday and first scan on Tarceva will be sometime around October 21.

Meanwhile, the Free to Breathe Run/Walk is Sunday in Glastonbury. I am doing an interview on the Mary Jones Show (local AM radio) in 15 minutes and I think an on camera interview on Saturday morning for WTNH Channel 8 to promote the fundraiser. I'm still trying to collect donations to meet my goal. I'm pretty close! Lindsay and Jacob are coming up to walk with me. Robert, Hannah and Philip are also walking with me. My dad and stepmother are coming up to walk with me and some friends from work are walking as well. I can't tell you how much I appreciate all the support.

So I think that covers the last 10 days. Eventful but not so much from a cancer standpoint. Keep rooting for my Tarceva, donate for the race if you haven't already (www.firstgiving.org/lisawoody), and enjoy every day. We're starting to feel just a little fall nip in the air and have turned off the air conditioner. How great is it that I'm about to enjoy another spectacular New England autumn?

Lisa

What's Up With the Doc 24? - Tarceva It Is

2008-09-09T14:51:00.008-04:00

9/9/08

Robert and I went to see the oncologist this morning to figure out where we go next. The oncologist spent last week going over scans with radiologists and talking to the Sloan Kettering thoracic oncologist while Robert and I were in Alaska. We all agree that the scan after the 8th cycle of Carboplatin/Taxol/Avastin shows stable disease when compared to the one done after the 6th cycle. Choices going forward include continuing the Carbo/Taxol/Avastin (nobody's leaning in this direction - I've already had 2 more cycles than customary, the neuropathy was getting a little worse with each cycle and all the oncologists we've talked to on go on for more than 6 cycles with continued clear evidence of response, meaning tumor shrinkage and not just stable disease), continuing Avastin as a single agent, continuing Avastin and adding Tarceva, stopping everything and waiting until clear evidence of progression to add Tarceva or switching to Tarceva as single agent second line therapy now. My oncologist doesn't want to continue the Avastin to progression because he'd like to be able to use it again in the future if necessary and none of us want to stop everything right now. Probably the biggest change in lung cancer in the last year has been the move to go directly from first line treatment to second line treatment without waiting for evidence of progression. The reason for this is that you lose the opportunity to use second line treatment on about 1/3 of patients because they get too sick while waiting for evidence of progression to tolerate second line treatment. So my oncologist wants to try Tarceva "on a short leash," meaning frequent CT scans and even more frequent liver function tests to make sure everything isn't going to pot. He's worried that I may not respond to the Tarceva because my tumor is negative for the gene mutation that is supposed to be associated with good response. My reading of the literature is that there really isn't that good an association between the mutation and response. I may not see tumor shrinkage, but I'm hoping that the Tarceva will keep things stable where they are. There is one recent study of long term (>4 years) responders to the class of drug that includes Tarceva and most of those long term survivors do not have the genetic mutation.

I've read everything that I can find about Tarceva and plan to do everything that I can to have the best chance of a good result. I stopped Protonix last week and, lo and behold, without chemotherapy to eat up the lining of my gastrointestinal tract, no heartburn! Tarceva is dependent on an acid environment for optimal absorption so proton pump inhibitors like Protonix are contraindicated. I will set an alarm for 5 am every day to take the medication. You are supposed to take it at the same time every day and wait for at least an hour to eat or take other medications. I'll keep it at the bedside so I shouldn't have to really wake up to take it. A rash which looks like but isn't acne involving the face and scalp is common and strongly associated with tumor response. That kind of sucks but I'm accustomed to looking a little weird by now. At least I should get my eyebrows and eyelashes back!. Last but not least I'm armed with Immodium and Lomotil, as fairly bad diarrhea is the other common side effect of Tarceva.

So enough about cancer. On with the trip report!

Robert and I flew nonstop from JFK to Vancouver, BC on Sunday, August 31. We took the Norwegian Cruise Line transfer to our ship, the Norwegian Sun, at Canada Place. This was a first cruise for both of us and we were pretty blown away by the ship. We had lunch in the Seven Seas restaurant

and then went to our stateroom to unpack. We pulled away from Vancouver at about 5:30 pm. The view was spectacular -

the weather was gorgeous on Sunday after a week of pretty constant rain. We had dinner and checked out the on board casino.

Monday morning we had breakfast in the Seven Seas restaurant and agreed to share a table. We were lucky enough to meet Zel and George, Canadians who have done this cruise before and happily responded to Robert's inquiry about playing bridge. We shared much of the remainder of the cruise with them playing bridge, gambling at the casino, riding the train in Skagway and eating in the restaurants. They gave us great pointers about cruising, improved our bridge game as much as is possible in a week with such miserable starting material and convinced us to play Three Card Poker rather than slots and Let It Ride. My two straight flushes and three deuces helped us stretch our gambling stake for the entire week. They didn't do too badly, either!

Tuesday we docked in Ketchikan.

We got out and walked around the town (Sorry, Sam, this is the closest I got to getting a picture of a moose for you).

There is a salmon hatchery in town and we were lucky enough to be there during the salmon run so we got to watch those wacky salmon throwing themselves at the rapids to get upstream.

Wednesday we docked in Juneau and we took a bus to the Mendenhall Glacier.

Wow. I've never seen a glacier before and it was just stunning.
We tried to miss the bus because I made Robert take a little 3/4 mile hike. We were 2 minutes late getting back to the bus but the driver didn't leave without us. Many stink eyes were sent our way by the other passengers, though.

Wednesday afternoon the captain took the ship up Tracy Arm toward Sawyer's Glacier.

There was so much ice in the water that he couldn't get much closer than about three miles from the glacier but, again, it was spectacular. We had a balcony stateroom and I was smart enough to bring my quilt so I could sit out on the balcony to enjoy the scenery.

Thursday we docked in Skagway and took the narrow gauge railroad up almost 3000 feet to the US/Canadian border. We saw remnants of the trail that the gold stampeders took to get to the Yukon and, again, the scenery was spectacular.

Friday was clear sailing. We went to a virtual behind the scenes tour of the ship, which was pretty amazing. Thrusters, stabilizers, rudders, engines - the sheer enormity of running the ship and provisioning for 2200 passengers was amazing! Saturday we went through the Inside Passage again and docked in Vancouver at about 7 am on Sunday. We had an uneventful trip to the airport and through customs and got into JFK at about 11:45 pm Sunday night, exhausted but as happy as we could possibly be with our trip.

I was at work bright and early yesterday morning, Hannah's first volleyball game of the high school season is tonight and our friends Philip and Irene arrive from Oregon on Friday. The Free to Breathe Walk in Glastonbury is Sunday, September 21st. If you haven't had to opportunity to visit my fundraising page for the walk, please do and consider sponsoring me. Just about the only thing any of us can do to give me and everyone else with lung cancer better chances than the dismal ones we have right now is spur research. That's what this walk is for, so we're going for it. Please send the link on to anyone you think might be interested in contributing.

So that's where things stand in the Doc's world today. I feel spectacular - my energy level is pretty much normal, my toes are just a little tingly, I only gained 5 pounds on the cruise and Tarceva is covered by my prescription plan. What else could I possibly hope for?!

Lisa

What's Up With the Doc 23? - Moving Right Along

2008-08-27T13:20:00.001-04:00

8/27/08

This is convoluted, so I apologize in advance. First, yesterday's scan shows stable disease to mild improvement. My oncologist is taking all the scans to his favorite radiologist to review. If they decide that there is continued decrease in tumor size the choices would be:

1) Continue the current therapy
2) Stop the Carbo/Taxol and continue with Avastin alone
3) Stop the current therapy and switch to Tarceva

I think he is leaning toward #3. Tarceva is a pill with much fewer side effects than the intravenous chemotherapy and it's what they would have done first for me if my liver hadn't had a heart attack. They would obviously watch very closely and frequently to make sure that the tumor is not progressing on the Tarceva. Because I have not developed resistance to the Carbo/Taxol/Avastin they could always go back to that if the Tarceva doesn't work. Tarceva offers me the chance to grow my hair back and feel stronger without all the bone and joint pain and, because I'm a never-smoker, is actually more likely out of the box to produce a response than the Carbo/Taxol/Avastin was. I actually think this is what he's going to recommend. Which makes me really, really happy.

Probably he will want a PET scan soon after I get back from the cruise to determine how much active tumor is really left. We could be looking at scar tissue everywhere. That wouldn't change anything except that he's still thinking it might make sense to go after the largest liver lesion with cyberknife while it's small enough for the cyberknife guys to be willing to do it.

My shoulder went crazy again over the weekend to the point of ice, oxycodone, PT for phonophoresis/electrical stim, and tears on my part. It is much better than it was Monday, but I will probably see if the orthopod will inject it tomorrow to give me the best chance of not being miserable on the cruise.

I had a little fever yesterday so they drew blood cultures and labs today just to make sure I don't need antibiotics. I have to doctor myself while on the cruise if I get a fever, since no culture facilities will be available.

So I'm making reservations for NM in Christmas because all indications are that I will be around and feisty.

What's Up With the Doc 22? - How Crappy is Crappy?

2008-08-21T11:48:00.000-04:00

8/21/08

OK, so it's been a little over two weeks since last I wrote. I had chemo cycle #8 on August 12th. I almost didn't because my white count and absolute neutrophil count were borderline, but my oncologist knew he was in for a BIG fight if he tried to put it off so he just gave up and hung the bags. Hannah spent lunch with me because we thought volleyball was going to be televised on the Olympics, but no such luck. As always, no trouble on infusion day or the next day. I started with my achiness Thursday evening and felt just generally crappy Friday and especially Saturday, but by Sunday was feeling better. Hannah and Philip and I headed over to Long Island to see my aunt and uncle. They waited on me hand and foot and let me just cocoon with a blanket in a recliner - just what I needed.

The thing that's starting to get to me is the constant respiratory tract inflammation that the chemo causes. My nose runs like a faucet, I'm sneezy, I have a sore throat and very unsexy raspy voice and a mild cough that doesn't bring anything up. I just always feel like I have a bad cold. This, combined with the numbness in my feet (now probably >50% of the soles of my feet are numb), is just making me tired of the side effects of the chemo. I'm OK with almost no hair (although the loss of eyelashes means I'm always getting stuff in my eyes) and the fatigue is not too bad, but the everyday overall feeling moderately crappy thing is getting old. Better than dead, mind you, but old nonetheless.

Back to school is swinging into motion here. The parent/player volleyball meeting was Tuesday evening. I am so thankful that Hannah is now driving - all I have to worry about is getting to games! Freshman orientation for Philip is next Tuesday and Thursday is the first day of school. Emma goes back to class on Monday. Her vet school applications are almost done! Ian had his first med school interview on Monday and has another one tomorrow. Classes start after Labor Day for him.

It's absolutely shocking to me that we leave for our Alaska cruise a week from Sunday. One of the nurses I work with confided that she really didn't think I was going to make it until the cruise. That sort of took me back a bit, but then I remembered that that's how it goes for the majority of people with advanced lung cancer and reminded me to be thankful for this chemo regimen and what it's doing for me, crapness aside.

Next scan is scheduled for Tuesday and I meet with my oncologist on Wednesday to discuss next steps. If we are going to continue on these drugs I at least get a week's break since the cruise is scheduled for my usual chemo week. All the more reason to savor that vacation. By the time we get back I will be six months from my diagnosis. I am much more optimistic than I was three months ago and cautiously thinking about scheduling things like Christmas and my mom's birthday in New Mexico and graduations for Emma and Ian. Rather than thinking I won't be around to hear about their professional school acceptances (keep fingers crossed for both of them) I'm already getting impatient to know what they're going to be doing next fall!

So life keeps rolling right along, thank you very much. It's been busy at work, which is good for me even though I grumble. Start of school is always a crazy happy time while the kids settle into a new routine with new classes and teachers. Life is good, crapness aside, and I'm thrilled to be here typing away to all of you.

Next update after I see the oncologist next week.

Lisa

What's Up With the Doc 21? - Living Life

2008-08-05T20:36:00.002-04:00

8/5/08

Since my last update the deaths of two cancer victims have touched me. First, on July 25th, Randy Pausch died of pancreatic cancer just under two years from his diagnosis. I had actually viewed his Last Lecture before I was diagnosed and, while it didn't cause any major change in my already sunny and positive disposition, it certainly helped me turn to that as my most powerful weapon in this little war I'm waging. Last Saturday a colleague of mine, also a never-smoking woman physician just a year older than I, died of stage IV non-small cell lung cancer that was diagnosed in April. She had daughters who are 12 and 18.

I certainly don't know why my tumor is responding to chemotherapy when hers didn't. I believe that it's all pretty much luck and biology and I am exceedingly grateful that I wound up on the good side of that coin flip. The upshot of these two sad deaths is that I feel more compelled than ever to live every moment of every day to the fullest and to appreciate every bit of joy and beauty resident in each of those days.

So it's a week until chemo cycle #8. I took Hannah to Washington, DC on Friday. We had dinner with my stepsister Tanis and her children and then crashed on her couch. Saturday we did Hannah's first college visit at George Washington University. Then we checked her in for volleyball camp at GWU. I met some invisible friends for Indian food and then stayed up way too late making up for all the years it's been since Tanis and I got to just chew the fat together. My drive home Sunday was fairly uneventful, although I do so hate the George Washington Bridge. I knew I'd pay some price for all the walking and talking on Saturday and so I'm dealing with a sore throat, stuffy head, runny nose and headache that I always have to greater or lesser degree after each cycle - just a little worse this time than the last couple of cycles because I diverted some of my energy away from fighting that to my DC activities. Totally worth it on all fronts.

My energy level is good, my toes are just the tiniest bit tingly, and I am alive and able to enjoy it. There are lots of fun things coming up in the next few weeks and months. Next up Robert is going to Texas to meet Ian and Isaac and their families. Ian has medical school interviews (I keep telling him he's going to get into medical school but I don't think he really thought it was a possibility until those first interview invitations came in) and Robert is looking forward to showing him as much of Texas as they can squeeze in in a week. Philip and I will be spending a weekend on Long Island with my aunt and uncle. I plan to be waited on hand and foot and Philip is looking forward to learning to play pool from the old shark. Hannah and Philip start school on August 28th. The Alaska cruise is August 31 - September 7. Anyone with recommendations about shore excursions PLEASE email me with them.

My crazy employer gave me a new contract and a raise and they are still being wonderful about flexible scheduling. The patients are still crazy but that comes with the territory. We have a new occ doc and so I am not having to do all of the drug screen medical reviews any more. Incrementally less entertainment (Cocaine?!? Shit! Someone must have laced my joint.) but infinitely less hassle, especially on my days off.

I am starting a secret project very near and dear to my heart, enjoying Robert's wonderful cooking, nearing the end of Henry James' Portrait of a Lady on my commute and raising money for the National Lung Cancer Partnership by walking in their Free to Breathe Walk in Glastonbury on September 21st. The hospital I work for is doing a story on me for the employee paper and hopefully for the newsletter that goes out to the community. The Rachael Ray piece airs on September 5th, the same day that the three major networks launch their Stand Up To Cancer program with a one hour on air fundraising special at 8 pm EDT. Life is good.

Lisa

What's Up With the Doc 20? - or Beating Anemia, Among Other Things

2008-07-23T17:02:00.000-04:00

7/23/08

Cycle #7 went without a hitch yesterday. I am bright red again due to the decadron but otherwise feel just dandy. My red cell numbers were better yesterday than they have been, I assume due to the iron I've been taking. I'm thinking that may be contributing to my higher energy level and my pulse yesterday was 75, down from the ~100 it's been running for the last couple of months.

I'm working today. Tomorrow is end of camp volleyball tournament at Wesleyan for Hannah, a little bit of administrative work time and then Philip to the orthodontist. Lindsay and her friends are coming up tomorrow and I'm off Friday so will be able to spend some time with them. Working Saturday and Sunday, which will be kind of gross, given that those are usually my not feeling very good days, but whatever. My stepdaughter is coming in Saturday afternoon and will be here until Wednesday. I leave Friday to take Hannah to another volleyball camp at George Washington University and I'll get to see my stepsister, Tanis, on that little excursion. Next chemo is 8/12. Next scan 8/26. Alaska 8/31 - 9/7, which will push off chemo #9 (!) by a week if we're still plugging along with it at that point.

Lisa

What's Up With the Doc 19? - or Something's Working

2008-07-15T18:24:00.001-04:00

7/15/08

I know I promised to recap New Mexico and THEN come back with scan results, but we got in at 1:30 am Monday and I've been working and exhausted. It's worth the wait, though. Today's CT scan report shows that the measurable lesion in the liver is down to 3.2 cm (from 5.4 on 3/13, 4.5 cm on 5/13 and 3.8 cm on 6/1) and the lesion in my lung (presumed primary) no longer has any solid component. Everything else is unchanged from prior scans. At this point it would definitely appear that I am ahead of cancer on the scoreboard so we'll keep trying to knock it silly with the current chemo regimen. No new or worse side effects and I've gotten so used to the bald look that I no longer scare myself every time I pass a mirror. That means chemo on 7/22 and 8/12 with another scan on 8/26.

As for New Mexico, I can't ever remember taking a better trip in my entire life. We arrived on Tuesday afternoon and went directly to Faith and Bruce's house. This was the first time I'd seen them since the diagnosis in March, so very big hugs were had all around. Once Emma got off work we went out to dinner at Monroe's, where I indulged in flat blue corn red chile enchiladas with a fried egg, a chile relleno with green chile sauce and a sopaipilla. I also stole some of Emma's flan for dessert. Robert ordered a margarita, not realizing that they only had a beer and wine license and so it was a wine margarita. Suffice it to say that we never heard the end of that insult! My stepbrother Bill, who timed a business trip to be able to spend some time with me, joined us for dinner.

We stayed in a beautiful bed and breakfast down the street from Faith's house where the grounds and architecture were classic NM adobe hacienda and the breakfasts were delicious. Bill and his brother Greer joined us there Wednesday night after a sucky Tuesday night in a Red Roof Inn.

Wednesday we went to see the clinic where Emma is working this summer and met the scary vet who is mentoring her. Well, scary to Emma. Not so much to me. I had my green chile cheese Lotaburger fix with my friend Earl, with whom I share 36 years of friendship, history, and things I'll never tell my mother. We sat and caught up for an hour and a half. Then I visited briefly with the woman who was my office nurse when I was in practice in New Mexico, lo these many years ago. Lindsay and Emma were just babies then so we caught up on everything that has happened in the last 20 years for both of us. Next was a stop at the New Mexico Cancer Center to see my friend Clark Haskins and get my counts checked. Counts were good, Clark was wonderful and gave us the nickel tour. Dinner that night was on Bill and Greer at Antiquity in Old Town. It was absolutely delicious, but more important than that, gave Faith and I time and opportunity to reconnect with them - life and grown up responsibilities have pushed our childhood memories and closeness into the background.

Thursday the golfers played golf and I had lunch with my friend Gayle who drove down from Farmington. She and Cindy colluded to make me the most beautiful quilt - evocative of the Southwest and perfect for the chemo chair. We shared gossip about old friends and colleagues, talked about work, and shared hugs and a few tears. Lunch was at Sadie's where I once again fed my flat blue corn red chile enchilada jones and had sopaipillas for dessert.

Later in the afternoon Mom drove in from AZ and Chris and Sheri drove down from CO. They were staying at a bed and breakfast that had a huge courtyard and patio so they went to El Modelo to pick up dinner to eat on the patio. They brought the best tamales on Earth, enchiladas, sopaipillas as big as dinner plates, but best of all a completely new thing to me - chile relleno burritos. MMMMMMMMMMMMM!

Friday Emma took the day off and we took it easy. She and Sheri and I hit Lotaburger for lunch. Dinner was at Maria's New Mexican kitchen in Santa Fe. They were reported to have the best enchiladas and margaritas in the state and I have to concur. I have never tasted red chile to compare and the margaritas were great. They also had the best flan I've tasted since the last time my mother made. My friend Claudia (the only friend I've had for longer than Earl) drove down from Los Alamos to meet us and had a ball catching up with my mother and Chris. We trekked up to see Falstaff at the Santa Fe Opera. It was really cold, but lots of fun. Robert and I followed Claudia up to her place in Los Alamos and everyone else headed back to Albuquerque.

Saturday Earl and his wife, Pamela, drove up. Pamela has the distinction of accompanying me on a wild and wacky road trip from TX to NY in 1982. We were in my '72 VW bug that had no starter and had my little dog, Sleazy, along for the ride. Enough said. We spent the day on the deck, gazing at the mountains and talking about kids, parents, love, cancer and these amazing longterm friendships that can pick up in a heartbeat without a moment of hesitation or ill ease.

Sunday Claudia drove me back down to Albuquerque for brunch at Garduno's, after which we left for the airport and home. I'm always sorry to leave New Mexico (definitely my heart's home) but it was orders of magnitude worse this time. I couldn't have asked for a more delightful few days of family, friends, gorgeous scenery and skies and FOOD.

So, really, the news all around couldn't be any better. Staying the course is the plan of the moment. Next on the travel agenda is Alaska after the kids start school again.

Thank you for all the good thoughts, prayers, and crossed fingers, toes, arms, legs and eyes. Keep up the good work!

Lisa

What's Up With the Doc 18? - or Wasn't This Supposed To Be It?

2008-07-01T16:16:00.000-04:00

6th chemo was today and was uneventful. Remember when I thought 6 was the most I'd get? I was all macho about how I was going to set a new record for number of cycles of Carbo/Taxol and the oncologist just laughed at me. He said, "We only limit to 4-6 for lung cancer. I published a paper on giving that combination to elderly patients for ovarian cancer and we gave many, many, many cycles to an octagenarian who tolerated it just fine. If you want to beat her, you've got a real marathon ahead of you." So I said, "Fine. We'll just hope that the stupid tumor cooperates."

Then we talked about what happens when we stop the Carbo/Taxol. Sloan-Kettering suggested continuing the Avastin and adding Tarceva. Unfortunately, that's not being done off protocol and I'm pretty sure my insurance will refuse to pay for both and both are disgustingly expensive. If I stay on the chemo until tumor progression it's not an issue because we'd stop the Avastin anyway, but if I stop because I've reached tolerance I'll have to ramp up the appeals process.

A man down the row of chairs from me got hauled out on a stretcher because of an allergic reaction today. Apparently, it caused quite a stir among the other patients but I was so dopey I really barely noticed the stretcher rolling out.

Friends are coming into town tomorrow and taking us out to my favorite restaurant. I work tomorrow but then I'm off for four days. Work Monday and then leave for NM on Tuesday. Clark Haskins is doing my count on Wednesday - I am so excited to see him! It's been over ten years. Next scan is July 15th and, if the tumor is still shrinking, cycle #7 on July 22nd.

This last cycle was completely uneventful and I feel great. My oncologist is loading me up with just in case antibiotics to take to NM with me. I'll see my sister, Bruce, my mother, brother, sister-in-law, best childhood friend and Emma while in NM, not to mention eating green chiles with every single meal. We're all going to the Santa Fe Opera together on Friday evening after dinner in Santa Fe and then Robert and I will spend Friday night and Saturday with my childhood friend in Los Alamos. NM is my heart's home and I haven't been there for 7 years so there is much happy anticipation.

If all goes well, you probably won't hear from me until it's time to recap the NM trip, followed closely by scan results. Keep all appendages crossed.

What's Up With The Doc 17? - or Happy Birthday to Me!

2008-06-20T06:38:00.003-04:00

6/20/08

This morning dawned bright and beautiful in Connecticut. I usually try my best to ignore birthdays, but this one seems like it deserves attention and special thanks. Even if it is THE BIG ONE. I will celebrate by working today. The kids at work are bound and determined to take me to lunch and have cake and sing. We'll see if the patients allow that.

As to the 500 pound gorilla in the room, this has been the least heinous of my chemo cycles to date. I have been sleeping well, pain was easily controlled and no fever. Yet. I can't believe I said that. The way my luck has been going...

Speaking of luck, my mother's luck window appears to be open. She cleaned up at MGM at Foxwoods yesterday and then proceeded to beat the rest of us in two rubbers of bridge last night. Someone's living right!

So tonight will be a great big birthday dinner party with Hannah, Philip, Lindsay, Jacob, Marta, Charlie, Bruce, Dottie, David, Anne, Robert and me. I am happily anticipating falling into the lap of family and friends after a long week at work to celebrate the dawning of my second half century. Tomorrow Philip heads for camp and the rest of us get to be completely lazy. Ah, summer.

Lisa

What's Up With the Doc 16? - or Finding a New Rhythm

2008-06-13T07:09:00.002-04:00

6/13/08

Chemo cycle #5 went without a hitch on Tuesday. We're trying a new symptom control regimen that includes steroids for three days after chemo, Ibuprofen during the day and oxycodone at night. So far, it seems to be a winner. I'm a little achy today, but nothing that will interfere with life in any significant way. The Neulasta last cycle kept my white count normal and didn't increase side effects significantly so we'll do that with every cycle from here on out. Honestly, there's not a whole lot of cancer news - next scan is after cycle #6 which comes on July 1st.

Last week was a whole lot of fun and games. Emma came to town for the great 21st birthday extravaganza. Lindsay came up to share in the festivities. My brother and sister-in-law showed up on Wednesday and did he ever have a surprise for me!:

We had a great visit and look forward to seeing them again in New Mexico next month.

Another school year is winding down and that means end of year concerts and recitals for Hannah and Philip. Finals are next week and then Philip heads out to music camp for a week. Hannah says she will be job hunting this week.

My mother and stepfather will he here next week for my great 50th (!) birthday extravaganza, but otherwise I'm planning to keep things low key this cycle and see if I can avoid the entire chest pain/fever drama that was no fun last cycle. I have no idea how many cycles of this Carbo/Taxol/Avastin I will eventually wind up completing, but I figure I'm at least halfway and it hasn't killed me yet!

Delightful weekend wishes to you all.

Lisa

What's Up With the Doc 15? - or More Fun With Cancer

2008-06-09T05:18:00.002-04:00

6/2/08

FUN WITH CANCER just keeps rolling right along. I had another dreadful
O'Hare experience Friday evening that involved gate changes, delays,
lies, lies and more lies about a fictional Cinnabon that resulted in
miles of walking. Bastards! By the time I was half way through that
process I had a moderately severe sore throat but made it home and into
my bed unscathed. I worked Saturday and that was OK. Then the hammer
fell. I woke up Sunday with right sided chest pain whenever I took a
deep breath and a dry cough. I took my beloved Ibuprofen on my way to
work - which made my shoulder feel better but didn't do much for the
chest pain. No fever but my pulse was 120. So I promised myself that if
it didn't get better by noon I'd go to the ER. Which I did. By the time
I got to the ER my pulse was down to 95 and I was cursing myself for not
waiting a little longer. They did counts (fine), a chest x-ray looking
for pneumonia (fine) and a CT angiogram looking for a PE (fine). Because
I didn't have and hadn't had any fever they didn't draw blood cultures
and let me go home - by which time my pulse was 82 and I had almost no
chest pain.

So then, brilliant a person as I am, I went home and launched into the
A/C zone control system that has been making our first floor a meat
freezer and our second floor a sauna. That was an hour and a half of
screw drivers, flashlights, breakers, up and down 2 flights of stairs to
push thermostat buttons, etc. Then dinner. Then Philip's birthday cake,
the decorating of which was an unmitigated disaster with purple
buttercream frosting slowly slipping down the side of the cake. This I
finished at about 9:45 and was miserable - exhausted, chest pain and
short of breath. I cleaned up, went upstairs, changed into PJs and
checked my temperature. Voila! 101.1. So I had to call the on call
doctor. We hashed around alternatives and decided to start the
antibiotic my oncologist has me keep on hand for just such circumstances
and now I'm at work, no fever, feeling better than last night but now I
have a headache, and waiting for the oncologist to call.

Tomorrow I'm supposed to drive to Philadelphia with Emma to look at the
UPenn Vet School, something which I am looking forward to with much
happy anticipation and feel like I'm probably going to have to fight
with the oncologist about.

Silver lining - CT angiogram was on the same machine and read by same
radiologist as my follow up scan on 5/13.

5/13 - largest liver lesion 4.5 X 4.0 cm
6/1 - largest liver lesion 3.8 X 2.7 cm

Woohoo!

What's Up With the Doc 14? - or The Definition of Tolerance

2008-06-04T12:08:00.004-04:00

5/28/2008

OK, I've talked to my Albuquerque oncologist friend (AOF) and processed all of the information from the last couple of weeks and I think I'm ready to recap for all of you breathlessly waiting. I can't believe I keep crying every time I talk to AOF. Maybe it's because he's on the phone and not in person and it's safe with him, I don't know.

Basically, the MSK guy said that for people responding to the Carbo/Taxol/Avastin (meaning tumor shrinkage, not just stable disease) his policy is to treat to tolerance. AOF concurs with this. But here's the reason I love AOF so very much. I asked him what the most number of treatments of Carbo/Taxol/Avastin he's ever administered and he said 10. Which made me whimper. And then he said, "But I never tell my patients I'm treating to tolerance. I tell them let's do 2 more and see where things stand." He said I have to live in the 2 cycle place in my head and then he asked me what problems I'm having with the chemotherapy. I said that it's those 3 or 4 days of pain after the chemotherapy that just really do me in. He responded that it should be better treated because the tolerance reasons to stop the chemotherapy are neuropathy, fatigue (as in can't get out of bed for more than a couple of hours a day) and weight loss. Everything else that I don't like should be treated as a nuisance side effect. He told me to take narcotics every night while the pain is bad and pump up my bowel regimen. He said what everyone else says about the neuropathy - that I'm not likely to get any of that back so not to let it go too far. I've started with a little numbness in my toes over the last couple of days and intermittent fingertip tingling. I don't want to let it get to the point of interfering with examining patients, writing, typing or playing the piano. As for the feet, I need not to let it get to the point of stumbling. The fatigue and weight loss are not issues for me so the neuropathy is likely to be the thing that determines just how many cycles I get as long as I keep responding.

Once we're done with this chemotherapy the MSK guy says that their policy is to start the Tarceva right away, not wait for disease progression and my oncologist agrees with that. That was new to AOF but he sees why they do it and would go ahead with it.

And then we got to the crying. Because, while the Tarceva doesn't sledgehammer the entire person like the Carbo/Taxol does, it has its own little issues (rash and diarrhea) and I would still be on the Avastin (bloody noses, bleeding hemorrhoids and a chronically nonhealing port wound). So, basically, I don't get my old self back. Ever. While treatments are working I have a chronic disease and get to live with the side effects of the medications. Once treatments stop working I get the effects of the illness and, pretty quickly, I lose the whole shooting match.

AOF told me to stop being a doctor and start being a patient. He said to try to live my life in 6-8 week increments (6 while I'm the C/T/A and getting scans after every other cycle and 8 once I'm on Tarceva and getting scans every two months). He reminded me to optimize the right now because it's all any of us really has. And he tipped his hat to me for keeping at the fight.

So today the pain is almost completely gone. Tomorrow I get to go see friends in Illinois. Saturday Emma comes home for a week. The sun is shining and life is good.

Lisa

What's Up With the Doc 13? - or The Neulasta Chronicles

2008-06-04T12:07:00.003-04:00

5/22/2008

Cycle #4 is in the books. This Neulasta has become quite the boondoggle. My chemo nurse spent most of yesterday on the phone with my insurance company. First, they spent hours trying to figure out whether it would be covered under my prescription plan or major medical. Once they decided that it's covered under major medical, they said I could only get it in a doctor's office. Pharmacies can't, apparently, bill under major medical. So I talked to the oncologist before they started the poison today and we decided to just go with Neupogen again and set up the appointments for the next two weeks. Then, in the middle of chemo, I got a call from the Aetna Specialty Pharmacy saying they were trying to arrange delivery of my Neulasta?!? So I arranged to have it delivered to Lindsay's apartment tomorrow so I can give it to myself when we get there tomorrow evening. It's a doorman building, so there will be someone there to sign for it. It should work, in theory, but I'm not canceling my Neupogen appointments until it actually does work.

Oh, and I have been receiving reduced doses of Taxol because of my liver wonkiness and today I got the full dose! Take that, adenocarcinoma!

Lisa

What's Up With the Doc 12? - or Neutropenia Strikes

2008-06-04T12:06:00.003-04:00

5/21/2008

I got myself all revved up for chemo cycle #4 and was denied when my white count was too low. I got a shot of Neupogen yesterday and we'll try again tomorrow. It actually works out OK, because Friday is supposed to be 12 hours of driving and I'll feel fine the day after chemo, whereas 3 days after chemo I'm usually a wreck. We're going back to Neulasta (basically nine doses of Neupogen in one very expensive shot) to try to prevent this from happening again. I get to give it to myself because it's given 24 hours after completion of chemo and I'll be on the road. I'll have a nice three day Memorial Day weekend to enjoy Lindsay and Jacob and recover from chemo, Neulasta and all that driving. Happy Memorial Day to you all!

Lisa

What's Up With the Doc 11? - or Today is Better than Yesterday

2008-06-04T12:05:00.004-04:00

5/20/2008

I've said how much I love my oncologist, right? He just called. He took all of my scans downstairs to the radiologist that did my chest CT angiogram on 3/25 to review and compare. Their final determination is actually a 33% improvement of the largest liver lesion - from 6 cm at its worst to 4 cm now. Woohoo! I even meet RECIST criteria for partial response! He also talked to the thoracic oncologist I'm going to see at S-K and they concurred on the plan - complete 6 cycles of this chemo and repeat a scan. Depending on how things look at that point we will either continue Avastin alone, add Tarceva to the Avastin or switch from Avastin to Tarceva.

Yay! Response! Plan!

Lisa

What's Up With the Doc 10? - or A Little Response Is Better Than None

2008-06-04T12:04:00.004-04:00

5/15/2008

Since my last update on May 2 I've had a couple of Neupogen shots and taken a course of antibiotics and I'm feeling very well. My oncologist called on Monday to let me know that my liver function tests (AST and ALT) drawn on Friday, May 9 were both normal (22 and 36), which was good for a great big cheer since that's the first time since November that they haven't been even slightly elevated. I had my first follow up scan Tuesday and the results are a little puzzling. I had the scan at the hospital where I work for insurance reasons, so comparison is a little dicey. As best the oncologist and I can tease out, it looks like a 15-20% response in the size of the largest lesion in the liver. I have to get all my discs to him so he can take them for a face to face comparison with the Yale radiologists because if there really is no response he would not do the 4th chemo treatment next week.

I think we will wind up proceeding with the chemo next week because the improvement in the liver function tests is supportive evidence for decrease in the size of the liver lesion. Then I'll take my whole pile of scans, lab reports and chemo summary to Sloan Kettering a week later on the 27th to find out what courses of action are available at this point. At the very least, the chemo has given us some breathing room to evaluate treatment options by knocking the liver function tests down to the point where I am once again eligible for clinical trials.

So I'm a little deflated because it certainly doesn't look like a great big old complete response is in the cards for me. But I still feel pretty normal except without hair and can pursue all the life activities that ever interested me so maintaining that for as long as possible seems to be the goal to shoot for at this point.

There's lots of that life stuff on the near horizon for me, too. Friends will be visiting from Oregon this weekend. Next Friday I travel to Podunk, PA to see Lindsay's last show and BRING HER HOME. She and Jacob will spend Memorial Day weekend in CT with us. May 29th I travel to Chicago for a meeting and hooking up with my Chicago homies. May 31st Emma gets here for a week and my brother and sister-in-law pop in to help celebrate her 21st birthday. Mid June sees my mom and stepfather in town for a visit. NM beckons the second week of July. Man, I'm exhausted just typing it! But much fun will be had all along the way.

Thanks, as always, for all the love, support, thoughts and prayers. I'm putting them all to very good use.

Lisa

What's Up With the Doc 9? - or BOOYAH!!!!!!

2008-06-04T12:03:00.002-04:00

5/2/2008

Well, I guess all I had to do was complain about my stupid liver function tests. My friendly chemo nurse, Kim, called to say that my oncologist wanted to be sure I knew that my AST drawn yesterday (2 days after chemo when it was 43 with upper limit of normal of 42) was 28!!!!!!! Normal, really normal, for the first time since before this whole mess started. ALT (71 on chemo day with upper limit of normal around 40) was 53, so not quite normal but lower than the first test at diagnosis when it was 58. So, yes, loud cheers would be appropriate.

For you Loyola folks, I will be in Chicago Friday, May 30th for the annual meeting of the National Lung Cancer Partnership. The meeting ends downtown at 12:30 and I have a 7:30 pm flight out of O'Hare so I'm planning just to head out to Loyola for lunch and visiting.

Dr. Frye, I know that Dr. Albain is VP of the Board of the NLCP. I have given the NLCP and my current hospital permission to use my Rachel Ray appearance for any PR stuff, lung cancer awareness, etc. that they'd like. If Loyola wants to do anything along those lines about a former member of the family, I would be fine with that. I don't have an air date for the show yet but hopefully will by the end of next week.

Everyone have a delightful weekend, because I sure am going to!

Lisa

What's Up With the Doc 8? - or Riding the Rollercoaster

2008-06-04T12:02:00.002-04:00

5/1/2008

The rollercoaster that is my life keeps right on rolling. Thursday we left for Texas. I had my stupid AC joint injected on 4/9 because it hurt like a mofo and orthopod said he'd give me as many steroid injections as I want because the cartilage is toast already. I had about a 75% improvement until I carried my suitcase on the right side Thursday morning and OMG! I thought I was going to die right through Sunday afternoon. Friday and Saturday I was taking maximum doses of Ibuprofen, which I'm not supposed to do because it can make my GI tract bleed (which is a very bad thing due to the Avastin part of my chemotherapy) and because it could mask a fever. I cut down to 600 mg three times a day on Sunday, took my last dose at 10 pm Monday night and woke up at 3 am Tuesday with a fever. It broke by early morning and I woke up fine with very little pain in the shoulder and no fever. I didn't take any Ibuprofen. When I got home after taking the kids to school I felt exhausted with a mild headache. I slept until I got up and ate on my way to chemo.

When I got to the oncologist's office (where the Rachel Ray film crew was waiting, BTW), my temperature was 100.3. I went round and round with the oncologist. He wanted to hold off a day or two on the chemo and wait for blood culture results. I argued that my white count was great and I wasn't really immunocompromised right at that minute (Tuesday) so if they started empiric antibiotics that day I should be able to fight off anything that's percolating before the neutropenia hits next week. He reminded me that I would be getting a big dose of steroids with the chemo which will screw up my immune system. In the end he agreed to go ahead with the chemo on Tuesday, start the antibiotics and see me today and maybe give me some Neupogen early. I felt much better by about halfway through chemo and my temp was normal by the time I was done - but that may have been the Decadron.

My fever has stayed gone since Tuesday afternoon and I woke up Wednesday with a rip roaring cold, so I think a respiratory virus accounts for the fever and I'm glad we went ahead with the chemo on Tuesday. Today is day #1 of my usual three days of yuck after chemo. Everything hurts, including sharp, shooting head pains. I'm queasy and still snotty from my cold. But, hey! I'm alive.

For those following the liver function test saga - AST is 43, ALT is 71, Alk Phos is mid 200's. Still getting better but I'm getting annoyed that they're not just normal already.

Follow up scan is scheduled for Tuesday, 5/13. Sloan Kettering visit is 5/27 (after chemo #4 on 5/20/08). More important than that, The Rachel Ray Show is sending a car to pick me up next Tuesday and take me into NYC for the in studio taping. I should have an air date a few days after the taping and I PROMISE I'LL TELL EVERYONE AS SOON AS I KNOW!

Today I'll try to distract myself from the yucks with the following: doctor's visit, lots of laundry, passport picture and mail in renewal application, pick up all scans and slides for various doctor's things upcoming. I work the weekend so I have today off. It's beautiful in Connecticut but NOT WARM so please send warm thoughts our way and, as always, keep your cancer killing thoughts and prayers coming.

Lisa

What's Up With the Doc 7? - or Rallying the Troops

2008-06-04T12:01:00.005-04:00

4/20/2008

Good morning!

First, I'm feeling great. It certainly helps that I didn't screw up and take steroids instead of acid reducers like I did at this point in the last chemo cycle. So right at this moment, except for the fact that I have no hair to speak of, I feel exactly like I did two weeks before this monster was diagnosed - no pain, no nausea, great energy level and all smiles.

Yesterday my Medaris cousins drove up to have lunch and shoot the breeze with me. I'm not sure it's really safe to have that much kick ass and takes names later mojo in one room for very long, but it was a delight to see them and catch up on kids and parents and life in general.

But the real purpose of this email is to ask a small favor of all of you and your friends.

The National Lung Cancer Partnership has put an online petition up to encourage increased federal funding for lung cancer research. I ask you to take a look, and, if you will, to sign it.

A social stigma is attached to lung cancer that seriously impedes funding and advocacy, although many patients -- like me -- are lifelong nonsmokers, and even those patients who have smoked do not "deserve" to be punished with this terrible disease. Today, lung cancer research is only funded at the federal level by the National Cancer Institute (NCI). This is in contrast to many other common cancers which receive funding from several different federal funding agencies. Lung cancer receives considerably less research funding (about $280MM) from NCI than either breast ($570MM) or prostate ($310MM) cancer. If you translate that into research dollars per death from cancer, NCI estimates that in 2005 it spent $1,708 per life lost to lung cancer; $13,947 per death to breast cancer; and $10,214 per prostate cancer death.

The petition can be found at:

http://www.nationallungcancerpartnership.org/index.cfm?page=online_petition

The first ever United for Lung Health Federal Advocacy Day will be held on May 13-14 in Washington, D.C. and I'm sure a bump in petition signatures will be something good for the advocates to have in their pockets. I won't be able to make it this year, but hope to be there with bells on my toes and fire in my belly next year.

Well, I suppose I've procrastinated long enough. Time to scale the mountain of laundry that's glaring at me.

Lisa

What's Up With the Doc 6? - or It's All Good

2008-06-04T12:00:00.003-04:00

4/15/08

Today was the background taping for the Rachel Ray Show. I had my blood drawn first thing this morning and then Hannah and I drove into NY, where we spent about 4 hours being bored to death. The producer interviewed me, then I talked to the designer . Then everyone else packed up and headed to the workshop and Hannah, Lindsay's husband and I headed back to CT.

All the cancer news is still good. My white count is low normal today so no Neupogen. AST, ALT and alk phos are all better than a week ago (AST is almost normal!). OK, for you number followers - WBC 3.4, K 5.4, AST 41, ALT 87, Alk phos 294, BUN 32. One of my kidney tests is a little high, as is my potassium, so I'm supposed to be pushing fluids. I feel fine and hopefully will stay that way until the next round of chemo on the 29th.

Keep the good thoughts and prayers coming. They seem to be doing the trick.

Lisa

What's Up With The Doc 5? - or 2 down ? to go

2008-06-04T11:58:00.003-04:00

4/8/2008

Chemo cycle number 2 is in the books with no problems. We're going to forego the Neulasta this cycle and just do Neupogen if my white cells get too low so hopefully I can avoid those two nasty days at the end of the week. I talked to the oncologist for quite a while about what to expect after the chemo is over. He's planning 6 cycles of the carbo/taxol/avastin (so July 1st would be my last). The only 2 things that would change that would be evidence of disease progression when we do a scan after the 3rd or 4th cycle (I don't expect that with the positive trend in the liver function tests but I have to know what the decision points are) or intolerable side effects - unlikely since I made it through the first cycle handily. The big question is what then? If the scan shows no evidence of disease (please) the options, as far as I can tell, include watchful waiting with no treatment, continuing the Avastin by itself, switching to Tarceva, or the clinical trial route. There was not enough tissue to run the test for the EGFR mutation so with Tarceva I'd just have to hope that I'm one of the 65% perent of nonsmoking women who respond. I'm still planning a trip down to Sloan Kettering after the 4th treatment to get their take. I can pretty well guess that there will be much gnashing of teeth and weighing of alternatives and I hope it doesn't come down to the old dart board method of treatment selection.

Mostly I hope for good luck to go with my good underlying health, good socioeconomic status and world class medical advice. I hope this is a really responsive tumor and my anguished decisions are all about keeping it gone. I really wish I had a crystal ball because all of this uncertainty sucks.

I'm likely not to sleep too much tonight thanks to the Decadron so I'll spend my awake time on cancer destruction imaging. I really appreciate more than I can ever say the cards and emails you are all sending. It keeps my chin up and the smiles coming. And, as always, thank you for every prayer and good thought you can spare.

Lisa

What's Up With The Doc 4? - or Hairless but still smiling

2008-06-04T11:57:00.003-04:00

4/5/2008

After what I can only describe as a shower hair experience of biblical proportions yesterday morning, I had Robert take me to his friendly barber to take the clippers to my head. It was a relief. So here is the yet again new me:

http://tinypic.com/view.php?pic=sqtqu8&s=3

Nothing else new to report - feeling well, working and looking forward to round 2 on Tuesday.

Joyous weekends all around on me!

Lisa

What's Up With The Doc 3? - or All Hail Carbo/Taxol/Avastin

2008-06-04T11:54:00.004-04:00

Well, I called my oncologist yesterday to make sure he was OK with the little rhythm I've fallen into - taking Ibuprofen every 6-8 hours to manage body aches, mild chills and daily temperature elevations to ~100.5F. I told him about calling the on call doc over the weekend and starting Cipro and wanted to make sure he was cool with everything so we'd be all set for chemo #2 on Tuesday. Boy, did I get a virtual finger wagging from him! I asked, "But can't the little fevers and aches be from tumor lysis?" He responded, "Of course they can, but they can also be from an infection and the Cipro doesn't cover gram positives and you've got a port and I would have seen you any time. I want you to have counts, chemistries and blood cultures drawn from the port and blood cultures drawn peripherally and call me tomorrow."

So I did all that and...

Counts are normal.

Liver function tests are even better than they were last Tuesday!!!!!!!

AST 55 (3/5 46, 3/17 133, 3/25 101)
ALT 140 (3/5 58, 3/17 273, 3/25 282)
alk phos is higher but it's very nonspecific.
bili still normal
LDH normal (never checked before and I was way worried about it)

When I talked to my oncologist friend in NM about this protocol just after my oncologist recommended it he was really up on it. He said that he's had a number of patients achieve complete and sustained remissions. So I asked him how long it takes to know if someone is going to respond that way and he said that those who go into remission do it fast - they can tell with the first or second cycle.

My oncologist is a little more conservative in talking to me about what to expect - he won't refer to remission with this tumor, only disease control, and he won't check for tumor response until after the 4th cycle. My oncology nurse friend in Portland also has someone close to my age, build and performance status who shows no evidence of disease with the same cancer 9 months after treatment with this regimen.

So there's a big part of me doing a great big Snoopy dance right now, coming out from under the pall that this diagnosis threw over me. During my residency this diagnosis was a death sentence and it's just going to take me a while to adjust to thinking of this as a chronic disease that I can manage (with a little help from the oncologist).

Keep the good thoughts, prayers, etc. coming!

Lisa

What's Up With the Doc 2? - or Where Did All The Hairs Go?

2008-06-04T11:52:00.002-04:00

4/1/2008

So my hair started coming out in handfuls yesterday and I decided I didn't want another shampooing experience like this morning's so I visited my friendly stylist today and we took step one. I call this Jamie Lee Curtis on the way to Demi Moore:

http://tinypic.com/view.php?pic=2ia7n8m&s=3

I'm still having aches and pains and low grade temperature elevations - all pretty well controlled with Ibuprofen (and Cipro after the Decadron debacle). Still doing OK with work and running kids around.

Through weird and wonderful and crazy turns of events it looks like I'm going to be on The Rachel Ray Show for something tangentially related to the cancer. I'm hoping to get 5 seconds to speak my piece about lung cancer and point viewers to The National Lung Cancer Partnership for information and donations for original research. More about that as it becomes available.

I'm in good spirits - visualizing cancer cells floating on splintered pieces of wood crying for help as the sharks circle. Keep all the good thoughts and prayers coming.

Lisa

What's Up with the Doc? v.1

2008-06-04T11:32:00.001-04:00

3/29/2008

Dear Family, Friends, and not elsewhere classified (NEC) Loved Ones,

My Dad and Katie sent me a book called Crazy, Sexy Cancer Tips and one of the tips was an email list to keep loved ones up on what's going on without having to call or write a hundred people every time. So this is the inaugural message to my mail list! Anyone who would like to be removed from the list, please let me know. Thanks for the book, Dad and Katie!

So since this is the first, I'm going to put the whole diagnosis story in and let everyone know where things stand right now. On February 29th I went to see my internist because I had had six whole days of mid/upper back pain which just didn't seem like the mechanical back pain I see and treat all day every day. She agreed, checked a urinalysis and ordered a CT because she thought it might be an atypical kidney stone or gallbladder disease. The CT was on Tuesday, March 4th, and I will always feel sorry for her having to make that phone call. You can sugar coat things like "T10 lesion, right adrenal lesion and three lesions in the liver" to a lot of patients, but she knew I would know what was up. She had already scheduled MRIs of the Tspine and abdomen/pelvis and spoken with an oncologist when she called me Tuesday afternoon. I had the Tspine MRI on Wednesday and had blood drawn for chemistries. I had had a completely normal annual physical with chemistries in November. Now my AST was 46 and my ALT was 58 (both slightly elevated - less than twice normal). Everything else was OK. The Tspine MRI showed a cystic lesion in my right upper lung so they added a chest CT to the abdomen/pelvis MRI on Thursday. I saw the oncologist Thursday afternoon. We sent discs of all the scans to the interventional radiology department at St. Raphael's Hospital and on Friday I had a CT directed biopsy of the Tspine lesion. Monday the knew it was an adenocarcinoma. Tuesday the TTF1 stain was positive so presumptive lung.

My oncologist recommended Carboplatin/Taxol/Avastin chemotherapy and wanted me to get a port put in and start the next week. I was put into contact with a thoracic oncologist at Sloan Kettering who suggested that Tarceva (a targeted therapy that is an epithelial growth factor receptor inhibitor, oral and less toxic than the chemo my oncologist had recommended) was probably the best option for me. I made an appointment to trot down to Sloan Kettering on Friday, March 21st. My oncologist was worried about my liver function (if too high it would disqualify me for any clinical trials, Tarceva and even the Taxol component of the chemo he had recommended) so I agreed to proceed with the port on Monday, March 17 and a recheck of my liver function tests. Unfortunately, they had shot up in 12 days (for those of you reducing this to an Excel spreadsheet (yes, I'm looking at you, Chris!) the total bilirubin was 1.5 (up from .5), AST was 133, ALT was 273 and alk phos was 280). He spoke with the guy at Sloan Kettering as well as my old friend Clark Haskins in Albuquerque and all agreed it was time to proceed with the chemo.

Emma came to Connecticut for spring break and was my chemo buddy that first day. Three hours for the Taxol, 30 minutes for the Carboplatin and 90 minutes for the Avastin and that was AFTER premedication with Zantac, Decadron, Benadryl and Aloxi. I felt fine that day and Wednesday. Wednesday afternoon I got Neulasta to boost my white cell production and felt like I'd been run over by a truck on Thursday and Friday. Oncologist restarted Decadron for a couple of days and by Saturday I was functional again. No nausea to speak of. Awful, terrible heartburn (I guess I'm finally making stomach acid with this little stressor in my life) so I started Protonix on Wednesday, then pulled a chemo brain boner and took Decadron instead of Protonix (the bottles look the same, I promise!) on Thursday and Friday so I was awake all last night and miserable. Starting to settle down now that the Decadron is in a different drawer.

Chemo will be every 3rd Tuesday for four courses and then we'll recheck a scan to look for disease response. I do plan to head down to Sloan Kettering at whatever point there is a new treatment decision to be made (more chemo? Tarceva? Study drug?).

I saw the oncologist for a followup on Tuesday and I am cautiously optimistic because the total bilirubin was down to .34, AST down to 102 and ALT and alk phos were essentially stable at 282 and 381. So a little bit better 7 days after chemo after that awful 12 day run up was a big relief.

The odds for this cancer are pretty dismal (<15%>65% chance of responding to Tarceva even if disease progresses on or after the three drug chemotherapy. It's really all about trying to manage a chronic disease, as best I can tell. I keep reminding Robert that, while I don't have the common sense of the average woodchuck, I tend to score in the 99th percentile on standardized tests so that's what I'm aiming for - to be a rare case of prolonged remission.

The other thing that has become clear to me over the last few weeks is that, while I harbor these stupid cancer cells, you all have this cancer with me. Those of you who elect to stick with me through this are voluntarily opting for fear, frustration and potential pain. I'm just playing the hand that was dealt me. So thank you and take care of yourselves.

The next time there will be any information about how things are actually going will be at the end of May, after the 4th chemo. I'm still at work and they are being wonderful, supportive and flexible. The Medaris cousins are coming up for lunch in mid-April. Robert and I are heading to Dallas the last weekend in April for my 25th year medical school class reunion dinner. We will also get to see my dear friends from the chemistry and biology departments at SMU, Lindsay (who will be in North Texas with the show she is currently touring), Lynn, the Pierces and Robert's aunt. End of May, early June will bring Chris, Sheri and Emma to Connecticut (Emma is finally turning 21 - why does it seem like it has taken 37 years? and Philip is turning 14). I plan to head for NM in mid-July to catch up with Emma, who will be shadowing Faith's vet for the summer, Faith and Bruce, Claudia and anyone else who finds themselves in the Land of Enchantment around that time. I will also catch some beloved opera in Santa Fe. Depending how things are going late August/early September, Robert and I will try to take an Alaskan cruise - the one thing I have really, truly dreamed of and don't want to leave this life without doing.

I think that's it for now. I promise I will call on you when I need something and keep you up with the news. We'll do our best to answer phone calls as they come. I love you all more than I can say.

Lisa