Thursday, December 10, 2009

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

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

Monday, November 30, 2009

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

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.

Monday, November 16, 2009

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

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

Monday, November 9, 2009

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

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.

Friday, October 30, 2009

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

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

Friday, October 23, 2009

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

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

Wednesday, October 14, 2009

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

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.

Saturday, October 10, 2009

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

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

Friday, October 2, 2009

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

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

Thursday, September 24, 2009

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

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

Friday, September 18, 2009

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

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

Thursday, September 10, 2009

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

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.

Thursday, September 3, 2009

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

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

Saturday, August 29, 2009

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

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

Friday, August 21, 2009

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

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!

Saturday, August 15, 2009

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

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

Thursday, August 13, 2009

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

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

Wednesday, August 5, 2009

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

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

Thursday, July 30, 2009

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

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

Thursday, July 23, 2009

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

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

Wednesday, July 15, 2009

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

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.

Thursday, July 9, 2009

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

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.

Wednesday, July 1, 2009

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

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

Thursday, June 25, 2009

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

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

Wednesday, June 17, 2009

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

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!

Thursday, June 11, 2009

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

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!

Tuesday, June 2, 2009

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

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

Thursday, May 28, 2009

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

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

Wednesday, May 20, 2009

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

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

Thursday, May 14, 2009

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

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.

Thursday, May 7, 2009

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

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

Wednesday, April 29, 2009

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

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

Saturday, April 25, 2009

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

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

Wednesday, April 22, 2009

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

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

Saturday, April 18, 2009

Daffodils

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

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

Wednesday, April 15, 2009

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

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.