Tuesday, December 30, 2008
On the cancer front, I had my first Alimta treatment yesterday. My oncologist and I decided to just go with single agent Alimta and see what happens. That's how it's approved for second (really third line, in my case) treatment. Today I have a wee headache and I'm the slightest bit queasy. I'm back at work after my Christmas trip (more on that later). The pharyngitis/esophagitis from the radiation therapy is finally acting like it might eventually go away. Up until the end of last week I was requiring 800 mg of Ibuprofen every 8 hours, 10 mg of oxycodone at bedtime and another 5 when I awoke in pain in the middle of the night. Now I'm down to 400 mg of Ibuprofen every 8 hours, which is good, since Ibuprofen can increase absorption of Alimta. It still hurts to swallow but it's down to about a 6 from the worst when it hurt all the time and was probably a 9 with swallowing. My neck and back pain are gone or at least completely managed with moderate doses of Ibuprofen. Next scan is I don't know when as long as I tolerate the Alimta and feel OK. My oncologist doesn't want to rush into treatment decisions at this point, since there aren't any FDA approved treatments after third line so we want to give the Alimta the best possible chance to work.
After refusing to travel over Christmas since my oldest child was born (23 years) we were blessed with excellent air travel luck both on the 24th and 28th. No missed connections, no long delays. We got to Albuquerque early in the afternoon on Christmas Eve where we joined my brother and his wife, my sister and her SO (at her house), Lindsay and her husband and Emma for food and egg nog and good cheer. We spent the night at a bed and breakfast and went back to her house on Christmas morning for presents. Then we went back to the B&B where my SIL made a wonderful breakfast for us and then my kids all headed for Santa Fe to their dad and his family. I took a nap and then we headed back over to my sister's house where we had Christmas prime rib with my sister and her SO, my brother and SIL, my mother and stepfather, SIL's son and fiance and sister's SO's father and sister. It was heavenly (even though it hurt like hell to swallow - taste wasn't affected). Friday we pretty much just hung out and gabbed and then we headed to Santa Fe for my mother's 75th birthday dinner. The margaritas were awesome! I had a blue one called the Turquoise Trail as well as one of their 100% agave specials. The red chile was wonderful. The entire restaurant sang to my mother and we enjoyed 2 of my childhood friends and one of my sister's who were all kind of adopted by my mother. My kids came back to Albuquerque with us after the restaurant and we went to see Marley and Me. Saturday we had breakfast and then just hung out with the family. We ordered BBQ in for dinner. Sunday we got up bright and early and headed for the airport and made it home before too late Sunday night.
Now I guess I'm not supposed to challenge the Christmas travel gods for another 20 years.
Overall I'm feeling about 75% but still at work. Volleyball travel starts in 2 1/2 weeks.
Happiness in the New Year to all.
Friday, December 12, 2008
The other thing to be dealing with right now is what’s next. I think I will probably be starting third line treatment with Alimta when I get back from my holiday trip to New Mexico at the end of December. My oncologist would like to combine that with Avastin but the insurance company has so far denied the combination. I’ve filed an appeal and we’ll see where it goes. My understanding about Alimta is that I should tolerate it pretty well and should be able to continue to work and live my life if I was able to do so on my previous chemotherapy regimen. It will feel good to be doing something to fight the cancer again.
I finish radiation therapy next week, work for a couple of days and then head to New Mexico with my family for Christmas. I am over the moon about this. I graduated from high school in New Mexico and did my residency there but moved away in 1989. It is where my heart, my sister and my best friend are. My family will all be there and my mother enjoys a big milestone birthday on the 26th for which we will all gather at our favorite restaurant in Santa Fe and celebrate the great woman that she is. There couldn’t be any better way in my mind to finish out this rotten year than with my family in the high desert
Thursday, December 4, 2008
My hospital was amazingly accommodating - they added me onto the schedule yesterday morning and called all over the place to get my lab results from the day before so they could give me the contrast dye. After they deaccessed my port and I got dressed the reading radiologist invited me into his office to go over the scans. The C5 lesion is definitely larger and has broken through all kinds of cortical plates since September, there is a new C4 lesion, the T11 lesion is larger (accounting for the recurrent midback pain), the liver lesion is slightly larger and the adrenal lesion is definitely larger. Pretty definitive evidence that the Tarceva is not working, which is not so great, since that's one of the few things I was pinning hopes for odds beating on after I didn't get a complete response on Carbo/Taxol/Avastin.
Even more impressive than the whole faster than fast getting the scan done and read, I was in the radiation oncologist's office at 2:00 pm yesterday and had my first treatment to the cervical and thoracic spine lesions at 4:20. I had to negotiate a bit to run back over and take care of my afternoon patients after they did the simulation and were setting the machine up to treat me but I, of course, won out. There will be 10 treatments on consecutive business days. I'm back on steroids to prevent problems from swelling in response to the radiation. They said upwards of 70% of patients get very significant if not total pain releif from the radiation therapy and it usually occurs at about two weeks. Meanwhile I'm all about Ibuprofen during the day and oxycodone at night.
Overwhelmed by the neck pain. I've been fighting with this since September and it beat me yesterday. Now that I am no longer in denial about its source and on treatment that is likely to give me significant relief I can hold the overwhelms at bay and deal with it for a couple more weeks.
Disappointed that the Tarceva gave me no benefit.
But definitely not dead yet. My oncologist will be mulling next steps and we'll move on to the next chemotherapy regimen after the radiation treatments are done. I had to cancel my two day CME trip to Boston today and tomorrow but that means I have the next five days without clinical responsibilities where I can pretty much do whatever my body feels like doing. I should get enough relief from the radiation therapy to be able to enjoy the NM trip to the fullest (including egg nog and margaritas if I time the whole chemo thing properly). I still have a low tumor burden, still have an excellent performance status, and don't feel like I'm on borrowed time yet.
That's what's up with the doc this week. You can all look forward to the radiation therapy monologues as I experience yet another piece of the cancer patient pie firsthand.
Lots of love,
Wednesday, November 26, 2008
My family all know that Thanksgiving has been my favorite holiday since I was a little kid. It’s all about family and food without any commercial ties. I torture my family every year by forcing everyone to say at least one thing they are thankful for before they dig in to all the goodies at the dinner table. Although this is my first Thanksgiving with lung cancer, I find that I have a very long list of blessings for which I would like to give thanks.
I am thankful for my eldest daughter - beautiful, creative, talented, smart and devoted to her parents. She stands up for me when I don’t stand up for myself and finds ways to show love and care even during the times I don’t need it.
I am thankful for my #2 daughter - beautiful, doggedly persistent, smart and my science buddy. We have been through the mill together as mother and daughter and I am grateful to her for grasping the reins of her life and following her dream.
I am thankful for my #3 daughter - beautiful, wicked smart, athletically gifted and bossy as all get out. I get such joy out of watching her very willfully build her life and I am very grateful that she lets me watch, rather than pushing me away as I did my mother.
I am thankful for my son - tall, smart, funny and so very affectionate. He’s just really starting to show the first glimmers of what his independent adult self will be all about and I think he is going to be such a good man.
I am thankful for my husband - smart, funny, and with more integrity than any other human I’ve ever known. His devotion to and care for me are a comfort and delight and his children have brought immeasurable grace into my life.
I am thankful for my mother - she who led by example the way to being an independent and capable woman as well as a loving and supportive mother.
I am thankful for my siblings who share my history and my future, who love me and my children, who understand that love is immortal, even if the physical being is not.
I am thankful for my oncologist, who listens and considers and does the give and take necessary in doctoring a doctor better than I ever could.
I am thankful for the fact that there are treatment options available for my cancer.
I am thankful for the entire community that provides support to me - my family, friends, and coworkers both in the flesh and in cyberspace - and all the good thoughts and prayers and hopes that they offer to the universe on my behalf.
And I am unspeakably thankful to have this day and every day that I wake up and see the sky; each perfect day that is now a gift that might not have been.
Tuesday, November 11, 2008
I also went into the oncologist with questions about locally treating the two lesions that have caused me problems and are most likely to do so in the future - the one in my thoracic spine and the one in the middle of the liver. Bottom line - no one will treat the one in the middle of the liver because it is right in the middle of all the major blood vessels in the liver. It's also my only measurable lesion so at least we'll still be able to measure! He doesn't want to radiate the one in the thoracic spine because it's not causing me much trouble (and my friendly spine surgeon looked at it and assures me that I'm not at any risk of structural (fracture) or neurologic compromise as things stand now). Radiation can cause decrease in bone marrow reserve and the oncologist wants me to have as much of that as possible to be able to deal with chemo down the line. So there's that - no spot treatment of any single lesions.
Lastly I asked about adding back the Avastin while I'm on Tarceva. At least anecdotally I've heard about people with slow progression on Tarceva achieving truly stable disease on Tarceva/Avastin. He doesn't want to do that because he seems pretty convinced we'll be back to chemo at some point and he wants to be able to use the Avastin then.
So I have stage IV cancer but it's not kicking my butt too badly. My current treatment may or may not be the very best thing for me. Nobody knows. Clear as mud. But at least I have a plan.
While on my Tarceva break I travelled to New Mexico for an occupational medicine conference. I got in Wednesday evening and stopped by my sister's house for green chile cheese Lotaburgers. Thursday I spent the whole day at the conference and then went to my sister's house for dinner, which was delicious but didn't include any New Mexican fare. We (my sister, her boyfriend, her vet friend who went to UNM undergrad and Colorado State for vet school and I) went to the CSU/UNM volleyball game. CSU is currently ranked #14 in the nation, my brother is an obsessive fan and was worried that they were going to get a challenge from UNM so we went to make him crazy that he couldn't go. We were the only people in CSU regalia besides the CSU team but CSU won so ha! When I got back to the hotel I had fried green chile strips and the best margarita I've ever had in my life for a midnight snack.
Friday I spent the day at the conference and then met friends at Garduno's, where I had carnitas and another margarita. We then stayed up gabbing until the wee hours. One of them has been my friend since age 13!
Saturday I finished the conference and then drove up to Los Alamos to see my BFF (since age 10!). She also has a daughter who is a junior in high school with college athletic aspirations (soccer) so we had fun comparing search notes and college lists.
Sunday morning I drove back down to Albuquerque and had a chile relleno breakfast with my sister before heading to the airport.
My hotel room looked out on the Sandias so every morning I got to see the sun rise over the mountains and the conference ended every day just as they were turning pink. It was just beautiful.
I tried to reach my Albuquerque oncologist friend while I was there to discuss next steps. I wasn't able to reach him. Yesterday I found out why when he called me from the airport in Luxor!
Things I've learned or remembered in the last week:
1) My brother's a nut
2) My heart really is in New Mexico
3) Green chile strips rock!
4) As do premium margaritas!
5) I already know pretty much everything I need to know about occupational medicine to do my job
6) Chile rellenos are good for breakfast
7) Lung cancer sucks
8) Medicine is still more art than science
9) American Airlines can't tell the difference between Hartford and Raleigh-Durham
10) Lung cancer really sucks!
More when we see how I do on the higher (standard) dose of Tarceva.
Wednesday, October 22, 2008
The second thing on my mind is that I'm starting to obsess about what next? and specifically that I really don't want to undergo third line treatment that's going to make me feel awful (when we find out the Tarceva isn't working on Election Day, right?). The doctor tried to convince me not to cross this bridge until we get to it but I was insistent. I told him I'm not even sure I'd go through whole brain radiation if I ever developed brain metastases (specifically, more than 3). He said, "Oh, yes you definitely would." And the chemo nurse was standing next to me laughing and saying, "Definitely."
The bottom line is that I guess I'm scared. My healthcare professionals are wonderful because they let me know when I'm being unreasonable but they also listen for the kernel of what matters at the heart of my craziness. They let me know that I'm off my rocker being worried about whole brain radiation, but they are very understanding about my wish not to undergo treatment that makes me feel awful by the time we get to third line treatment. And they gently remind me that it's likely we won't need to talk about those specifics for quite some time.
That's where things stand. I feel fine and dandy. My liver function tests are normal. Chest, abdomen and pelvis CT scans and a total body bone scan are scheduled for Election Day so I'm pretty sure my update is going to be lost in the uproar, but I'll send it anyway.
Hannah's volleyball season ends tonight. I leave for an educational program in NM the day after the scan. It is being a spectacular autumn in New England and we now have a functional zone control system on our HVAC system at home. Robert's recovering nicely. All is well in my world.
Wednesday, October 8, 2008
On top of the good Tarceva news, I have nascent eyebrows and eyelashes! Really, all my hair is growing back everywhere to the point that I actually shaved yesterday. I had accommodated myself to the hairless look and so was mildly surprised at how giddy seeing the new hair made me. Silliness, but there it is.
Robert is slowly but surely moving forward. He spent his birthday (yesterday, for any of you slackers who missed it) mowing the lawn (!) and getting a haircut. I think mowing the lawn was overdoing it and he's a little under the weather with his headache now but there isn't much else that could make him feel more like he may eventually get himself back. He's cooking, cleaning and applying lotion in all the places I can't reach - so taking very good care of me even though he's not feeling too great yet.
My mother arrives tonight for a no special reason visit. Faith and Bruce get here Friday for the same purpose. I think we girls will plant bulbs this weekend - that will give me lots of color to look forward to in the spring and will help me through the dreary winter. Hopefully good scan results on election day will contribute to the positive wave.
The day after my scan I head to Albuquerque for a few days of CME. Ian, Resa and Macy will be joining us for Thanksgiving. More CME the 4th and 5th of December (Boston area) and then the trek to Albuquerque for Christmas and my mother's birthday. I'm not making travel or event plans for 2009 until we see what the scan shows next month but I'm thinking it's going to be good so I've started thinking about what to do with the kids' April break and summer. I'm sure I'll be driving all over the place with Hannah for volleyball during the club season.
Really, what a difference a week makes. Last week I was sick and demoralized. This week is all sunshine and tulips.
Tuesday, September 30, 2008
The Free to Breathe walk on Sunday, September 21st was great. I walked with my father, Lindsay, Jacob, Jeni, Hannah, Philip, a friend of Philip's and two nurses from my hospital. I spoke briefly to the crowd to fire everyone up before we set off. The weather was beautiful and my team raised well over $6000 - thank you to all of you who donated! There were over 500 participants and over $47,000 raised for lung cancer research.
My Tarceva rash really became uncomfortable on Monday and I called for some topical Clindamycin. I didn't feel very well on Monday - got dizzy feeding the animals and threw up before work. I think I may have been starting off a little dehydration after the walk in the sun. I saw the doctor on Tuesday and he started Minocin for the rash and Augmentin because I had a wee fever on Tuesday morning. By Wednesday night I was having watery stools and by Thursday I was pretty constantly nauseated and not feeling well. I talked to the nurse on Friday and started Lomotil. I went home from work early on Friday and napped during slow days on Saturday and Sunday. Sunday evening I developed an awful metallic taste in my mouth and by the time I got to work yesterday I was truly miserable with nausea and dizziness. I had skipped my Sunday evening and Monday morning doses of Augmentin. I called the nurse. She yelled at me and made me come in for some IV fluids.
Today the taste is almost gone, the nausea is manageable and the diarrhea is better. I think the Augmentin was the major culprit for my misery but this Tarceva is no picnic. Lindsay is coming up tomorrow to help me figure out some sort of makeup regimen that will allow me to look a little less horrifying. I only have Friday to work clinically this week. My mother and sister come next week, so I'm hoping that by mid-October we'll all be feeling a little more like ourselves.
Before anyone yells at me about not calling for help, there's really not anything anyone could have done for us. I've got to adjust to the Tarceva and Robert just has to recover. So it's been a not very good 11 days but I'm hoping for much better to come.
Keep the good thoughts coming.
Friday, September 19, 2008
That was during the day on Tuesday. Tuesday night Hannah's volleyball team fought hard in a losing campaign against East Haven (1-3). Hannah came home in pain and told me that she had hurt her thumb in the third games. To make a very long story shorter, she gave herself a gamekeeper's thumb - pulled a little chip of bone off the lower thumb bone by pulling too hard on the ligament that holds that joint together. She was adamant that she wanted to keep playing (this is her left hand, not her hitting/serving hand) and her dad and I agreed that she wouldn't do herself any significant harm as long as she was able to tolerate the pain. So she went to the trainer to have her thumb taped for the Wednesday night match (also a losing campaign against Shelton, 0-3). Swelling and pain were a little worse after the match, but she played well and satisfied herself that she's not going to lose the rest of her season over this. Which was all good news, but by the time I went to bed Wednesday night my old friend the right shoulder had gone ballistic. I honestly cannot think of anything I did to it to bring on this awful pain again. It happened in August, about four weeks after it was injected and I was worried that I would have to have it injected again before the cruise, but with Ibuprofen and a little phonophoresis and electrical stimulation from my friendly PT it cleared up after about 4 days and had been pain-free until Wednesday. Once again it went from 0 to 10 in a couple of hours and I needed oxycodone for sleep Wednesday night. Thursday I visited the PT for more phono/e stim. And today it's about 50% better. I can't even begin to figure out what's going on with this shoulder but it's given me more pain and grief since February than cancer and chemo have.
As the last great insult, I have come down with Robert's nasty cold. It's just a cold, but cancer complicates everything so I have to be on the lookout for any sign of pneumonia, sinus infection, etc. Meanwhile I'm snotty, achy and have a very sore throat. Again, bleargh.
The Tarceva rash has become progressively worse since Sunday morning - I now have painful pustules across my chin, around my nose and scattered across my scalp. The remainder of my head, face, neck, upper chest and back are covered with blotchy red bumps. So, yay! Right? I will see the oncologist for labs on Tuesday and first scan on Tarceva will be sometime around October 21.
Meanwhile, the Free to Breathe Run/Walk is Sunday in Glastonbury. I am doing an interview on the Mary Jones Show (local AM radio) in 15 minutes and I think an on camera interview on Saturday morning for WTNH Channel 8 to promote the fundraiser. I'm still trying to collect donations to meet my goal. I'm pretty close! Lindsay and Jacob are coming up to walk with me. Robert, Hannah and Philip are also walking with me. My dad and stepmother are coming up to walk with me and some friends from work are walking as well. I can't tell you how much I appreciate all the support.
So I think that covers the last 10 days. Eventful but not so much from a cancer standpoint. Keep rooting for my Tarceva, donate for the race if you haven't already (www.firstgiving.org/lisawoody), and enjoy every day. We're starting to feel just a little fall nip in the air and have turned off the air conditioner. How great is it that I'm about to enjoy another spectacular New England autumn?
Tuesday, September 9, 2008
Robert and I went to see the oncologist this morning to figure out where we go next. The oncologist spent last week going over scans with radiologists and talking to the Sloan Kettering thoracic oncologist while Robert and I were in Alaska. We all agree that the scan after the 8th cycle of Carboplatin/Taxol/Avastin shows stable disease when compared to the one done after the 6th cycle. Choices going forward include continuing the Carbo/Taxol/Avastin (nobody's leaning in this direction - I've already had 2 more cycles than customary, the neuropathy was getting a little worse with each cycle and all the oncologists we've talked to on go on for more than 6 cycles with continued clear evidence of response, meaning tumor shrinkage and not just stable disease), continuing Avastin as a single agent, continuing Avastin and adding Tarceva, stopping everything and waiting until clear evidence of progression to add Tarceva or switching to Tarceva as single agent second line therapy now. My oncologist doesn't want to continue the Avastin to progression because he'd like to be able to use it again in the future if necessary and none of us want to stop everything right now. Probably the biggest change in lung cancer in the last year has been the move to go directly from first line treatment to second line treatment without waiting for evidence of progression. The reason for this is that you lose the opportunity to use second line treatment on about 1/3 of patients because they get too sick while waiting for evidence of progression to tolerate second line treatment. So my oncologist wants to try Tarceva "on a short leash," meaning frequent CT scans and even more frequent liver function tests to make sure everything isn't going to pot. He's worried that I may not respond to the Tarceva because my tumor is negative for the gene mutation that is supposed to be associated with good response. My reading of the literature is that there really isn't that good an association between the mutation and response. I may not see tumor shrinkage, but I'm hoping that the Tarceva will keep things stable where they are. There is one recent study of long term (>4 years) responders to the class of drug that includes Tarceva and most of those long term survivors do not have the genetic mutation.
I've read everything that I can find about Tarceva and plan to do everything that I can to have the best chance of a good result. I stopped Protonix last week and, lo and behold, without chemotherapy to eat up the lining of my gastrointestinal tract, no heartburn! Tarceva is dependent on an acid environment for optimal absorption so proton pump inhibitors like Protonix are contraindicated. I will set an alarm for 5 am every day to take the medication. You are supposed to take it at the same time every day and wait for at least an hour to eat or take other medications. I'll keep it at the bedside so I shouldn't have to really wake up to take it. A rash which looks like but isn't acne involving the face and scalp is common and strongly associated with tumor response. That kind of sucks but I'm accustomed to looking a little weird by now. At least I should get my eyebrows and eyelashes back!. Last but not least I'm armed with Immodium and Lomotil, as fairly bad diarrhea is the other common side effect of Tarceva.
So enough about cancer. On with the trip report!
Robert and I flew nonstop from JFK to Vancouver, BC on Sunday, August 31. We took the Norwegian Cruise Line transfer to our ship, the Norwegian Sun, at Canada Place. This was a first cruise for both of us and we were pretty blown away by the ship. We had lunch in the Seven Seas restaurant
and then went to our stateroom to unpack. We pulled away from Vancouver at about 5:30 pm. The view was spectacular -
the weather was gorgeous on Sunday after a week of pretty constant rain. We had dinner and checked out the on board casino.
Monday morning we had breakfast in the Seven Seas restaurant and agreed to share a table. We were lucky enough to meet Zel and George, Canadians who have done this cruise before and happily responded to Robert's inquiry about playing bridge. We shared much of the remainder of the cruise with them playing bridge, gambling at the casino, riding the train in Skagway and eating in the restaurants. They gave us great pointers about cruising, improved our bridge game as much as is possible in a week with such miserable starting material and convinced us to play Three Card Poker rather than slots and Let It Ride. My two straight flushes and three deuces helped us stretch our gambling stake for the entire week. They didn't do too badly, either!
Tuesday we docked in Ketchikan.
We got out and walked around the town (Sorry, Sam, this is the closest I got to getting a picture of a moose for you).
There is a salmon hatchery in town and we were lucky enough to be there during the salmon run so we got to watch those wacky salmon throwing themselves at the rapids to get upstream.
Wednesday we docked in Juneau and we took a bus to the Mendenhall Glacier.
Wow. I've never seen a glacier before and it was just stunning.
We tried to miss the bus because I made Robert take a little 3/4 mile hike. We were 2 minutes late getting back to the bus but the driver didn't leave without us. Many stink eyes were sent our way by the other passengers, though.
Wednesday afternoon the captain took the ship up Tracy Arm toward Sawyer's Glacier.
There was so much ice in the water that he couldn't get much closer than about three miles from the glacier but, again, it was spectacular. We had a balcony stateroom and I was smart enough to bring my quilt so I could sit out on the balcony to enjoy the scenery.
Thursday we docked in Skagway and took the narrow gauge railroad up almost 3000 feet to the US/Canadian border. We saw remnants of the trail that the gold stampeders took to get to the Yukon and, again, the scenery was spectacular.
Friday was clear sailing. We went to a virtual behind the scenes tour of the ship, which was pretty amazing. Thrusters, stabilizers, rudders, engines - the sheer enormity of running the ship and provisioning for 2200 passengers was amazing! Saturday we went through the Inside Passage again and docked in Vancouver at about 7 am on Sunday. We had an uneventful trip to the airport and through customs and got into JFK at about 11:45 pm Sunday night, exhausted but as happy as we could possibly be with our trip.
I was at work bright and early yesterday morning, Hannah's first volleyball game of the high school season is tonight and our friends Philip and Irene arrive from Oregon on Friday. The Free to Breathe Walk in Glastonbury is Sunday, September 21st. If you haven't had to opportunity to visit my fundraising page for the walk, please do and consider sponsoring me. Just about the only thing any of us can do to give me and everyone else with lung cancer better chances than the dismal ones we have right now is spur research. That's what this walk is for, so we're going for it. Please send the link on to anyone you think might be interested in contributing.
So that's where things stand in the Doc's world today. I feel spectacular - my energy level is pretty much normal, my toes are just a little tingly, I only gained 5 pounds on the cruise and Tarceva is covered by my prescription plan. What else could I possibly hope for?!
Wednesday, August 27, 2008
This is convoluted, so I apologize in advance. First, yesterday's scan shows stable disease to mild improvement. My oncologist is taking all the scans to his favorite radiologist to review. If they decide that there is continued decrease in tumor size the choices would be:
1) Continue the current therapy
2) Stop the Carbo/Taxol and continue with Avastin alone
3) Stop the current therapy and switch to Tarceva
I think he is leaning toward #3. Tarceva is a pill with much fewer side effects than the intravenous chemotherapy and it's what they would have done first for me if my liver hadn't had a heart attack. They would obviously watch very closely and frequently to make sure that the tumor is not progressing on the Tarceva. Because I have not developed resistance to the Carbo/Taxol/Avastin they could always go back to that if the Tarceva doesn't work. Tarceva offers me the chance to grow my hair back and feel stronger without all the bone and joint pain and, because I'm a never-smoker, is actually more likely out of the box to produce a response than the Carbo/Taxol/Avastin was. I actually think this is what he's going to recommend. Which makes me really, really happy.
Probably he will want a PET scan soon after I get back from the cruise to determine how much active tumor is really left. We could be looking at scar tissue everywhere. That wouldn't change anything except that he's still thinking it might make sense to go after the largest liver lesion with cyberknife while it's small enough for the cyberknife guys to be willing to do it.
My shoulder went crazy again over the weekend to the point of ice, oxycodone, PT for phonophoresis/electrical stim, and tears on my part. It is much better than it was Monday, but I will probably see if the orthopod will inject it tomorrow to give me the best chance of not being miserable on the cruise.
I had a little fever yesterday so they drew blood cultures and labs today just to make sure I don't need antibiotics. I have to doctor myself while on the cruise if I get a fever, since no culture facilities will be available.
So I'm making reservations for NM in Christmas because all indications are that I will be around and feisty.
Thursday, August 21, 2008
OK, so it's been a little over two weeks since last I wrote. I had chemo cycle #8 on August 12th. I almost didn't because my white count and absolute neutrophil count were borderline, but my oncologist knew he was in for a BIG fight if he tried to put it off so he just gave up and hung the bags. Hannah spent lunch with me because we thought volleyball was going to be televised on the Olympics, but no such luck. As always, no trouble on infusion day or the next day. I started with my achiness Thursday evening and felt just generally crappy Friday and especially Saturday, but by Sunday was feeling better. Hannah and Philip and I headed over to Long Island to see my aunt and uncle. They waited on me hand and foot and let me just cocoon with a blanket in a recliner - just what I needed.
The thing that's starting to get to me is the constant respiratory tract inflammation that the chemo causes. My nose runs like a faucet, I'm sneezy, I have a sore throat and very unsexy raspy voice and a mild cough that doesn't bring anything up. I just always feel like I have a bad cold. This, combined with the numbness in my feet (now probably >50% of the soles of my feet are numb), is just making me tired of the side effects of the chemo. I'm OK with almost no hair (although the loss of eyelashes means I'm always getting stuff in my eyes) and the fatigue is not too bad, but the everyday overall feeling moderately crappy thing is getting old. Better than dead, mind you, but old nonetheless.
Back to school is swinging into motion here. The parent/player volleyball meeting was Tuesday evening. I am so thankful that Hannah is now driving - all I have to worry about is getting to games! Freshman orientation for Philip is next Tuesday and Thursday is the first day of school. Emma goes back to class on Monday. Her vet school applications are almost done! Ian had his first med school interview on Monday and has another one tomorrow. Classes start after Labor Day for him.
It's absolutely shocking to me that we leave for our Alaska cruise a week from Sunday. One of the nurses I work with confided that she really didn't think I was going to make it until the cruise. That sort of took me back a bit, but then I remembered that that's how it goes for the majority of people with advanced lung cancer and reminded me to be thankful for this chemo regimen and what it's doing for me, crapness aside.
Next scan is scheduled for Tuesday and I meet with my oncologist on Wednesday to discuss next steps. If we are going to continue on these drugs I at least get a week's break since the cruise is scheduled for my usual chemo week. All the more reason to savor that vacation. By the time we get back I will be six months from my diagnosis. I am much more optimistic than I was three months ago and cautiously thinking about scheduling things like Christmas and my mom's birthday in New Mexico and graduations for Emma and Ian. Rather than thinking I won't be around to hear about their professional school acceptances (keep fingers crossed for both of them) I'm already getting impatient to know what they're going to be doing next fall!
So life keeps rolling right along, thank you very much. It's been busy at work, which is good for me even though I grumble. Start of school is always a crazy happy time while the kids settle into a new routine with new classes and teachers. Life is good, crapness aside, and I'm thrilled to be here typing away to all of you.
Next update after I see the oncologist next week.
Tuesday, August 5, 2008
Since my last update the deaths of two cancer victims have touched me. First, on July 25th, Randy Pausch died of pancreatic cancer just under two years from his diagnosis. I had actually viewed his Last Lecture before I was diagnosed and, while it didn't cause any major change in my already sunny and positive disposition, it certainly helped me turn to that as my most powerful weapon in this little war I'm waging. Last Saturday a colleague of mine, also a never-smoking woman physician just a year older than I, died of stage IV non-small cell lung cancer that was diagnosed in April. She had daughters who are 12 and 18.
I certainly don't know why my tumor is responding to chemotherapy when hers didn't. I believe that it's all pretty much luck and biology and I am exceedingly grateful that I wound up on the good side of that coin flip. The upshot of these two sad deaths is that I feel more compelled than ever to live every moment of every day to the fullest and to appreciate every bit of joy and beauty resident in each of those days.
So it's a week until chemo cycle #8. I took Hannah to Washington, DC on Friday. We had dinner with my stepsister Tanis and her children and then crashed on her couch. Saturday we did Hannah's first college visit at George Washington University. Then we checked her in for volleyball camp at GWU. I met some invisible friends for Indian food and then stayed up way too late making up for all the years it's been since Tanis and I got to just chew the fat together. My drive home Sunday was fairly uneventful, although I do so hate the George Washington Bridge. I knew I'd pay some price for all the walking and talking on Saturday and so I'm dealing with a sore throat, stuffy head, runny nose and headache that I always have to greater or lesser degree after each cycle - just a little worse this time than the last couple of cycles because I diverted some of my energy away from fighting that to my DC activities. Totally worth it on all fronts.
My energy level is good, my toes are just the tiniest bit tingly, and I am alive and able to enjoy it. There are lots of fun things coming up in the next few weeks and months. Next up Robert is going to Texas to meet Ian and Isaac and their families. Ian has medical school interviews (I keep telling him he's going to get into medical school but I don't think he really thought it was a possibility until those first interview invitations came in) and Robert is looking forward to showing him as much of Texas as they can squeeze in in a week. Philip and I will be spending a weekend on Long Island with my aunt and uncle. I plan to be waited on hand and foot and Philip is looking forward to learning to play pool from the old shark. Hannah and Philip start school on August 28th. The Alaska cruise is August 31 - September 7. Anyone with recommendations about shore excursions PLEASE email me with them.
My crazy employer gave me a new contract and a raise and they are still being wonderful about flexible scheduling. The patients are still crazy but that comes with the territory. We have a new occ doc and so I am not having to do all of the drug screen medical reviews any more. Incrementally less entertainment (Cocaine?!? Shit! Someone must have laced my joint.) but infinitely less hassle, especially on my days off.
I am starting a secret project very near and dear to my heart, enjoying Robert's wonderful cooking, nearing the end of Henry James' Portrait of a Lady on my commute and raising money for the National Lung Cancer Partnership by walking in their Free to Breathe Walk in Glastonbury on September 21st. The hospital I work for is doing a story on me for the employee paper and hopefully for the newsletter that goes out to the community. The Rachael Ray piece airs on September 5th, the same day that the three major networks launch their Stand Up To Cancer program with a one hour on air fundraising special at 8 pm EDT. Life is good.
Wednesday, July 23, 2008
Cycle #7 went without a hitch yesterday. I am bright red again due to the decadron but otherwise feel just dandy. My red cell numbers were better yesterday than they have been, I assume due to the iron I've been taking. I'm thinking that may be contributing to my higher energy level and my pulse yesterday was 75, down from the ~100 it's been running for the last couple of months.
I'm working today. Tomorrow is end of camp volleyball tournament at Wesleyan for Hannah, a little bit of administrative work time and then Philip to the orthodontist. Lindsay and her friends are coming up tomorrow and I'm off Friday so will be able to spend some time with them. Working Saturday and Sunday, which will be kind of gross, given that those are usually my not feeling very good days, but whatever. My stepdaughter is coming in Saturday afternoon and will be here until Wednesday. I leave Friday to take Hannah to another volleyball camp at George Washington University and I'll get to see my stepsister, Tanis, on that little excursion. Next chemo is 8/12. Next scan 8/26. Alaska 8/31 - 9/7, which will push off chemo #9 (!) by a week if we're still plugging along with it at that point.
Tuesday, July 15, 2008
I know I promised to recap New Mexico and THEN come back with scan results, but we got in at 1:30 am Monday and I've been working and exhausted. It's worth the wait, though. Today's CT scan report shows that the measurable lesion in the liver is down to 3.2 cm (from 5.4 on 3/13, 4.5 cm on 5/13 and 3.8 cm on 6/1) and the lesion in my lung (presumed primary) no longer has any solid component. Everything else is unchanged from prior scans. At this point it would definitely appear that I am ahead of cancer on the scoreboard so we'll keep trying to knock it silly with the current chemo regimen. No new or worse side effects and I've gotten so used to the bald look that I no longer scare myself every time I pass a mirror. That means chemo on 7/22 and 8/12 with another scan on 8/26.
As for New Mexico, I can't ever remember taking a better trip in my entire life. We arrived on Tuesday afternoon and went directly to Faith and Bruce's house. This was the first time I'd seen them since the diagnosis in March, so very big hugs were had all around. Once Emma got off work we went out to dinner at Monroe's, where I indulged in flat blue corn red chile enchiladas with a fried egg, a chile relleno with green chile sauce and a sopaipilla. I also stole some of Emma's flan for dessert. Robert ordered a margarita, not realizing that they only had a beer and wine license and so it was a wine margarita. Suffice it to say that we never heard the end of that insult! My stepbrother Bill, who timed a business trip to be able to spend some time with me, joined us for dinner.
We stayed in a beautiful bed and breakfast down the street from Faith's house where the grounds and architecture were classic NM adobe hacienda and the breakfasts were delicious. Bill and his brother Greer joined us there Wednesday night after a sucky Tuesday night in a Red Roof Inn.
Wednesday we went to see the clinic where Emma is working this summer and met the scary vet who is mentoring her. Well, scary to Emma. Not so much to me. I had my green chile cheese Lotaburger fix with my friend Earl, with whom I share 36 years of friendship, history, and things I'll never tell my mother. We sat and caught up for an hour and a half. Then I visited briefly with the woman who was my office nurse when I was in practice in New Mexico, lo these many years ago. Lindsay and Emma were just babies then so we caught up on everything that has happened in the last 20 years for both of us. Next was a stop at the New Mexico Cancer Center to see my friend Clark Haskins and get my counts checked. Counts were good, Clark was wonderful and gave us the nickel tour. Dinner that night was on Bill and Greer at Antiquity in Old Town. It was absolutely delicious, but more important than that, gave Faith and I time and opportunity to reconnect with them - life and grown up responsibilities have pushed our childhood memories and closeness into the background.
Thursday the golfers played golf and I had lunch with my friend Gayle who drove down from Farmington. She and Cindy colluded to make me the most beautiful quilt - evocative of the Southwest and perfect for the chemo chair. We shared gossip about old friends and colleagues, talked about work, and shared hugs and a few tears. Lunch was at Sadie's where I once again fed my flat blue corn red chile enchilada jones and had sopaipillas for dessert.
Later in the afternoon Mom drove in from AZ and Chris and Sheri drove down from CO. They were staying at a bed and breakfast that had a huge courtyard and patio so they went to El Modelo to pick up dinner to eat on the patio. They brought the best tamales on Earth, enchiladas, sopaipillas as big as dinner plates, but best of all a completely new thing to me - chile relleno burritos. MMMMMMMMMMMMM!
Friday Emma took the day off and we took it easy. She and Sheri and I hit Lotaburger for lunch. Dinner was at Maria's New Mexican kitchen in Santa Fe. They were reported to have the best enchiladas and margaritas in the state and I have to concur. I have never tasted red chile to compare and the margaritas were great. They also had the best flan I've tasted since the last time my mother made. My friend Claudia (the only friend I've had for longer than Earl) drove down from Los Alamos to meet us and had a ball catching up with my mother and Chris. We trekked up to see Falstaff at the Santa Fe Opera. It was really cold, but lots of fun. Robert and I followed Claudia up to her place in Los Alamos and everyone else headed back to Albuquerque.
Saturday Earl and his wife, Pamela, drove up. Pamela has the distinction of accompanying me on a wild and wacky road trip from TX to NY in 1982. We were in my '72 VW bug that had no starter and had my little dog, Sleazy, along for the ride. Enough said. We spent the day on the deck, gazing at the mountains and talking about kids, parents, love, cancer and these amazing longterm friendships that can pick up in a heartbeat without a moment of hesitation or ill ease.
Sunday Claudia drove me back down to Albuquerque for brunch at Garduno's, after which we left for the airport and home. I'm always sorry to leave New Mexico (definitely my heart's home) but it was orders of magnitude worse this time. I couldn't have asked for a more delightful few days of family, friends, gorgeous scenery and skies and FOOD.
So, really, the news all around couldn't be any better. Staying the course is the plan of the moment. Next on the travel agenda is Alaska after the kids start school again.
Thank you for all the good thoughts, prayers, and crossed fingers, toes, arms, legs and eyes. Keep up the good work!
Tuesday, July 1, 2008
Then we talked about what happens when we stop the Carbo/Taxol. Sloan-Kettering suggested continuing the Avastin and adding Tarceva. Unfortunately, that's not being done off protocol and I'm pretty sure my insurance will refuse to pay for both and both are disgustingly expensive. If I stay on the chemo until tumor progression it's not an issue because we'd stop the Avastin anyway, but if I stop because I've reached tolerance I'll have to ramp up the appeals process.
A man down the row of chairs from me got hauled out on a stretcher because of an allergic reaction today. Apparently, it caused quite a stir among the other patients but I was so dopey I really barely noticed the stretcher rolling out.
Friends are coming into town tomorrow and taking us out to my favorite restaurant. I work tomorrow but then I'm off for four days. Work Monday and then leave for NM on Tuesday. Clark Haskins is doing my count on Wednesday - I am so excited to see him! It's been over ten years. Next scan is July 15th and, if the tumor is still shrinking, cycle #7 on July 22nd.
This last cycle was completely uneventful and I feel great. My oncologist is loading me up with just in case antibiotics to take to NM with me. I'll see my sister, Bruce, my mother, brother, sister-in-law, best childhood friend and Emma while in NM, not to mention eating green chiles with every single meal. We're all going to the Santa Fe Opera together on Friday evening after dinner in Santa Fe and then Robert and I will spend Friday night and Saturday with my childhood friend in Los Alamos. NM is my heart's home and I haven't been there for 7 years so there is much happy anticipation.
If all goes well, you probably won't hear from me until it's time to recap the NM trip, followed closely by scan results. Keep all appendages crossed.
Friday, June 20, 2008
Friday, June 13, 2008
Chemo cycle #5 went without a hitch on Tuesday. We're trying a new symptom control regimen that includes steroids for three days after chemo, Ibuprofen during the day and oxycodone at night. So far, it seems to be a winner. I'm a little achy today, but nothing that will interfere with life in any significant way. The Neulasta last cycle kept my white count normal and didn't increase side effects significantly so we'll do that with every cycle from here on out. Honestly, there's not a whole lot of cancer news - next scan is after cycle #6 which comes on July 1st.
Last week was a whole lot of fun and games. Emma came to town for the great 21st birthday extravaganza. Lindsay came up to share in the festivities. My brother and sister-in-law showed up on Wednesday and did he ever have a surprise for me!:
We had a great visit and look forward to seeing them again in New Mexico next month.
Another school year is winding down and that means end of year concerts and recitals for Hannah and Philip. Finals are next week and then Philip heads out to music camp for a week. Hannah says she will be job hunting this week.
My mother and stepfather will he here next week for my great 50th (!) birthday extravaganza, but otherwise I'm planning to keep things low key this cycle and see if I can avoid the entire chest pain/fever drama that was no fun last cycle. I have no idea how many cycles of this Carbo/Taxol/Avastin I will eventually wind up completing, but I figure I'm at least halfway and it hasn't killed me yet!
Delightful weekend wishes to you all.
Monday, June 9, 2008
FUN WITH CANCER just keeps rolling right along. I had another dreadful
O'Hare experience Friday evening that involved gate changes, delays,
lies, lies and more lies about a fictional Cinnabon that resulted in
miles of walking. Bastards! By the time I was half way through that
process I had a moderately severe sore throat but made it home and into
my bed unscathed. I worked Saturday and that was OK. Then the hammer
fell. I woke up Sunday with right sided chest pain whenever I took a
deep breath and a dry cough. I took my beloved Ibuprofen on my way to
work - which made my shoulder feel better but didn't do much for the
chest pain. No fever but my pulse was 120. So I promised myself that if
it didn't get better by noon I'd go to the ER. Which I did. By the time
I got to the ER my pulse was down to 95 and I was cursing myself for not
waiting a little longer. They did counts (fine), a chest x-ray looking
for pneumonia (fine) and a CT angiogram looking for a PE (fine). Because
I didn't have and hadn't had any fever they didn't draw blood cultures
and let me go home - by which time my pulse was 82 and I had almost no
So then, brilliant a person as I am, I went home and launched into the
A/C zone control system that has been making our first floor a meat
freezer and our second floor a sauna. That was an hour and a half of
screw drivers, flashlights, breakers, up and down 2 flights of stairs to
push thermostat buttons, etc. Then dinner. Then Philip's birthday cake,
the decorating of which was an unmitigated disaster with purple
buttercream frosting slowly slipping down the side of the cake. This I
finished at about 9:45 and was miserable - exhausted, chest pain and
short of breath. I cleaned up, went upstairs, changed into PJs and
checked my temperature. Voila! 101.1. So I had to call the on call
doctor. We hashed around alternatives and decided to start the
antibiotic my oncologist has me keep on hand for just such circumstances
and now I'm at work, no fever, feeling better than last night but now I
have a headache, and waiting for the oncologist to call.
Tomorrow I'm supposed to drive to Philadelphia with Emma to look at the
UPenn Vet School, something which I am looking forward to with much
happy anticipation and feel like I'm probably going to have to fight
with the oncologist about.
Silver lining - CT angiogram was on the same machine and read by same
radiologist as my follow up scan on 5/13.
5/13 - largest liver lesion 4.5 X 4.0 cm
6/1 - largest liver lesion 3.8 X 2.7 cm
Wednesday, June 4, 2008
Basically, the MSK guy said that for people responding to the Carbo/Taxol/Avastin (meaning tumor shrinkage, not just stable disease) his policy is to treat to tolerance. AOF concurs with this. But here's the reason I love AOF so very much. I asked him what the most number of treatments of Carbo/Taxol/Avastin he's ever administered and he said 10. Which made me whimper. And then he said, "But I never tell my patients I'm treating to tolerance. I tell them let's do 2 more and see where things stand." He said I have to live in the 2 cycle place in my head and then he asked me what problems I'm having with the chemotherapy. I said that it's those 3 or 4 days of pain after the chemotherapy that just really do me in. He responded that it should be better treated because the tolerance reasons to stop the chemotherapy are neuropathy, fatigue (as in can't get out of bed for more than a couple of hours a day) and weight loss. Everything else that I don't like should be treated as a nuisance side effect. He told me to take narcotics every night while the pain is bad and pump up my bowel regimen. He said what everyone else says about the neuropathy - that I'm not likely to get any of that back so not to let it go too far. I've started with a little numbness in my toes over the last couple of days and intermittent fingertip tingling. I don't want to let it get to the point of interfering with examining patients, writing, typing or playing the piano. As for the feet, I need not to let it get to the point of stumbling. The fatigue and weight loss are not issues for me so the neuropathy is likely to be the thing that determines just how many cycles I get as long as I keep responding.
Once we're done with this chemotherapy the MSK guy says that their policy is to start the Tarceva right away, not wait for disease progression and my oncologist agrees with that. That was new to AOF but he sees why they do it and would go ahead with it.
And then we got to the crying. Because, while the Tarceva doesn't sledgehammer the entire person like the Carbo/Taxol does, it has its own little issues (rash and diarrhea) and I would still be on the Avastin (bloody noses, bleeding hemorrhoids and a chronically nonhealing port wound). So, basically, I don't get my old self back. Ever. While treatments are working I have a chronic disease and get to live with the side effects of the medications. Once treatments stop working I get the effects of the illness and, pretty quickly, I lose the whole shooting match.
AOF told me to stop being a doctor and start being a patient. He said to try to live my life in 6-8 week increments (6 while I'm the C/T/A and getting scans after every other cycle and 8 once I'm on Tarceva and getting scans every two months). He reminded me to optimize the right now because it's all any of us really has. And he tipped his hat to me for keeping at the fight.
So today the pain is almost completely gone. Tomorrow I get to go see friends in Illinois. Saturday Emma comes home for a week. The sun is shining and life is good.
Oh, and I have been receiving reduced doses of Taxol because of my liver wonkiness and today I got the full dose! Take that, adenocarcinoma!
Yay! Response! Plan!
I think we will wind up proceeding with the chemo next week because the improvement in the liver function tests is supportive evidence for decrease in the size of the liver lesion. Then I'll take my whole pile of scans, lab reports and chemo summary to Sloan Kettering a week later on the 27th to find out what courses of action are available at this point. At the very least, the chemo has given us some breathing room to evaluate treatment options by knocking the liver function tests down to the point where I am once again eligible for clinical trials.
So I'm a little deflated because it certainly doesn't look like a great big old complete response is in the cards for me. But I still feel pretty normal except without hair and can pursue all the life activities that ever interested me so maintaining that for as long as possible seems to be the goal to shoot for at this point.
There's lots of that life stuff on the near horizon for me, too. Friends will be visiting from Oregon this weekend. Next Friday I travel to Podunk, PA to see Lindsay's last show and BRING HER HOME. She and Jacob will spend Memorial Day weekend in CT with us. May 29th I travel to Chicago for a meeting and hooking up with my Chicago homies. May 31st Emma gets here for a week and my brother and sister-in-law pop in to help celebrate her 21st birthday. Mid June sees my mom and stepfather in town for a visit. NM beckons the second week of July. Man, I'm exhausted just typing it! But much fun will be had all along the way.
Thanks, as always, for all the love, support, thoughts and prayers. I'm putting them all to very good use.
For you Loyola folks, I will be in Chicago Friday, May 30th for the annual meeting of the National Lung Cancer Partnership. The meeting ends downtown at 12:30 and I have a 7:30 pm flight out of O'Hare so I'm planning just to head out to Loyola for lunch and visiting.
Dr. Frye, I know that Dr. Albain is VP of the Board of the NLCP. I have given the NLCP and my current hospital permission to use my Rachel Ray appearance for any PR stuff, lung cancer awareness, etc. that they'd like. If Loyola wants to do anything along those lines about a former member of the family, I would be fine with that. I don't have an air date for the show yet but hopefully will by the end of next week.
Everyone have a delightful weekend, because I sure am going to!
The rollercoaster that is my life keeps right on rolling. Thursday we left for Texas. I had my stupid AC joint injected on 4/9 because it hurt like a mofo and orthopod said he'd give me as many steroid injections as I want because the cartilage is toast already. I had about a 75% improvement until I carried my suitcase on the right side Thursday morning and OMG! I thought I was going to die right through Sunday afternoon. Friday and Saturday I was taking maximum doses of Ibuprofen, which I'm not supposed to do because it can make my GI tract bleed (which is a very bad thing due to the Avastin part of my chemotherapy) and because it could mask a fever. I cut down to 600 mg three times a day on Sunday, took my last dose at 10 pm Monday night and woke up at 3 am Tuesday with a fever. It broke by early morning and I woke up fine with very little pain in the shoulder and no fever. I didn't take any Ibuprofen. When I got home after taking the kids to school I felt exhausted with a mild headache. I slept until I got up and ate on my way to chemo.
When I got to the oncologist's office (where the Rachel Ray film crew was waiting, BTW), my temperature was 100.3. I went round and round with the oncologist. He wanted to hold off a day or two on the chemo and wait for blood culture results. I argued that my white count was great and I wasn't really immunocompromised right at that minute (Tuesday) so if they started empiric antibiotics that day I should be able to fight off anything that's percolating before the neutropenia hits next week. He reminded me that I would be getting a big dose of steroids with the chemo which will screw up my immune system. In the end he agreed to go ahead with the chemo on Tuesday, start the antibiotics and see me today and maybe give me some Neupogen early. I felt much better by about halfway through chemo and my temp was normal by the time I was done - but that may have been the Decadron.
My fever has stayed gone since Tuesday afternoon and I woke up Wednesday with a rip roaring cold, so I think a respiratory virus accounts for the fever and I'm glad we went ahead with the chemo on Tuesday. Today is day #1 of my usual three days of yuck after chemo. Everything hurts, including sharp, shooting head pains. I'm queasy and still snotty from my cold. But, hey! I'm alive.
For those following the liver function test saga - AST is 43, ALT is 71, Alk Phos is mid 200's. Still getting better but I'm getting annoyed that they're not just normal already.
Follow up scan is scheduled for Tuesday, 5/13. Sloan Kettering visit is 5/27 (after chemo #4 on 5/20/08). More important than that, The Rachel Ray Show is sending a car to pick me up next Tuesday and take me into NYC for the in studio taping. I should have an air date a few days after the taping and I PROMISE I'LL TELL EVERYONE AS SOON AS I KNOW!
Today I'll try to distract myself from the yucks with the following: doctor's visit, lots of laundry, passport picture and mail in renewal application, pick up all scans and slides for various doctor's things upcoming. I work the weekend so I have today off. It's beautiful in Connecticut but NOT WARM so please send warm thoughts our way and, as always, keep your cancer killing thoughts and prayers coming.
First, I'm feeling great. It certainly helps that I didn't screw up and take steroids instead of acid reducers like I did at this point in the last chemo cycle. So right at this moment, except for the fact that I have no hair to speak of, I feel exactly like I did two weeks before this monster was diagnosed - no pain, no nausea, great energy level and all smiles.
Yesterday my Medaris cousins drove up to have lunch and shoot the breeze with me. I'm not sure it's really safe to have that much kick ass and takes names later mojo in one room for very long, but it was a delight to see them and catch up on kids and parents and life in general.
But the real purpose of this email is to ask a small favor of all of you and your friends.
The National Lung Cancer Partnership has put an online petition up to encourage increased federal funding for lung cancer research. I ask you to take a look, and, if you will, to sign it.
A social stigma is attached to lung cancer that seriously impedes funding and advocacy, although many patients -- like me -- are lifelong nonsmokers, and even those patients who have smoked do not "deserve" to be punished with this terrible disease. Today, lung cancer research is only funded at the federal level by the National Cancer Institute (NCI). This is in contrast to many other common cancers which receive funding from several different federal funding agencies. Lung cancer receives considerably less research funding (about $280MM) from NCI than either breast ($570MM) or prostate ($310MM) cancer. If you translate that into research dollars per death from cancer, NCI estimates that in 2005 it spent $1,708 per life lost to lung cancer; $13,947 per death to breast cancer; and $10,214 per prostate cancer death.
The petition can be found at:
The first ever United for Lung Health Federal Advocacy Day will be held on May 13-14 in Washington, D.C. and I'm sure a bump in petition signatures will be something good for the advocates to have in their pockets. I won't be able to make it this year, but hope to be there with bells on my toes and fire in my belly next year.
Well, I suppose I've procrastinated long enough. Time to scale the mountain of laundry that's glaring at me.
Today was the background taping for the Rachel Ray Show. I had my blood drawn first thing this morning and then Hannah and I drove into NY, where we spent about 4 hours being bored to death. The producer interviewed me, then I talked to the designer . Then everyone else packed up and headed to the workshop and Hannah, Lindsay's husband and I headed back to CT.
All the cancer news is still good. My white count is low normal today so no Neupogen. AST, ALT and alk phos are all better than a week ago (AST is almost normal!). OK, for you number followers - WBC 3.4, K 5.4, AST 41, ALT 87, Alk phos 294, BUN 32. One of my kidney tests is a little high, as is my potassium, so I'm supposed to be pushing fluids. I feel fine and hopefully will stay that way until the next round of chemo on the 29th.
Keep the good thoughts and prayers coming. They seem to be doing the trick.
Mostly I hope for good luck to go with my good underlying health, good socioeconomic status and world class medical advice. I hope this is a really responsive tumor and my anguished decisions are all about keeping it gone. I really wish I had a crystal ball because all of this uncertainty sucks.
I'm likely not to sleep too much tonight thanks to the Decadron so I'll spend my awake time on cancer destruction imaging. I really appreciate more than I can ever say the cards and emails you are all sending. It keeps my chin up and the smiles coming. And, as always, thank you for every prayer and good thought you can spare.
Joyous weekends all around on me!
So I did all that and...
Counts are normal.
Liver function tests are even better than they were last Tuesday!!!!!!!
AST 55 (3/5 46, 3/17 133, 3/25 101)
ALT 140 (3/5 58, 3/17 273, 3/25 282)
alk phos is higher but it's very nonspecific.
bili still normal
LDH normal (never checked before and I was way worried about it)
When I talked to my oncologist friend in NM about this protocol just after my oncologist recommended it he was really up on it. He said that he's had a number of patients achieve complete and sustained remissions. So I asked him how long it takes to know if someone is going to respond that way and he said that those who go into remission do it fast - they can tell with the first or second cycle.
My oncologist is a little more conservative in talking to me about what to expect - he won't refer to remission with this tumor, only disease control, and he won't check for tumor response until after the 4th cycle. My oncology nurse friend in Portland also has someone close to my age, build and performance status who shows no evidence of disease with the same cancer 9 months after treatment with this regimen.
So there's a big part of me doing a great big Snoopy dance right now, coming out from under the pall that this diagnosis threw over me. During my residency this diagnosis was a death sentence and it's just going to take me a while to adjust to thinking of this as a chronic disease that I can manage (with a little help from the oncologist).
Keep the good thoughts, prayers, etc. coming!
So my hair started coming out in handfuls yesterday and I decided I didn't want another shampooing experience like this morning's so I visited my friendly stylist today and we took step one. I call this Jamie Lee Curtis on the way to Demi Moore:
I'm still having aches and pains and low grade temperature elevations - all pretty well controlled with Ibuprofen (and Cipro after the Decadron debacle). Still doing OK with work and running kids around.
Through weird and wonderful and crazy turns of events it looks like I'm going to be on The Rachel Ray Show for something tangentially related to the cancer. I'm hoping to get 5 seconds to speak my piece about lung cancer and point viewers to The National Lung Cancer Partnership for information and donations for original research. More about that as it becomes available.
I'm in good spirits - visualizing cancer cells floating on splintered pieces of wood crying for help as the sharks circle. Keep all the good thoughts and prayers coming.
Dear Family, Friends, and not elsewhere classified (NEC) Loved Ones,
My Dad and Katie sent me a book called Crazy, Sexy Cancer Tips and one of the tips was an email list to keep loved ones up on what's going on without having to call or write a hundred people every time. So this is the inaugural message to my mail list! Anyone who would like to be removed from the list, please let me know. Thanks for the book, Dad and Katie!
So since this is the first, I'm going to put the whole diagnosis story in and let everyone know where things stand right now. On February 29th I went to see my internist because I had had six whole days of mid/upper back pain which just didn't seem like the mechanical back pain I see and treat all day every day. She agreed, checked a urinalysis and ordered a CT because she thought it might be an atypical kidney stone or gallbladder disease. The CT was on Tuesday, March 4th, and I will always feel sorry for her having to make that phone call. You can sugar coat things like "T10 lesion, right adrenal lesion and three lesions in the liver" to a lot of patients, but she knew I would know what was up. She had already scheduled MRIs of the Tspine and abdomen/pelvis and spoken with an oncologist when she called me Tuesday afternoon. I had the Tspine MRI on Wednesday and had blood drawn for chemistries. I had had a completely normal annual physical with chemistries in November. Now my AST was 46 and my ALT was 58 (both slightly elevated - less than twice normal). Everything else was OK. The Tspine MRI showed a cystic lesion in my right upper lung so they added a chest CT to the abdomen/pelvis MRI on Thursday. I saw the oncologist Thursday afternoon. We sent discs of all the scans to the interventional radiology department at St. Raphael's Hospital and on Friday I had a CT directed biopsy of the Tspine lesion. Monday the knew it was an adenocarcinoma. Tuesday the TTF1 stain was positive so presumptive lung.
My oncologist recommended Carboplatin/Taxol/Avastin chemotherapy and wanted me to get a port put in and start the next week. I was put into contact with a thoracic oncologist at Sloan Kettering who suggested that Tarceva (a targeted therapy that is an epithelial growth factor receptor inhibitor, oral and less toxic than the chemo my oncologist had recommended) was probably the best option for me. I made an appointment to trot down to Sloan Kettering on Friday, March 21st. My oncologist was worried about my liver function (if too high it would disqualify me for any clinical trials, Tarceva and even the Taxol component of the chemo he had recommended) so I agreed to proceed with the port on Monday, March 17 and a recheck of my liver function tests. Unfortunately, they had shot up in 12 days (for those of you reducing this to an Excel spreadsheet (yes, I'm looking at you, Chris!) the total bilirubin was 1.5 (up from .5), AST was 133, ALT was 273 and alk phos was 280). He spoke with the guy at Sloan Kettering as well as my old friend Clark Haskins in Albuquerque and all agreed it was time to proceed with the chemo.
Emma came to Connecticut for spring break and was my chemo buddy that first day. Three hours for the Taxol, 30 minutes for the Carboplatin and 90 minutes for the Avastin and that was AFTER premedication with Zantac, Decadron, Benadryl and Aloxi. I felt fine that day and Wednesday. Wednesday afternoon I got Neulasta to boost my white cell production and felt like I'd been run over by a truck on Thursday and Friday. Oncologist restarted Decadron for a couple of days and by Saturday I was functional again. No nausea to speak of. Awful, terrible heartburn (I guess I'm finally making stomach acid with this little stressor in my life) so I started Protonix on Wednesday, then pulled a chemo brain boner and took Decadron instead of Protonix (the bottles look the same, I promise!) on Thursday and Friday so I was awake all last night and miserable. Starting to settle down now that the Decadron is in a different drawer.
Chemo will be every 3rd Tuesday for four courses and then we'll recheck a scan to look for disease response. I do plan to head down to Sloan Kettering at whatever point there is a new treatment decision to be made (more chemo? Tarceva? Study drug?).
I saw the oncologist for a followup on Tuesday and I am cautiously optimistic because the total bilirubin was down to .34, AST down to 102 and ALT and alk phos were essentially stable at 282 and 381. So a little bit better 7 days after chemo after that awful 12 day run up was a big relief.
The odds for this cancer are pretty dismal (<15%>65% chance of responding to Tarceva even if disease progresses on or after the three drug chemotherapy. It's really all about trying to manage a chronic disease, as best I can tell. I keep reminding Robert that, while I don't have the common sense of the average woodchuck, I tend to score in the 99th percentile on standardized tests so that's what I'm aiming for - to be a rare case of prolonged remission.
The other thing that has become clear to me over the last few weeks is that, while I harbor these stupid cancer cells, you all have this cancer with me. Those of you who elect to stick with me through this are voluntarily opting for fear, frustration and potential pain. I'm just playing the hand that was dealt me. So thank you and take care of yourselves.
The next time there will be any information about how things are actually going will be at the end of May, after the 4th chemo. I'm still at work and they are being wonderful, supportive and flexible. The Medaris cousins are coming up for lunch in mid-April. Robert and I are heading to Dallas the last weekend in April for my 25th year medical school class reunion dinner. We will also get to see my dear friends from the chemistry and biology departments at SMU, Lindsay (who will be in North Texas with the show she is currently touring), Lynn, the Pierces and Robert's aunt. End of May, early June will bring Chris, Sheri and Emma to Connecticut (Emma is finally turning 21 - why does it seem like it has taken 37 years? and Philip is turning 14). I plan to head for NM in mid-July to catch up with Emma, who will be shadowing Faith's vet for the summer, Faith and Bruce, Claudia and anyone else who finds themselves in the Land of Enchantment around that time. I will also catch some beloved opera in Santa Fe. Depending how things are going late August/early September, Robert and I will try to take an Alaskan cruise - the one thing I have really, truly dreamed of and don't want to leave this life without doing.
I think that's it for now. I promise I will call on you when I need something and keep you up with the news. We'll do our best to answer phone calls as they come. I love you all more than I can say.