Friday, March 27, 2009

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


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

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

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

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

Thursday, March 19, 2009

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

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

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

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

Wednesday, March 11, 2009

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

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

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

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

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

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

Saturday, March 7, 2009

Hair for Posterity

OK, here's how I look today:

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

Friday, March 6, 2009

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

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

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

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

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

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


Tuesday, March 3, 2009

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

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

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

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