Friday, April 9, 2010

Double the Chances

As we arrived at Smilow on Wednesday I couldn't help but feel like I was back in college again anxiously awaiting to see the bulletin board where the exam results would be posted and scanning along the list looking for my student ID number and subsequent grade.

I'm wildly competitive – especially with myself – so I wanted to knock all of my body function test scores out of the park. The previous day I had a total of six different tests including a MUGA scan and EKG of my heart, three different pulmonary tests to check my lungs and most important of all, a PET scan to get a 3-D image of my whole body to search for any hot spots that might indicate cancer activity.

I especially liked the pulmonary tests because I got to be an active participant vs. just lying there hooked up to machines. And, the results were instant. The tech who administered my tests was fantastic about explaining everything I had to do and pumping me up while I was blowing with all my might into the machine. I did very well with my lung capacity and strength. He even gave me a fist pump and said "Okay, you impressed the tech," when I registered at 103% of expected results. A normal, mostly sedentary person is usually in the 80s he told me. However, the test that measured how much oxygen is dispersed into my bloodstream didn't register such stellar results. He explained that this is likely caused by the Bleomycin, one of the drugs in my ABVD regimen, which can reduce my lung capabilities long-term. I still passed well enough to be cleared for this upcoming chemo. It's just something we'll need to watch in the future.

The meeting with my Yale oncologist revealed that I had a great outcome on all the tests and would have no problem with the chemo. In fact, he wants to give me even more chemo. In a little exam room with Dr. Cooper, his nurse, Erin, and my stem cell transplant coordinator, Kathryn, it was explained that they thought the best move for me to be cured from this forever is to do a double stem cell transplant. As if a single wasn't confusing and intimidating enough! However, after long, careful discussion I understand that this additional regimen will give me an even better shot at never, ever having Hodgkin's rear its head again. The worry about the long-term effects of being exposed to so much toxic chemo or having it leave me predisposed for other cancers is much outweighed by the fact that I have a very aggressive disease right now that could kill me. There's no sense in worrying about statistics for things that may or may not come up in the future. Right now, this is here and it's real.

My PET Scan was clear of any apparent signs of cancer meaning that the salvage ICE chemotherapy did its job. This was the first time that I was able to see what the PET Scan images look like as Erin pulled it up for me on the computer and I could see my body from different angles and where certain organs were lighting up because they were working on dissolving the radioactive isotopes within me. Fascinating.

There is one area near my sternum that is lighting up as a hot spot. We've talked about this area before on previous scans. However, Dr. Cooper and the team at Yale think it's unlikely that it is cancer as it would be odd for one spot to remain while every other area of activity (my abdomen, spleen, mediastinum) had dissipated. He thinks that it may be my thymus gland lighting up or possibly a blood clot. We're going to watch it. So, I suppose we can tentatively say that I'm in remission?

Though there is no cancer showing up on the PET Scan, there also is no one test that can definitively say that I am cancer-free. This is why we are going to add a chemo regimen called DICEP followed by an extra mini-stem cell transplant to help me recover. If there are any rogue cancer cells remaining that might have been resistant to the ABVD, ICE, and the upcoming BEAM chemo, the high-toxicity chemo drugs of DICEP will be another shot at wiping them out. They want to put me through this because I have "concerning disease." When I asked what "concerning" meant, I was told that because my disease was so extensive when I first presented with Hodgkin's at stage 4b and because of how quickly I relapsed that I have an aggressive form of the disease. Because I am young, strong and active, and because I tolerated the previous chemo regimens so well, the docs and nurses are confident that this is the best course of treatment.

The DICEP regimen (dose-intensive cyclophosphamide, etoposide, and cisplatin) will require a four-day hospital stay during which I'll receive the chemo as an inpatient at Smilow Cancer Hospital. This starts next Wednesday, and I hope to be out Sunday at the latest. Then on Monday I will receive back some of my stem cells that they've thawed out for me in order to help me to recover from the chemo.

I'll have around three weeks to get my bearings back during which time I'm told I'll feel real crappy, basically like a prolonged hangover "without the fun of the night before." I'll be very bloated from all the fluids they'll have to give me, will be extremely tired and not hungry.

Just as I am starting to feel better, we'll begin the more in-depth treatment that we've been planning for since February. This will be the 10 infusions of BEAM chemo over 6 days followed by the transplant of millions of my stem cells on the 7th day. For the next two weeks, I'll stay in the medical hotel while the high-dose chemo side effects kick in and while my body deals with the reinfusion of my cells and the rebuilding of my molecular systems.

Out of the 100 or so stem cell patients each year at Yale, Dr. Cooper and his team perform this double transplant on about a dozen patients. I guess I should feel ... special?

In all seriousness, I do completely agree that this is the way to go. I'd rather concentrate the suffering into a shorter time period than have to deal with the unthinkable news of a relapse in the future. Let's kick this once and for all. Bring it on - again, and again. Then let that be it. Forever.


  1. I'm with you on this one!! Let's kick it's butt for good!

  2. Sounds as though you have a fantastic medical team,and are making all the right decisions,so now go for it. There may be some bumpy places coming up , but you can do this. With your wonderful family to lean on when you need them, and all of us out here pulling for you, you will surely overcome this once and for all. God bless you, Irene

  3. Karin, I had to read this post several times before it all made sense. So much to take in. I agree. Let it be it. Forever. You are always in my thoughts, Lynn