Saturday, August 13, 2011

Post Treatment Reflections and thoughts on Meagan's letter

There is a big difference between getting about 5 1/2 hours sleep and almost 8 1/2 hours sleep. I feel quite a bit better today; yesterday, I was not so good. The day before a scan or treatment I am usually too hyped up to sleep much. So by 8pm last night I was yawning a lot. Meagan was tired too - even though she napped throughout most of the procedure yesterday and most of the afternoon. I'm glad it went well, obviously, now we just wait and see how long it takes before the radiation does its thing. The thing about radiation and melanoma is that there is about a 70% success rate of what they call "local control". That means in 30% of the cases the melanoma ducks the radiation and continues to grow. You always have the option at that point of hitting it again. But t's a tough beast and tends to be radiation resistant.

When it comes to medical issues it seems there are several philosophical camps. There are the cheerleader and optimists. There are the pragmatists. Then there are the alarmists - everything that can happen badly, will. I fall into the middle rank - I try to read a lot about the disease and its progression (recognizing Meagan is not a statistic but a person) and understand treatments and prognoses. I appreciate the cheerleaders and optimists - so I'm glad we have a team and that role gets filled by others. I also have a separate role as a loving supporter no matter what - but that is a different matter.

Regrettably, from my perspective, even if you treat Meagan as a person, and not a statistic with respect to this disease, she has drawn the short straw every time. The disease has progressed rapidly, and all treatments have failed. It got to the brain fast, and did significant damage, and has reappeared in new locations in the brain. She doesn't have the mutations which science seems to be having good success pursuing, and the new drugs haven't worked for her. While Meagan might characterize her brain tumors as tiny, and has a lot of confidence in her radiologist's ability to zap them, it is not a good sign that they are blooming in her brain. While it turned out there were actually only two they zapped yesterday (the high resolution MRI found the the other spots were benign lesions), they were in very different locations and different than the original two. That tells me it's pervasive in the brain and we can expect more. And melanoma has a tendency to emerge quite rapidly. She is scheduled for a follow-up scan on Sept. 14 - so we will see not only if there was any effect on the ones zapped yesterday, but any new signs.

More troubling for me is that in the new CT scans they did discover a new soft tissue tumor near the base of her spine. So we do know what has started giving her some pain in that area. Apparently that can be treated by radiation as well; the Cyberknife radiation treatment has evolved to point where they can handle that sort of tumor. What worries me is that there are two areas of tumor development connected by a common highway, the spine. It is not at all uncommon for melanoma to attack the spinal column. The bone scan on Monday may help clarify the situation better.

What will also help is to be able to see the both scans and talk with Kaplan directly. Frankly she has forgotten what he told her exactly on Thursday night when he called. Her recall ability has definitely deteriorated. So I am going to be ready to take good notes and ask questions, even if they are difficult ones. We also don't know where else tumors might be developing and what is the status of her lung tumors. We know the status of her skin surface tumors as she can see and feel those. So Tuesday will be a huge day.

Many melanoma patients can extend their lives for some time by surgical and radiation treatment even if the underlying disease is not halted. Her disease is clearly not halted and she also has it presenting in the central nervous system. My biggest concern is that at some point it reaches some part where it becomes untreatable, even by radiation. Radiation works great when it does if there is a solid discrete tumor - it really can't work too well when the cancer is diffuse within the affected area - because radiation works by killing all the cells in an area, but the good ones come back whereas the cancer does not. There are some places you don't want the good ones to die off because they can't regenerate fast enough to keep you alive. There is a difference between curable, uncurable but treatable (meaning you can manage it for a while) and untreatable. As long as we are in the uncurable but treatable camp I'm ok - it means a lot of visits to scan places and zappage places. It means we are buying time, at an acceptable quality of life.

I am worried by this latest development. But I am going to try not to show my worry over the weekend and let Meagan recover and just be as happy as she can be over the next couple days. Because there is nothing we can do until Tuesday anyway, and we might as well be in the moment.

1 comment:

  1. Nick,

    Thank you for sharing your journey openly and honestly. That is an incredibly difficult thing to do.

    My heart goes out to all of you.