I spent an hour yesterday cursing my way through our households vast ruler supply seeking a devise that measured in centimeters. I was determined to respond to my newly arrived test results with my head not my heart (or whatever part of me ceases to function when it encounters dreaded words like new and growth and lung.) With a ruler found that used centimeters I could make measurable those words. And so my test results that initially took my breath away were neutralized a bit.
I did not get a wonderful result on my ct scan of this week. But it was at worst soft bad and, perhaps, almost neutral. I dont see my doctor until Friday so I still speculate. Of my 5 cancerous nodules in the abdomen and pelvis 3 showed modest shrinkage, two showed modest growth. Two new shadows have now made it in to my left lung for the first time but only time will tell if they are indeed cancer and if they chose to grow. My right lung stays stable.
My big goal these days is disease stability. My current pattern of some shrinkage and some growth, might average out to minor changes in disease volume but they are not disease stability. If I was not midway through a new treatment regime these results would be more dire. But since these drugs are slower to work, we can look at the possibility of positive results around the corner. Why the hell not.
Its not been an easy few weeks. The main drug I am on, doxil, aka the red devil, requires enormous preemptive work to minimize the devilish impacts of burning, burning, burning. A chemo buddy (thank you, Holly) helps me ice during treatment (not easy!) and then I stay on ice as much as I can for the next few weeks. This drug is a cumulative one so once the burning starts it only gets worse with each cycle. There is no real solution for it – ice, salve, ice, salve. Avoidance is your best plan. I now better understand the starting suggestion of no repetitive motions which made little sense when shared as advise – why did that mean no washing of dishes or housework. But now I get it. (Of course, they are too shy to say no intercourse.)
My poor butt brings me to tears as I try to find clothing that I can wear and a chair that can accommodate. And then there are the poor hands and feet. The left hand curling to a painful claw for the majority of each treatment cycle. The feet look better but hurt, hurt, hurt especially when rested in the only shoes I can still wear. I hobble and curse. And by bedtime, cry.
Initially, I so wanted the test results to be good enough to keep me on doxil because that would mean that there was some positive news after a long year of disappointments. But the night before I got the test results I finally decided I could endure no more of this being burned alive. The test results arrived as the peak of the burning passed. I live in the now and right now the residual sores on my butt, hands, and feet are manageable. I presume that my cheerleaders and I will manage another few cycles of this hell if the doctor recommends it.
For those who visit, you may witness more pain. And you may be asked to sweep a room, or straighten the bed. (There is just so much that I can not do while on this drug. And Mike is needing to do so, so much.) If everyone completes some minor task, the house may stay neat and that is the kind of detail that makes the world of difference right now.
In the last week, as I tried to relocate from one spot to another with enormous pain, I told Mike, “dont ever let anyone say ‘that at least she is out of her misery now’ because I can accept this pain.” Of course, a few days later, I wondered. But pain passes. And then I stare in awe at a flower dropped off by a friend and appreciate being here. This is hard but so is life which I so choose. And so that is my small update.
Luckily, by Saturday’s dance part I should be at my peak of recovery – hope to see you there. xoxo marcy