A less philosophical, more informational, update on my health and treatment situation today.
Let's begin at the beginning of last week when I went to see my new primary care physician (because, yes, you still need one of those even when you have cancer). Nothing like coming in a little hot the first time you meet someone. Literally. I was running a low grade temperature and had achy joints. Under normal circumstances this would not be a big deal. A touch of a bug. Day or two of lots of liquids and rest, and done.
However, these are not normal circumstances. By the end of the day I had three doctors inquiring about my symptoms and guessing at what could be ailing me (which, by the way, included rheumatoid arthritis and something called tumor fever). Turns out it was none of the above. It was just a bug that my body fought and killed (well done immune system!). I was on the mend by Wednesday morning, but checked my temp obsessively all day. No pain or fever is a small thing anymore. Paranoia is, apparently, warranted. Welcome to the new normal.
Thursday, despite the beautiful weather, was probably the toughest day emotionally that I've had since embarking on this detour. I think it was brought on partly by the let down after a month-long string of guests (I put my brother on a plane back to China that morning). Suddenly there was no one to distract me, no one to stay strong in front of, no where to hide. It was just me, in a hotel room in San Francisco. Pity party of one, all the way. It was like a water main broke between my heart and my eyes. An uncontrollable fountain of grief flowed. For the life I used to have, for the life I dreamed I would have. For my husband. You name it, I was crying about it. I know it's healthy to allow myself a few hours like this every once in a while. But, it is uncomfortable, and it leaves evidence by making my eyes puffy ... for a full 24 hours.
In the midst of my meltdown the clinical trial coordinator from UCSF called to talk with me about where things stand. Poor woman. She must think I am a hot mess. I could barely ask a question without tears flowing. To satisfy the trial protocols I have to do another PET scan, another brain MRI, and a few other tests. She also broke the news that they have an administrative issue on their end which is delaying putting new patients (i.e., me) into the trial. This will hopefully be cleared up early next week. This means more waiting, likely another couple of weeks, before my first treatment. And, on that day, this knowledge meant more tears.
Mercifully, one of my lifelong friends, who is like a sister, lives about two blocks from the venue for my pity party. I picked myself up, met her for tea (actually she kind of just showed up even though I kept telling her I was fine), and she gave me the grace to feel it, to cry, to have my bad day. She has had her own tragedies to grieve in life. She encouraged me to let this happen. To take care of myself. To do one thing every day to help me relax, to allow the emotions to flow. Later, Erick arrived and we had a lovely dinner and a thoughtful conversation about our fears. Team Soderlund in action.
The next morning, I was puffy-eyed but back in fighting form and ready for my second liver biopsy, a requirement for the clinical trial. The procedure was totally different from the first biopsy I had last month. The two women doctors who did the deed didn't loop me up on drugs, but rather numbed the area so I was wide awake through the whole thing. During the procedure one of them was asking me about myself, my career and this diagnosis. She had one of the best reactions to the latter when she said "that really sucks." Exactly. She also told me I am skinny. Bless her.
Afterward I had to lay flat for a full four hours before they discharged me (boring, boring, boring). Throughout this time I was waiting impatiently by the phone for a call from Guru Oncologist to discuss the clinical trial. The phone never rang. Once Erick and I were set free to battle Friday afternoon Bay Area traffic (the struggle is real), I connected with the clinical trial coordinator who said she'd remind him, but that it might now be Monday before he called. More waiting. But no crying, this time.
The pace of getting my treatment plan moving ahead and the prospect of doing all of the diagnostic tests I have already done all over again, is leaving me feeling a little left out in the cold. This is just a feeling, and I know intellectually there are good reasons for the delay and tests. I know no one has forgotten about me. If nothing else they want another guinea pig for the trial. It's not like patients with Stage IV melanoma, previously untreated, with brain metastases, are falling out of the sky every day. And for me, it's worth the wait given the significant differences in survival rates between "standard" treatment (i.e., FDA approved) and the treatment given under the trial. I would rather take our best shot first, while my body is strong and free from the burden of fighting this disease for months, or years. That is worth waiting for.
And, I need to remember that in the grand scheme another couple of weeks isn't going to make a difference. The treatment will either work for me or it won't. I am just anxious to find out. Anxious to feel like there is at least a chance that something is fighting these tumors in my body. Anxious to have a schedule and routine again, to "plan" my days, rather than starting every week with a mostly blank calendar waiting to be filled with tests and visits to doctors. Anxious to know how I am going to feel during treatment, to know what kind life I will be able to lead.
Letting this anxiety surface, but then be put into proper perspective is a daily, sometimes hourly, discipline. Faith, fueled by hope, is the antidote to anxiety and fear. Faith that things happen as they are supposed to and that I don't need to understand why all the time. After all, faith is the substance of things hoped for, the evidence of things not seen.*