If you’ve tried to call me in the last few days, I most likely didn’t pick up the phone (unless you were Dr. Shroff). My full-time, round-the-clock job has been getting information about Thymic Carcinoma, chemo, radiation, side effects, doctors, and experts. I’ve learned terms like retrospective series, microscopic transcapular invasion, and adjuvant chemotherapy. I am saturated in what little information there is out there.
But when a long long longtime friend called, I stopped with the information overload and answered. And once again, simple words from a friend helped me see more clearly. She told me a story about taking one of her sons to specialists for an attention disorder. She said she heard differing opinions, but when the right doctor made the right diagnosis, she and her husband were instantly at peace. They knew immediately it was the right answer. She hoped that would happen to me, too. I had doubts I’d be able to square two polar opposite recommendations about chemotherapy.
Turns out, she was right.
Patrick and I went in to see Dr. Wallace Akerley, whom I had already Googled to learn that he is a chemotherapy expert. I know chemotherapy. I know it lasts for months, makes me lie-on-the-bathroom-floor sick, makes my hair fall out, etc, etc, etc. I went in to the office like I said I would, armed with the medical review that says there’s no proof chemo will help me. I’d highlighted critical passages and even the reference list that included two of my Livestrong-connected doctors, one of whom already said he didn’t recommend chemo for me. I had printed bio’s of doctors I knew wouldn’t support chemo as treatment. I went in, sword half unsheathed, ready to parry any suggestion that standard chemo treatments would improve my life chances. None came.
Dr. Akerley agreed that there is no evidence that regular, high dose chemotherapy would help me at all. He said were there hard evidence to that end, he would argue with me all day long. He called the findings “soft.” What he suggested instead is low doses ( less than 1/3 of the regular amount) of Carboplatin and Taxol once a week to improve the radiosensitivity of the radiation treatment. (Another new word I’ve learned.) The chemo isn’t to treat me, it’s to boost the effectiveness of the radiation. Basically, he explained that radiation kills some cancer cells, nearly kills some, and doesn’t do “diddley” to others. (He’s very technical. I like him already.) The low doses of chemo help the radiation kill more of the nearly-killed cells and help it do more than diddley to resistant ones, if there are any.
Critically important to me, he also says this combination and dosage won’t have the side effects of the chemo that I know and hate. My hair won’t fall out. I probably won’t get sick. It will magnify the side effects from the radiation, which include esophagitis. That’s when the esophagus gets so irritated from the radiation that it’s painful to eat, swallow, drink, etc. It sounds ghastly, but it’s a side effect I’d expected from radiation anyway. Also, I’d only get chemo treatments during the weeks I get radiation, which is 5 or 6. Standard chemo lasts 12 to 16 weeks.
I ran this by Dr. Shroff, and she likes this plan. So does Patrick. It’s a compromise I didn’t expect but am super comfortable with. It kind of feels right. I’m still waiting for my official third opinion and my last Livestrong-generated opinion for validation, mostly. I am going to sit on it for a couple of days, but we’ve already gone ahead and made a seat reservation for me in the chemo room for October 22.
This unexpected upturn of events has cheered me up immensely, so I’ll tell you what I’ve been doing besides trying to become a Thymic Carcinoma expert. I returned to the pool to swim. I don’t have great range of motion so my stroke looks more wonky (wonkier?) than normal. I also can’t seem to to fill my lungs (Patrick says, “Welcome to MY world!”). And I couldn’t get out of the pool. Pushing myself up on the side was impossible. I climbed up the stupid ladder, got a kickboard and got back in to the pool. That was a bummer, and I wasn’t about to climb the stupid ladder again. So with fins on, I swam as hard as I could to the end of the pool, ducked under the water a few inches, and propelled myself up and onto the deck, seated, with my one good arm. It was not unlike a killer whale getting out of his pool at Sea World. I fully expected someone to give me a fish. Later, Patrick pointed out that the consequences could have been dire, had my attempt to killer-whale out of the pool gone awry. It might have been tough to explain why my face was bloody from a swim at the pool. Then again, no one who knows me would have been that surprised.
Finally, there’s this: The first hike in the snow at Park City Mountain. We were the first ones up the mountain in about 7 inches of snow, and I got to really start breaking in my new hiking boots. And now I know these boots will be stomping up Mount Kilimanjaro in February. Life is GREAT.