Carcinoma of Undifferentiated Primary
It took a long time to get a finalized report on my pathology slides. The way Pathologists determine cancer type (if it’s not visibly obvious) is to take tumor cell samples, slice them down, methodically stain them one by one, and then see which unique protein markers present themselves that are unique to a type of carcinoma. CPMC (my current hospital) began testing my tumor cells April 12 and after a week could not find any identifying markers. The slides were then sent to Stanford Pathology where the same conclusion was reached earlier this week.
Thus my official pathology report is that I have an carcinoma of undifferentiated primary. Here again, anyone familiar with cancer knows this is definitely not what you’d prefer, but it does happen regularly enough. What makes my situation worse is that since my lumps are in my GI, my genitourinary, my lungs and my throat, it makes it impossible so far to guess where the primary is. There are oncologists that specialize in any one of those areas, but there are very few cross-over specialists, and there are none that specialize in carcinoma type unknown/default. Maybe we’ll set up the Ted Rheingold institute for Unlucky Fuckers with Undifferentiated Carcinomas.
I feel like this is the worst streak of bad luck I’ve ever had in my life. It’s constantly crunching for us. But Molly and I know there’s nothing to do but accept the reality and fight. Of course it’s brutal for my friends and family too, but maybe later I will try and explain to you how fiercely Molly and I are trying to still live each day as normally and intimately as we can. And if you looked inside our house you’d mostly see us being a family living our days. There are still outstanding DNA and mutational burden set of tests that are being done on my cell samples at a genetic level. They won’t report back until next week, but they may return DNA markers that may expose the primary or at least some hints behind my cancer.
Nonetheless I’m going to start chemo treatment based upon some “fingers-crossed,” best-guesses about the source of the primary, because my tumors are growing so fast I can feel and see them change, and the physical symptoms are growing. After 3 weeks of a chemo we’ll see what happened to the tumors and either double down or try different combinations. I’m in the process of working on second opinions at UCSF and Stanford. This is easier said than done as it means the oncologists there need to review my whole case before one of their specialists proposes they are most qualified to treat me. The trick is they can’t really assess my situation until they have final reports, PET/CT scans and path samples. My path report was finished in draft on Monday, but new hospitals won’t look at it until it’s official final. The PET/CT images don’t transfer through the inter-hospital file system so I’m going to drive some over today since I can get CD copies. Then the path slides need to be shipped to the new hospital and that doesn’t seem to happen fast. I have a great doctor lined up at UCSF so that’s very close, but still haven’t gotten connected to the right starting point at Stanford so it can start there. However, while I’m doing this 3 week round of chemo at CPMC, hopefully I can get both of those queued up as consideration for my second round of chemo.
Here are the the drugs that will be in my first set of chemo tomorrow:
Carboplatin: an (“antineoplastic” or “cytotoxic”) chemotherapy drug
Gemcitabine, an anti-metabolite that interferes with DNA production and therefore cell division and the growth of tumors.
Avastin: an angiogenesis inhibitor, a drug that slows the growth of new blood vessels.
Molly and I have been profoundly overwhelmed by offers of help from best friends to complete strangers. We’re not in need of much right now because we’re very happily at home, joyfully spending time with our daughter. Molly has always loved cooking and taking care of us as a way to center her life, so insisting on bringing meals or watching Mabel seems more like a penalty than a gift. This is going to be an arduous, changing battle, so we’ve remembered everyone who has offered and we’ll surely ask when we need help. And I already can see we’ll be putting out some big asks. But for the time being we’re doing okay.
We really love hearing encouraging words from our friends. And I’ve done more phone calls with close friends than I have since college. (Sorry people born after 1990, I’m not sure you’ll ever understand that). And I love the distraction of getting funny gifs, cute gifs or beautiful pictures. I could look at beautiful pictures all day even when I’m healthy. There’s so much to relish about the amazing confluence of events that led to each moment in our planet’s and universe’s existence. Or when someone took raw materials and created a state of beauty out if it. That’s a really wonderful way to let me know you’re thinking about me. There has definitely been one too many letters or tweets or SMS from brief acquaintances or strangers looking for their own peace on this topic, but we just try and delete them before their emotional load transfers to us. I’ve often committed part of my time to sharing, helping, and pulling up, but our help shop is closed for the time being due to family emergency. You’ll have to go to someone else to make sense of your fear.
[Too read my updates, click that green “follow” button next to Season of the Witch. Or grab the journal URL https://medium.com/season-of-the-witch and put it in your browse toolbar or RSS reader or those other pre-phone thing we used to do.]
