About Me: Cancer Edition
Iāve gained some followers and not everyone knows the whole story. If nothing else, this will be an easy-to-link-to summary to catch old friends up to speed. Thereās no need to read this if youād rather skip it; I wonāt hold it against you. Iād rather skip it, too, but Iām the one with the cancer, so I donāt have the option.
It first showed up in late 2013, and it was pretty apparent immediately what it was. The dermatologist I went to in January of 2014 knew it as soon as he looked at it. He sent my biopsy results and information over to the University of Michigan because theyāre one of the leaders in melanoma treatment.
Melanoma, if you donāt know, is the worst kind of skin cancer. My melanoma is a particular kind called ānodular melanomaā: instead of spreading out along the skin, it goes vertical, which means it not only raises up from the skin, it goes deep down into it as well. Nodular melanoma is the worst kind of melanoma (thus making it the worst kind of the worst kind of skin cancer). But if mine hadnāt been nodular, we might not have known it was there. Yāsee, I had a mole growing on the back of my head, in my hair. I kept whackinā it with my hairbrush. Thatās how I knew it was there, and growing quickly. I couldnāt see it without mirror assistance.
A couple of surgeries followed: to get the rest of the āinitial siteā cleared (the dermatologist had known this was the sort of thing that would follow and deliberately didnāt take as much off as he could have, because taking more would have required a longer healing time before I could be treated and he wanted me treated ASAP), to test the local āsentinelā lymph nodes, then to clear out all the lymph nodes on the left side of my neck, because the cancer had already spread to there.
After that, we discussed options and decided to wait and watch. It meant scans twice a year at U of M (we lived all the way across the state, near Lake Michigan), but that wasnāt so bad. And so, for almost exactly five years, thatās what we did. And every time, the news was good. No Evidence of Disease (NED).
In February of 2019, my scans turned up something on my liver. We did a biopsy and, sure enough, The Cancer Was Back. Not only that, it had progressed to be farther away from its initial site (the back of my head). I had already been diagnosed at Stage IIIC before; now I was Stage IV.
Stages I, II, and III break down into As, Bs, and Cs (so you could be Stage IA, IB, IC; Stage IIA, IIB, IIC, etc.,or whatever, depending on the criteria). Stage IV is just Stage IV; it doesnāt break down into letters. There is no stage after IV.
I was - and am - officially at the worst stage of the worst kind of the worst kind of skin cancer. The cancer was on my liver, in a couple different spots, and on my spleen.
But I wasnāt worried, because I kept up with things and I knew about a great immunotherapy treatment for melanoma that was a combination of two drugs. And that was, indeed, what my oncologist at U of M wanted to start me on. Iād need to have treatments once a month. It would be the combo of both drugs at first, and then Iād move to just one of them.
We moved to Ann Arbor (where U of M is at), and I started the combo. Side effects werenāt bad in the short term, but I developed adrenal insufficiency during the course of the combo treatment. That complicated matters a bit, but I went to just the one drug and my side effects eased. We began to talk about surgery to cut out the liver tumors. The liver surgeon asked for an MRI instead of the usual CT I would have gotten.
The MRI showed a lot more liver spots. As well as an increase in the size of the spots we already knew about. Yāsee, some of the tumors were so little that they just hadnāt shown up on the CT yet. The MRI is a more precise (and expensive) scan, and it caught the ones too small to show up on the CT.
My oncologist basically said he didnāt have anything else for me. Immunotherapy is the big dog in the melanoma world, and I had progressed (gotten worse) while on it. He suggested I go to this place called START where they do clinical trials and studies of new and upcoming drugs. Itās not in Ann Arbor though, itās over in Grand Rapids.
So we moved to Grand Rapids.
Iāve been through one clinical trial but I progressed while on that, so I was taken off of it. Weāve run into the same problem here that we had in A2, really: most of the studies for melanoma are immunotherapy-based. Itās hard to find something that isnāt.
In the meantime, my liver is being literally replaced with cancer. My entire left lobe and a good portion of the right is just tumor now. My oncologist at START recommended me to an interventional radiologist who is going to pump my liver full of Yttrium 90 (Y90), which is a radioactive isotope that is administered via little beads so tiny that theyāre 1/3rd the size of a human hair. This targets only the cancer and, over the course of months, should help shrink the tumor(s).
Itās a treatment, not a cure. But it will hopefully buy me time for START to find something that could cure me, or at least work better than the last study did for me. At some point, my spleen may be removed entirely, but thatās not a vital organ. The liver is the big concern.
I also have some melanoma on my scalp (and a spot in my freaking ear), but those are potentially useful for future studies. Anything I take for the cancer at this point - other than the Y90 which is specifically and only ever for the liver - has to be systemic: it has to fight the cancer EVERYWHERE. So if my little scalp spots start to shrink, that means the treatment is working. And itās a lot easier to biopsy a bump on my scalp than it is my liver or spleen.
WHEW! Thatās a lot, and it really is the quick version. I have times when it seems hopeless but Iām doing pretty good at staying positive, overall. Still, Iāve come to the conclusion that liver cancer is how Iām going to die (unless I get struck by lightning or hit by a bus or something random like that). Itās just a question of when. Thatās what Iām fighting for: time.
Fingers crossed for another good, non-immunotherapy clinical trial to crop up thatāll take me. In the meantime, I just work on living my life. Iām still pretty good, all things considered; I can still do most of what I want to do, but I wear out quickly. Iāve got physical therapy to help me work on my stamina and strength. I havenāt given up. Itās way too soon for that.













