Diagnosis: Afterparty

Once again, I’m plagued with nothing interesting to discuss here. Which is once again wild, because it’s been nothing but good news lately. And while the blood tests are beyond promising, and my CEA has now been undetectable for 2 rounds of chemo now, I’m still living in the I’ll-believe-it-when-I-see-it on the next set of scans (which are next week!) I’m basically living with confetti in one hand and a fire extinguisher in the other.

All my other bi-weekly bloodwork is beyond beautiful, as well. My liver is doing great, some inflammation markers are down, my kidneys are killing it, my iron stores are still up and the anemia is only mild now. I had my B12 checked since being on this vegan diet, and that’s still in a good place too. I also asked that we look at CA 19-9, another (albeit less reliable in colorectal cancer) tumor marker that my oncologist had checked before any appointments started in February. That’s still pretty high BUT is also coming down. Per some quick research, my kind of cancer doesn’t specifically produce CA 19-9, but it has more to do with the liver dealing with cancer cleanup. So to me, it sounds like a lot of the tumors have died, but since they died so quickly, my body is still cleaning up the excess tissue they created. So my expectations going into next week’s scans look more like “some shrinkage, but activity level has decreased immensely” rather than my moonshot hopes of “magically it’s all gone and you are a literal miracle of science.”

My diet has continued slipping from a whole food vegan diet into slightly more processed vegan foods; and with every Oreo I eat in fear my CEA will rise, it doesn’t, and I’m reminded I can kinda live a little when it comes to food. I’m still eating a lot more fresh food than I have before cancer, so still a net positive. And my juicing habits have slipped a teeny bit, but I’m still working hard to get extra vitamins in my system- I’m just more focused on making sure I’m eating enough iron, protein, and fiber.

I’m still running 2-3x a week, and still oddly getting faster, closer and closer to my old pace. This is apparently VERY abnormal for someone who just finished round 7 of chemo. My nurse yesterday was shocked to hear that, in a way I could tell she didn’t fully believe me. Girl, if you don’t think I have a spreadsheet to show my proof in data, then you have no idea who you’re dealing with. After I showed her my intense symptom tracking sheet, asked for the additional labs, and explained how well I’m doing- she literally asked me “what do you do for work that you’re so on top of this data?” Please don’t question a Database Administrator on chemo, I literally get enjoyment from tracking absolutely everything. I’ve recorded data and optimized just about every part of this journey that I possibly can. And while that might seem like such a chore for most people, it brings me so much relief to at least be able to see patterns in the side effects each round. And know that 1 bad run doesn’t negate the positive trend towards speed and mechanically efficiency.

After a visit to my dermatologist, I’m now on a low dose Minoxidil to hang on to the hair I still have, which apparently no one really notices except me. But also great because I’ve hit a plateau with my hair thinning- only TWO strands came out in my last 2 showers! Once I switch to chemo pills, if that winds up still being the plan come August, apparently they don’t stress hair follicles as much, and the Minoxidil can stop helping me hang onto stressed hairs, and get to work acting like “hair fertilizer” and getting me back to where I was. All this coming from someone who wrote a whole blog entry about not caring if I even lose all my hair, funny how you change your mind once you’re in it.

Fatigue and nausea on infusion days & at home pump days, is starting to creep up on me a little bit more. But just enough that taking 1 Zofran (which during my first round of chemo, they told me I could alternate that and Compazine every 4 hours to keep up with nausea) fixes it. One pill a day that they originally promised 85 days ago I would be needing multiple times. Still not bad, especially with only 5 rounds left.

I’ve been wearing super tight surgical gloves during the Oxaliplatin infusion (the drug that causes cold sensitivity and neuropathy) and that’s helped a lot with holding cold things. I also have just been doing a really great job at keeping my fingers and toes warm so as to not trigger it, so it barely feels like an annoyance anymore. Cold air, first bite syndrome, and weirdly now my eyes tearing up will undoubtedly trigger massive nerve responses all over my face- but I’ve also found ways to make that less annoying too. Wearing a neck gaiter has helped on occasion to warm up the air I’m breathing, and any residual pain only needs a couple of Tylenol to go away. And there’s nothing a Hot Hands can’t fix (both my fingers, and occasionally my jaw) Such detail, I know, but like I said I have nothing else profound to say today.

Outside of clinical information, life has continued on like normal. DJing more and more, going out with friends, still babysitting my nephew (my immune system hasn’t even flinched at any kid-germs!), and finally got out to our first Orioles game of the season. (I wish the Orioles were kicking as much butt as I am with cancer) More plans to hang out with friends coming up before the month is over- and before we know it June will be here! Baltimore Pride falls on an infusion week- and I’ve stacked myself with gigs that weekend, so mostly plan on resting that week to set myself up for success. After having missed most of Pride month last year due to being in Europe, I can’t wait- even if I have to buy a rainbow wig for the day.

Sorry this has been all over the place, but chemo brain is real & I’m not as great at stringing thoughts together like I might’ve before. But I want to leave you with a gem of a gift I received from my friend Steve (to family reading this, Steve was the DJ at Dimitri and Kellie’s wedding), who went to a show, and the opening act was BIG SIS, the folks who do my new theme song “I Took the Drugs and the Drugs are Working” that you’re all probably very familiar with now if you didn’t know it before: