Cancer, CAR T-Cell Therapy, Clinical Trials, Multiple Myeloma, Multiple Myeloma in your 30s, Relapsed Multiple Myeloma

You’re Gonna Hear Me Roar

This year has been eventful. Not necessarily good. Not necessarily bad. Just eventful. I have high hopes 2018 will start a lot better than 2017. The year started with my blood work slowly creeping up where it shouldn’t, all the while my right eye was becoming smaller and smaller. What I thought was sinus related turned out to be a plasmacytoma behind my eye. After several MRIs, a PET scan, surgery in April and radiation in May, the tumor was gone and I was starting to get used to my new treatment regimen of chemo (Pomalyst), immunotherapy (Darzalex) and more fucking steroids.

30 pounds gained and a lot of sass later, the doctors reduced my steroid dose along with the chemo in May. When my blood work started rising again this Summer, I went back to Emory in August and they increased the chemo and immunotherapy to the max doses. Thankfully the steroids are still at 30 mg per week as opposed to the 100 mg per week I was initially taking. I’m not eating six (full) meals a day anymore, but I have not lost all of my steroid sass. I am a lot less likely to actually punch someone in the face for annoying me or to pull a gun on someone in traffic for cutting me off, but I still have fantasies related to both scenarios. I’d just drive my car into vehicles that piss me off, but I like my car too much to do that to it. This is precisely why I don’t carry a weapon: you’d absolutely see my ass on Live PD acting crazy. I’d be a regular fixture just like that hotel off Bush River Road behind the old strip club. I’d be all, “What up Kevin Brown?! I love you, you can’t arrest me even though I just shot this person for driving like an idiot! Arrest his/her stupid ass!” Although if I cooperate they may let me go. They let a guy go last week who had a crack pipe between his legs and a rock on the car seat. I guess smoking a little crack might technically be a little less dangerous than actually shooting someone, but I digress…

When asked by nurses this past Spring if my appetite was okay, I really didn’t feel it necessary to garner a response. What does the scale say? I’m pretty sure I look like I haven’t missed too many meals. As Weird Al so eloquently put it, I have more chins than China. I can’t even get a good selfie angle at this point. Maybe y’all could give me some of that chemo that’ll make me puke and counteract some of this fucking overeating I’m doing. K. Thanks. I suppressed the steroid induced rage, increased by my disgust over the weight gain, and held it to a slightly saucy, “yes, it’s a little too okay.” And yes, I’m completely aware that I should be thankful I can actually eat and hold down food while I’m being treated for cancer. I realize I’m lucky (but let’s get real for a second, I’d be a whole hell of a lot luckier if I just didn’t have cancer). Regardless, I still reserve the right to be pissed that I gained 30 pounds. When I referenced eating six full meals a day I wasn’t exaggerating. I’d wake up at 3:00 am, my stomach growling, and have to get up to fix myself a snack, which usually consisted of peanut butter on a piece of wheat bread since I didn’t feel like getting fancy at 3:00 am. And I sure as hell can’t sleep well when my stomach is growling. Typically that’s when I start dreaming about eating cake. And then all I want the next day is fucking cake, which is awesome when you’re already over eating. Peanut butter on bread was probably the better option.

I completed radiation at the end of May and the treatment was simple and straight forward: 10 treatments that took about five minutes each, including the time it took the techs to get me properly situated on the table before they zapped me. My right eye is officially the appropriate size now (it’s still slightly smaller than my left when I smile or imbibe) and my follow-up PET scan came back indicating my head is clean (of tumors, anyway).

I started working out again regularly over the Summer and had lost about 12 of the pounds I gained in the Spring. I was pretty excited about my progress, but ever since they increased my chemo in late August I’ve pretty much stayed sick. I get over a cold and a few days later I either relapse or catch another. I give myself shots two to three times a week to stimulate white blood cell growth (to help my immune system), but that hasn’t seemed to keep me from catching everything I come in contact with. Being sick for roughly two months has put a strain on my ability to work out, but hopefully I’ll be able to stay healthy long enough to get back into a good routine because this moon face has got to go.

My latest health related development is that the increase in meds isn’t making me any better. I’m not getting terribly worse, but the Myeloma is still progressing. I could take this as bad news, but honestly I’m not that upset about it. I went back to Emory a couple of weeks ago and my doctor let me know I’ll be included in their clinical trial for CAR T-cell therapy. I have wanted to get in on this treatment since I read about it last year, so I’m actually excited. CAR T-cell therapy is working well for folks who have other types of blood cancers and have tried multiple treatment regimens with no success (it’s been tested a lot with different types of Leukemia and actually has two FDA approvals now), and the first phase of the clinical trial for Myeloma had pretty remarkable results, although the study was very small.

I go back to Emory December 5th to sign consent forms and learn more about the clinical trial and schedule for treatment. For now my doctor has added another chemo to the mix (Cytoxan) in order to keep me stable until I start the clinical trial. Since I’m on so many meds, I’ve arranged with my manager to work from home for a while to try to limit my exposure to sick people and keep myself as healthy as possible leading up to the clinical trial. The day of my last appointment was the same day Emory actually received their approval from the federal government for the trial, so I’ll get a lot more information during my next visit.

I will try to explain CAR T-cell therapy in the least scientific way possible (bringing this shit down to my level because science was never my thing). The doctors are going to harvest some of my T-cells (white blood cells) and genetically modify them to fight my disease. This modification is very personalized based on a person’s individual diagnosis, and the cells will ideally fight only the diseased cells and leave healthy cells alone (as opposed to chemo which attacks both unhealthy and healthy cells). The modified cells will then be left in the lab to multiply to billions of cells, a process which can take anywhere from two weeks to a month. Prior to the harvest and after the harvest while my cells are multiplying like bunnies, I’ll be getting some other type of chemo cocktail. I’m not sure yet what that will be, but I’ll know more when I go back to Emory in December.

When my cells are ready, I get to experience another extended stay at Emory Hospital where the food tastes like what I’d imagine some shit off a Garbage Pail Kid sticker tastes like (I’m guessing a very specific demographic will get this reference – I have a very vivid childhood memory of a Garbage Pail Kid sticker I put on my bedroom door that had a girl on it jumping rope with her own snot, which honestly, I feel like I could do right about now).  Well, it either tastes like that or like something from Guy Fieri’s restaurant (yes, I have expanded my hatred of Rachel Ray and Sandra Lee to also include Guy Fieri’s irritating ass). Thankfully I know what to expect and I can bring in my own groceries. And hey, maybe I’ll lose some of this steroid weight! I’ve been told I’ll be in the hospital for two weeks when they infuse the prepared cells into me, and I’ll have to stay in Atlanta for two weeks after I am discharged so the doctor can closely monitor me.

Obviously there are risks with the procedure, as there are with any procedure. My stem cell transplant could have killed me. The chemo I’m on can cause Leukemia. This is what I want to do because my actual body will be the medicine it needs to fight my disease. I can ideally stop taking so many drugs and possibly have a more normal life. I’m hopeful this will work, as it has for a lot of other people who had run out of options and were told there was nothing else that could be done for them. Average life expectancy for someone with my diagnosis is five years, and my doctors and I are working hard to turn that into 50 instead, so I’m down with trying the latest scientific advancements available, even if I’ll essentially be a lab rat. I will be a walking GMO when I’m done and I’m totally cool with that.

Meanwhile, it’s my absolute favorite time of year. I’m such a kid from October through December. I love Halloween, Thanksgiving, Christmas and New Year’s. I love decorations, lights and (real) Christmas trees. My sense of smell (which I lost last Summer) is starting to get better, so I’m hopeful I’ll be able to smell our Christmas tree this year. We’re doing our best to keep Olivia’s life as normal as possible through my treatment adjustments, so she just started ballet lessons. She’s wanted to take ballet for a while and we thought this might be a good time to get her into it so she has something else to focus on. After her first class, I was talked into letting her be in The Nutcracker this year as a mouse (and maybe a Bon Bon) and she is so excited. As a former dancer, I’m doing my best to control my inner Dance Mom. But I’m absolutely delighted on the inside.

Typically I get a case of the post-holiday blues, but this year I should be pumped for the CAR T-Cell therapy. The doctor said I’ll probably be in Atlanta in January, so we shall see. In the end, all of this is good and I feel like this is the best opportunity out there right now to get me better. I’ll rock this shit. I’ll roar for sure.


2 thoughts on “You’re Gonna Hear Me Roar

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