As you may have noticed, I took a little blogging break. I didn’t mean to. In fact I have 4 unfinished posts that I just got irritated with writing, so I gave up. I’m such a quitter. First a cancer patient, now a quitter, how pathetic. I’m so ashamed or whatever.
Anyway, what’s been happening hasn’t exactly been the most exciting news to report. Hopefully many of you have kept up on my dad’s CaringBridge as he seems to do a great job documenting the history of all of my doctor’s appointments, hospitalizations, drug administrations, test results, and blood work. I’ll try to summarize a bit here just in case you missed it.
So r-HyperCVAD turned out to be a major tease. After 5 rounds of therapy and 24 days in the hospital it shrunk the major tumors we were looking at, got the cancer out of my spleen and bone marrow, then changed its mind and let the fucker grow back bigger and “hotter.” This was very discouraging news as I was fully expecting to hear that everything was gone and that I could go ahead and proceed with my autologous (easier, shorter recovery time, use my own stem cells) transplant and move on with life. Alas, my cancer is smarter than the state of the art first line of defense against Mantle Cell Lymphoma. I guess I’m not surprised, it is my body after all.
So we heard this news in late May and began to revise the treatment plan with much more tentative steps. Quick and dirrrty: new chemo, test, second round of new chemo, test, radiation, test, allogenic (harder, longer recovery time, use my brother’s 10/10 matched stem cells, high risk high reward) transplant, wait 6-12 months, remission? Got it? It becomes a bit like a choose your own adventure novel at some point with all of these decision points. I really liked those books growing up, but this one scares the shit out of me, especially since I read every single combination when I was a kid. Also, each step along the very very long way sounds like the total opposite of fun with no easy way out. I can always find the easy way out or at least some way to half-ass it so it’s not so hard. No dice this time.
Whatever. One foot in front of the other. Keep it moving.
Anyway, last week I did my first round of VTEPA, a stronger chemo regimen with more side effects and risks of damage to my health which was developed at Emory. It has clearly knocked me on my ass, so I’ve been recovering all week. Seriously, all of that hyperCVAD crap was supposed to do these terrible things to me and hardly any of it ever showed up… not so with VTEPA. I’ve been puking, nauseous, sleeping a ton, ringing in my ears, I think I just got my first official mouth sore today, and all of those house of horrors things that cancer is supposed to bring you. (PS: I just googled “euphemisms for diarrhea” to spare you from reading that word and came up with nothing nicer. It’s now officially in my search history. You’re welcome.) Anyway, I get it now. Cancer patient. Unpleasant. Thanks for blowing a giant hole in my denial.
So I’ve been getting blood work all week to watch my WBC and platelets plummet, which is great. Back to living in a bubble with no immune system after feeling kind of frisky and tricking my friends into thinking that I can just go anywhere anytime. I’m back to telling people “I’m sorry, I can’t, don’t hate me.” Meh.
We are doing a CAT scan (a more targeted version of a PET scan) next Thursday to find out if this first round of VTEPA has done any good and if so then we will probably do a second round. Joy. I can only imagine what the “cumulative effect” of this chemo is going to be like after a second round. On the bright side, I didn’t die from this regimen like 2 of 16 patients did when they first tested it in 2006. So there’s always a silver lining… you just have to really wanna see it. PS: If you’re a researcher, and your regimen gets used regularly, please write a follow-up study that is accessible so that nerds like me who read your articles don’t have to be so afraid. A 12.5% mortality rate from just receiving the treatment is not a happy figure! Luckily there were a lot of anecdotal reports from doctors and nurses at Emory to reassure me that this regimen is “used all the time, at least once/week” with little to no “bad outcomes.”
Not that fear of dying has anything to do with surviving treatment, but… it does sometimes. So feel it and keep on cruising.
After that is complete we will probably be doing radiation. (insert ominous movie music here) “It’s not like you’re thinking of what they were doing back in the 1950’s where people got burned and stuff” says Dr. Langston. “They’re like physicists with a scalpel and can get at some of the areas we can’t reach with the chemo with their cyber-knife.”
Now, I don’t know what she was thinking I was thinking, but I wasn’t thinking about anything burning in the 1950’s… so I’m glad she put that image right into my head before explaining what the hell this Nintendo chemo is going to be doing to me. Luckily she is passing that off to my new Radiation Oncologist Dr. Natia! Now, Natia is her first name since apparently the last name so difficult that isn’t even worth attempting to spell or pronounce. (For the record, it’s Natia Esiashvili, MD) I hear she’s the go-to expert for radiation with lymphoma and that Emory has “state of the art” equipment that she uses. So that’s good I guess. I think I’ll wait a tick before I do any research on this radiation thing and let her explain it to me first.
So that’s what I know. At least about treatment that is. This is going to take longer than I had hoped and will be harder than I first imagined. My lead feeling here is annoyed, but also kindof scared…. as you might have noticed.
In the meantime, I’ve been trying to make the most of my new life. Reading a lot, made a trip to Amicolola Falls for hiking, made a road trip to Charlotte, NC to see my high school besties, drinking some fantastic cocktails and eating spectacular meals (shh, don’t tell my doctor about the cocktails), shopping for makeup to draw on eyebrows with my brother and sister-in-law, and overall spending as much quality time with friends and family as I can. I even went back to work for a few days, promising the doc that I’ll be bathed in antibacterial wash, wearing a facemask, and staying the hell away from high traffic / high client areas.
I’ll try to keep this a little more regular and will hopefully have better news to report in the future. In the meantime, I’m going to take another Zofran and some Immodium.