VTD-PACE, first day of treatment.
Got to the hospital around 8:15ish in the morning. Pretty sedate day, really. Port accessed, blood tests taken and then a lot of downtime before the pre-meds and the cocktail of Doom was ready. I spent most of it sleeping … I’m on a new sleep aide that I started Saturday that is also supposed to help with the Dex side effects and I think it’s working a bit too well. Thankfully I was able to just relax and get some rest today. My blood counts, for once in the last few months, were not bad enough to merit a transfusion too so yay!
For those who missed it and don’t know, VTD-PACE is a salvage chemotherapy. Our plan is 1 of these treatments per month for 2-3 months followed by a stem cell transplant (auto, meaning my own stem cells). This year my Myeloma started to get ornery and the numbers are a bit out of control, so “salvage.”
I’m currently getting Velcade (shot in stomach), Dex, Cisplatin, Cyclophosphamide, Adriamycin and Etoposide. I was told most of the side effects are the typical ones (nausea, fatigue, hair loss) but that each drug had it’s own idiosyncrasies in terms of dangerous ones. One can damage the heart, one can inflame the bladder, etc.. On top of that there’s a risk that the chemotherapy destroys the cells (there’s a name for this) in your blood stream that can end up causing kidney damage. Those side effects are why I’ll be getting monitored every 6 hours until I’m released on Friday. The lenalidomide (sp?) will begin hopefully later this week as soon as it arrives (hospitals apparently don’t stock the stuff and mine hasn’t been sent yet but the oncologists are on top of it).
Because of my past with it I’m mostly concerned about the Dex. 40mg a day for 4 days or something equally as absurd. Hoping the new sleep aide who’s name I keep blanking on (I cheated and looked it up, “Zyprexa”) will help — it’s an anti-psychotic that also helps with sleep. Since I’m pretty sure they frown on blazing up a joint in the hospital room you go with whatcha’ got I guess.
I do feel hopeful by the way. Never assume just because I tend to come across as bitter here that it equates to “hopeless.” I am bitter a bit, but it’s rare that I’m not thinking of something funny. That goes back to some MASH episode I watched decades ago, btw. There was one I’ve never found again where Hawkeye (Alan Alda) is explaining to someone that the reason he and his friends do all of the crazy stuff is that if they didn’t, in the middle of a triage camp in Korea, they’d go insane from the horror. I 100% get that. Looking at photos of people wearing silly costumes and stuff to chemo it’s obvious to me that most of us get it.
I mean it sucks, right? So have fucking fun with it. Met some really amazing people on staff at CBCI and the hospitals over the years just by making them laugh. After I finish this entry I have to make a list of documentaries I’ve loved for nurse Rita, another awesome nurse at PSL that I’ve worked with before.
Not only am I hopeful but I’m in a “fill it to the top and let’s kick this fucking thing’s ass” mood right now. Enough’s enough, and if I have to live through the next two weeks with all the fun side effects, etc., I not only better get some good results or I’m, well, I dunno. We’ll try something else and rock that. Whatever, you know? I think being pragmatic and active in seeking treatment’s the best you can do in this situation, and I’m doing it.
With lots of cool stuff I snuck in from Trader Joe’s and hid in the closet.
Nothing too deep to get into today — I’m in a good, positive mood and I’d rather not risk giving that up quite yet by getting into things. I’ve had to do some hardcore “don’t think about this” work in the last few days which, except for my daughter crying and telling me she didn’t want me to go” repeatedly (which broke me down last night) I’ve been mostly able to do. I’d like to write about my visit to the scuba shop I used to work at this week but we’ll see. Trying to avoid the known triggers right now for obvious reasons.
One thing I would like to mention, and I’ll be putting up some sort of Surgeon General’s warning page about this when I find the motivation (and some other blog fixes I have in mind). I write to exorcise things. I do it in a style that makes it read smoothly (well, most of the time) because I did things like this for a living and learned how — I think in column format now when I write. It works brilliantly most of the time but with a caveat — those who read it tend to only see the negative things I’m writing about and assume that’s me.
It’s only half at most, though, the Mr. Hyde half.
That being said, I firmly believe EVERY cancer patient has the thoughts I write about and similar reactions even if they keep them quiet. I made this blog public because I prefer straight talk and it was frustrating to me when I was first diagnosed to not be able to find that level of brutal honesty in most of the blogs I ran across. Which is fine, right? Look not only do I think it’s great if your faith or your indomitable positive spirit is what gets you through, but I envy you in a lot of ways if you’re that person. It’s just not how I operate, and as a result this blog is going to read as bitter, angry, crass … you name it. So if you need more positive emotions I won’t be offended, promise. Hell hook me up and I’ll check them out!
But pssssstttt … if you too get frustrated with your personalized death sentence, rest assured that others have felt it, and I’ll be your voice if you don’t want to admit that to people. I understand that too. K? I bet there’s at least one person reading this who not only would never in a million years drop an f-bomb and cringes when I do. But staring at those ceiling titles one day trying to justify all of this in your mind, you dropped one. Even if it never crossed your lips. And that’s OK. Don’t say it out loud; I’ll say it for you and it’ll be our little secret. You deserve that F-bomb, my friend. Fuck cancer, and fuck chemotherapy, and fuck what it’s done to our lives, the experiences we’ve had to have, the fear of test results, the never-ending hypochondriac level of concern when something new happens, yada yada yada.
You aren’t alone. And as I’ve discovered four years into this, neither am I. I’m amazed in just the last month how many really neat contacts I’ve made in various cancer communities and what I’ve learned. I’m happy to help you get started with that as well, if you ever need it — just message me.
As long as you promise to understand what this blog really is and that it’s not all of me, that is. Hope that makes sense.
Will post updates when I can. Here’s a pic as promised … one interesting thing I hadn’t seen before is the amazing nurse Kellie put brown bags over two of the chemo drips. She told me that was because some of these chemos are light sensitive. Trippy. She also recited from memory what each does and the side effects which impressed the hell out of me. You can see the bags over the IV bags here:
And look, that’s almost a smile! Well sorta, the really smiley pics were just fucking goofy and as you can see I have bed head, hah.
Also that GIANT bag on the right is a 24-hour infusion. That makes your urine red, apparently. Things that it’s amazing to know about BEFORE it happens. So thanks again awesome nurse Kellie!
Also I am not photogenic. In 46 years I have come to accept this. Goofy ears, still a bit overweight (but getting better!) and the signature scowl do not a paparazzi’s wet dream make.
Have a fun week and I’ll be in touch.