My life is playing out on Brothers & Sisters. For those of you who don’t watch, Kitty (Calista Flockhart) a high powered politico was diagnosed with cancer about 5 episodes ago. They admirably avoided the “very special episode” crap and have dealt with issues of treatment, family and the internal mental game with particularly eerie insight. Someone on the writing staff must surely be a survivor or a close caregiver. Anyhoo, I was particularly happy and freaked out to watch the latest episode where Kitty chooses to shave her head and go the wig route. She has a remarkable moment where she just stares at herself and her hair in the mirror, as if taking one last look at her “normal” self before buzzing her noggin. I feel like I have that moment every morning. Despite my “the Donald” do, I’m too chicken shit to shave my head and move on.
For a while, she contemplates stopping treatment. (We’ve all been there.) Her family is incredulous. Only then does she let the “brave patient” facade drop and truly confess the strains of side effects to her Mother. Mom is embarrassed and sad to learn she had no real idea of what her daughter was suffering, despite sharing a home with her. I realized that I can also be guilty of an overly sunny report to my loved ones. I firmly believe a positive outlook is crucial to healing, but I could probably stand to be a bit more honest about the downside as well. How else do folks know how and when to help?
I also realize that lots of folks read my blog for some sense of commeradarie in the travails of treatment. Maybe a peek at what to expect from a similar regimen can eliminate some of the fear of the unknown rather than depress someone about what’s to come?
So, here’s my current line up of side effects. I list and detail these not to complain, but just to share and let people in a bit on my day to day.
To begin: I’m on a regimen of Folfuri every two weeks. That’s a drip of irinotecan, leukovorin, and avastin followed by 40 hours of 5FU on a portable pump. Overall, its way less awful for me than Folfox which involved oxiliplatin. Oxiliplatin is Satan Juice.
Schnoz: Every time I blow my nose, there’s blood involved. Sometimes a little, sometimes a minor nose bleed that stops quickly. Odd, but not a big deal.
Hair: Its thinning and thinning and thinning some more. I risk a sunburned scalp if I go out without a scarf, hat or my fab new wig. And its thinning everywhere. Lets just say….free Brazilian.
Mouth: Oh the mouth sores. These internal canker sore-type things are truly sucky. I had a couple on my tongue that brushed the sharp edges of my teeth whenever I spoke or ate. Ow. They make it hard to eat in terms of pain and a general oogie feeling that hangs around. And the medicated mouth rinse might actually be ickier than the sores themselves. Imagine BenGay in your mouth. Very weird.
Throat: For about two days in each cycle, I feel like I have 2 big lumps in my upper throat area. It makes it hard to swallow and I have to really really chew everything I eat. Major gulping of beverages as well. My doc admits to being “stumped” on this one. Alrighty then…good thing it always fades away.
Skin: Here’s a freaky one. My palms and the bottom of my feet peel as if recovering from a nasty sunburn. Sometimes it peels to a deep layer and my poor tootsies are red and raw-ish. Moisturizer definitely helps.
I’m also getting very sensitive around the area surrounding my port. I have major owies where the repeated use of tape has pulled away my skin. I’m totally putting my foot down tomorrow and making the nurses find a solution to this. I’m not putting tape on scabs. Duh.
I also used to get tiny pimples on the right side of my face and neck on the day after treatment. It seems the culprit was Decadron, the steriod that I get in my pre-meds. I asked doc to eliminate this from my druggy cocktail and the zits promptly cleared up. #nozitsatfortyWIN
Armpits: This one is fun. While I am free of hair in the pit department, I have developed zits in the region. I learned that it is not uncommon to develop small cysts in the area, but luckily I don’t have any. Just armpit pimples. Yay.
Belly: I’ve lost all muscle strength in my torso, so extended walking or standing can leave me a bit achy or sore. As far as nausea goes, mine is pretty well controlled by drugs. I feel most queasy on my last day of the pump and the day after, but it doesn’t interfere with my diet much. Lately though, I’m getting slightly queasy on days later in my cycle. Probably to be expected after 10 bouts with this chemo cocktail, but I plan to ask doc about this too.
Butt: Hemorrhoids, anal fissures, constipation, diarrhea, rectal bleeding – you name an ailment of the ass, I’ve had it. I’ve learned to alter my diet a bit in different phases in my cycle, but ultimately I have a regular battle with irregularity. Usually some Immodium, Tucks and a soak in the tub will clear up the issue. However, I have had 3-4 episodes of blinding, sweating, cringing pain over the period of an hour or more on the throne. Those days have been the worst in my entire experience of treatment. I’ve been planning a blog specifically dedicated to these horrific scenes, but its just so damn embarrassing I keep putting it off. This coming from a gal who has detailed the day she crapped her pants. Trust me. Its ugly.
Overall fatigue: This is a biggy. On day two of my chemo, I pretty much just sleep all day. I’ve come to accept this for the most part, but it freaks my husband out. Seriously, I’m awake 4 hours max. Its very disorienting and freaky. I also have a hard time falling asleep – mostly I just can’t get my brain to shut off. A groovy drug called Ativan helps a bunch, but my hours are still irregular and hard to manage. Most days, I need a short nap. Some days, I just can’t seem to wake up at all. This takes a progressive toll on me and I see this as my biggest challenge long term. I have a feeling exercise is key, but the ass groove in my couch isn’t shrinking.
Brain: Here’s where the real stamina is required. Yes, all of these side effects are uncomfortable but they are by no means unbearable. (Except, of course, the occasional hour long butt battle.) Everyday, I try to push myself to do at least one thing I don’t feel like doing. Sometimes its just moving from the bed to the couch, but its something. I need to add some exercise to my routine at this point, but I’m not having much luck. Hopefully I’ll have the motivation and discipline soon. Right now, I’m a mostly unapologetic lard ass.
Well….uh…there ya go.
How am I feeling? Now ya know.
But please know, none of this is too much for this Tumor Assassin. As long as I can down the occasional Bourbon; I’m good.