So last week I threw out a "Name that Disease" challenge (see below post). My blood disorder doesn't have a proper name and my complaint was that I'll never get that coveted Lifetime channel "movie disease of the week" without an attractive moniker. Making lemonade outta lemons is what I'm doing here.
But first, we need to name this rogue protein in my blood that is chomping away at my nerve sheaths and leaving damage in its wake. It's resulted in neuropathy in my feet and is slowly working its way up my legs. Not much that can be done about it, other than try to slow its spread with chemo. The "blood thingie" (my working title) is not curable and not terminal, but just, as my doctor shrugged, "A major bummer."
So I said what the heck...let's give this "major bummer" a name.
To date, I haven't seen any viable names for the condition itself, but did receive several attractive titles for my potential Lifetime movie. You did well, Grasshoppers. Here are my favorites so far, categorized by genre.
Sweeping epic: "LORD OF THE VEINS" starring Cate Blanchett and Mark Ruffalo
Comedy: "NUMB & NUMBER" with Tina Fey and Amy Poehler
Romance:"BLOOD STORY" featuring Connie Britton and Hugh Grant
Spy/Thriller: "SYNDROME X" with Kate Winslett and Daniel Craig
Nice job, folks. Keep 'em coming. Because I figure, as long as I'm stuck with this "major bummer," I might as well have a little fun with it, right?
Beats the alternative.
Went into my second round of chemo today with a bit of apprehension after last week's episode. The nurse said reactions are typical the first time out and I'd probably be fine, but I did note that she sat me next to her station, "Just in case."
So I crossed my fingers and nestled in for the long haul, the IV of toxic sludge hooked to my right arm and a stack of books and magazines piled to my left. Not an ideal way to spend a crisp autumn morning, sure. But any doubts I had about treating my blood disorder with something as potent as chemo were laid to rest earlier this week with a reminder of what MGUS is doing to my body.
I was sitting on the sofa,watching one of my favorite shows, Parenthood, when I noted that my feet felt like blocks of ice. Lacking any ready volunteers to heat them with a massage, I rubbed one between my warm hands and realized, with a jolt, that my foot didn't feel a thing. Nothing.
It felt like I was holding someone else's icy foot between my hands.
I've been warned that only one third of people with MGUS respond positively to chemo. But that night, holding "someone else's foot" in my hands, confirmed my decision to proceed with treatment. It's my only hope. If I don't respond, nerves will continue to be destroyed and, well, I'll just cross that bridge when I come to it.
But really, I'm one of the lucky ones. MGUS is not terminal. It's only, as Dr. Bee Gee expressed, "a major drag." As I looked around the chemo ward, I saw people of all ages fighting real life-or-death battles: Shrunken frames, bald heads, and sunken eyes filled with nausea, fatigue and despair. Spouses, partners, families and friends sitting by their sides, holding their hands and hoping for a miracle. While I'm reading Budget Travel magazine and dreaming about my next vacation, these people around me are dreaming about survival.
Puts things in perspective. Because at the end of the day, a numb foot might be a "major drag," but it sure beats the alternative.
Chemotherapy. The very word sounds lethal, conjuring up painful visions of cancer patients suffering through nausea, and hair and weight loss in their fight for survival.
The only treatment known for MGUS, the blood disorder I've been diagnosed with, is chemo. But the good news is that it's a "chemo-lite" called Rituxan. No nausea. No hair loss. The only long-term casualty is my immune system, which will be seriously compromised for at least one year. This means I'll need to avoid air travel, crowds, bubonic plagues, things like that.
So there I sat in the chemo ward as the nurse prepped me about what to expect and things I should do. I may experience flu-like symptoms for a day or two after each treatment. Okeefine. I should drink at least 32 ounces of water to help flush out my system. No problemo. Oh, and speaking of flushing:
"Be sure to flush your toilet twice for the next 48 hours," she told me. "This stuff is bad for your pipes."
Pipes? PIPES? What about my pipes? If she saw the look of horror on my face, she ignored it as she inserted the IV tube and exited stage left. The slow drip had begun.
And it was fine for the first four hours. When my best friend, Pam, learned I was planning on doing the treatment alone, she took the day off work and insisted on accompanying me. Yeah, she's that kind of friend. I hadn't wanted to bother anyone, but found myself grateful for her company. We were discussing diets, men, work, fashion, flipping through store catalogues and stuff like that. We might have been enjoying a conversation over an espresso at Starbucks, if not for that bag dripping the toxic sludge into my arm. Then the nurse came by.
"Just 15 minutes left," she chirped. "You're doing great." Hey, I was!
Her words were still floating through the air when I felt a back ache developing. Probably from sitting in the recliner-type chair for so long, I figured. So I stood up and stretched, and noticed the ache was extending down my legs and up my torso. Then I started to shiver, first a little, then a lot.
Ruh roh, Scooby Doo. Something wasn't right.
Can you get the nurse? " I asked Pam and sat back down. Suddenly my entire body started shaking uncontrollably, like Lindsey Lohan in front of a judge. When a nurse tried taking my temperature, she couldn't find one. Another took my blood pressure, which had dropped to 80/50. I started worrying I might see that infamous "bright light" as a flock of nurses rushed to my side. They heaped heated blankets on me, yanked out the IV and began flushing my veins with a saline solution to cleanse the chemo while pumping me with drugs to counteract the reaction.
Me? I semi-conked out.
And when I awoke a short while later, all was dippity-do-dah-dandy. The shaking had stopped, my temperature was normal, and the chemo was resumed to completion. Almost six hours later, I was done.
Until the next round, that is. Every Friday for three more weeks. It'll be fine. Really.
Let's just hope I can say the same for my toilet.
