One year ago, at this very moment, I was sitting through my first chemotherapy treatment. I can honestly say it does NOT feel like just yesterday. This has been a very long year. I never really entertained the thought that I wouldn’t be alive today, though. My cancer is “highly treatable,” as Dr. O put it during my first appointment, so as afraid as I was that first day, I figured Dr. O knew of what she spoke, and there was no reason for me to think of my diagnosis as a death sentence.
For the very vain, though, or even for those who occasionally look in a mirror, the hair loss was pretty close to a death sentence. It’s not just the head hair disappearing that gave me grief; losing my eye hair was what made me look like a freak. As Jack put it, “you look like an alien but you’re not green.” Friends, this is why we don’t rely on 8-year-old boys for boosts of self-esteem.
Few people saw me Kojak-bald. My head was covered at all times, even at home, even when I slept. I was sure that Victor would find my baldness hideous, so on the rare occasion that he saw me uncovered—usually right after a shower or when changing my scarf—I apologized. He thought that was silly, and he promised that he was fine with my baldness. Still, when you’re used to seeing your spouse with a full, thick head of hair, it has to be weird. I continued to keep my head covered.
It was May when I was first bald in public. I saw Michelle, my fab stylist, to have my makeup done and to be given temporary eye hair. People went in and out of the studio as I was being made up, and I felt incredibly naked. When Michelle finished, I put a loose scarf over my head and went to Laurelhurst Park for a photo shoot. I took the scarf off and felt a bit less naked than I had in the salon, but only because a bald woman at Laurelhurst Park is no biggie. Why did I have pictures taken? Because while I would love to forget most things about this year, the fact is that this experience has changed me dramatically, and it seemed important to mark this time in my life. I hope that someday I’ll look back on those photos, with my great-grandchildren at my feet, and marvel at how cancer was a tiny little blip on the radar screen of my life.
There were ups and downs along the way. The “ups” were tremendous, and I truly credit the people who brought them for keeping me going on some of my extra-difficult days. I mentioned many of them here. One of the nicest surprises of the past year was getting acquainted with author Pamela Ribon, who happened to read the review of her book on my blog and offered to send me her other books. I met her in person at a reading/signing in June. It was a total geek-fest for me—I’m such a book nerd. I had visits from friends who live far away. People went out of their way to see me, to connect, to offer me their best wishes. Such goodness in that. In the past year I’ve also made some new and delightful friends that are “forever” types. Pure happiness!
The “downs” I faced were fewer, but when they came, they absolutely knocked me on my ass. A guy I’d become familiar with through his wife’s blog, who had the same type of cancer as mine, received a poster his Internet friends had made—they were all giving cancer “the bird,” and I fell in love with the idea. I decided my motivational poster would be of my friends pole-dancing—Kim F’n had started the whole IV pole-dancing craze and I was determined it could, and should, live on. For months, I received photos of friends wrapped around pole-like objects, and I LOVE them! (I’m still collecting the photos, BTW… I’ve got 53, but not enough to do a poster justice yet. Send me more!)
I know the flipping-off-cancer story sounds like an “up,” but it’s not. The guy had a recurrence of his lymphoma just months after being told he was in remission. It sucked. He died, and that sucked even more.
A few months later, Loveliest Lori had a medical emergency of epic proportions. It was scary, and seemed like forever before we were sure she’d live through it. The experience was life-altering for everyone who loves her.
Some of the downs weren’t as big a deal as those. For instance, as my hair began to grow in, a bad case of dandruff came with it. Not cool. My post-chemo aches and pains kept me in bed for several days. My veins got worn out from the infusions and the nurses started having an extra-tough time getting my IV started before every treatment. I lost a lot of sensation in my left hand; my rheumatologist recommended a (painless) steroid shot in the base of my thumb. Dr. O said the numbness had nothing to do with chemo but it was so obvious it had EVERYTHING to do with chemo, so I asked to get a port to avoid being poked two or three times every session. I had the port placement surgery—a relatively easy procedure and recovery, but oddly painful too. Add these things to the fatigue, weakened immune system, chemo brain, and all the other typical side effects of chemo drugs, and you’ve got a girl that gets grouchy more than once in a while.
On the bright side, there were very few surprises during the first six months of my cancer treatment. This was a good thing, a sign that everything was progressing as it should. I was initially told I would have 6-8 CHOP-R treatments, and my hopeful heart set its sights on six. My heart is a wishful thinking dummy. After scanning my tumor site, Dr. O ordered two more treatments. Bummer. Once #8 was over, though, I was excited to be DONE, until I realized that I would be doing follow-up/maintenance treatments for six months and they were just as frequent and took as long as the original treatments. The only big difference was the “H” was no longer part of my regimen. The “H” stands for Adriamycin (I know, I don’t get it either), and is that evil red stuff that made all my eye hair fall out.
Without the Adriamycin my hair began to grow back, and on October 4, I finally went “topless.” Even though I totally looked like a boy with a lot of grey hair, it made me feel like a human to go out without a scarf or hat—not a very attractive human, but a human nonetheless. I have taken to wearing earrings almost constantly—they help me look more like a girl human—and lipstick and eye makeup when I remember.
The follow-up/maintenance chemotherapy regimen I’ve been on since mid-May is supposed to end on December 14. I would love to make that chemo session a big ol’ party, with cake and balloons and friends and happy happy happy things. I’m too afraid to celebrate much, though, because I’ve been disappointed by false endings before. Who knows yet what kind of follow-up I’ll have to do for the next couple years? It could be Adriamycin every three weeks. I don’t know when I’ll see the last of the chemo nurses, but I doubt it’ll be on December 14.
The thing is, if my doctor tells me I’m officially in remission, then I should celebrate, RIGHT? Maybe I should celebrate the milestones instead of waiting for the ding-ding-ding! GRAND FINALE ding-ding-ding! of my cancer experience, which may not happen for a long, long time. Celebrating milestones will allow me to eat a lot more cake.
I like cake.