Penny’s Blog

Archive for November 2008

Hey, folks-

My hair started falling out 2 weeks after my first chemo. Today marks 2 weeks since my second chemo and, sure enough, more hair follicles have started giving up the ghost. The next area of suspense is whether the eyebrows and eyelashes will still be there a week from now.

Two weeks ago I got my head shaved, and within an hour or two I felt a sense of relief. I decided that day that I didn’t want to spend the next few months trying to disguise the fact that I was bald. (I wear hats as needed for warmth and comfort, but the wig is still sitting on the wig stand, and not once have I artfully tied a scarf around my head.) This has made life infinitely easier for me. As Alyson said in a recent comment, it’s everyone else who bears the burden of looking at me.

Yes, showering in the morning is quicker with no hair to wash. Putting on makeup, however, actually takes longer, because my “face” now extends to the back of my head.

Next Wednesday (12/3) will be Chemo #3. Before the infusion, I’ll be getting a PET scan so the docs can assess how well the treatment has been working. I wouldn’t be surprised if they see no cancer activity at all. (Unfortunately, even if that proves to be the case I don’t get a “get out of chemotherapy free” card.)

I’ve been feeling great the last few days, and am looking forward to a happy, non-queasy Thanksgiving holiday. Wishing the same for all of you!

The message is finally sinking in this past week or so: I need to lower my expectations for myself between now and March. People told me, and now I’m appreciating, that even the most trivial activities and plans of my regularly-scheduled life will just have to be put on hold until chemo season is over. No new projects will be launched, no stacks of books read, no quilts made, no awards for “Most Chipper Cancer Patient” earned. At the most basic level my body is just a host for the chemotherapy process, and the goal is to survive it.

This became pretty clear during the last bunch of “down” days. My earlier expectation about the treatment cycle was that on my “down” days I’d take it easy—do a little reading, drink some tea, write a letter, maybe get some knitting done… cozy as a Mary Engelbreit greeting card, the homey kinds of things you’d do on a snowed-in day. It’s been hard to let go of that fantasy. The fact is, on my “down” days I do just about nothing. There’s nothing cute and cozy about this kind of day… it’s queasy and flat and dull, visited by a sense of impending doom… a day not to be enjoyed, just tolerated until bedtime.

And then one day I wake up, and the morning’s tentative “?” is answered with a “!”—it’s an “up” day. I’m perfectly fine, as if yesterday had just been a bad dream. I look healthy (only the stubbly pate gives me away) and feel cheerful. I go to work. The brain functions. Food is digested. Humor is appreciated. I sense possibility and potential ahead. I have to ration my energy a bit, don’t accomplish anything superhuman, but that’s okay. I’m happy.

The trick is to see the “up” days not as an expected norm, but a groovy bonus. I figure there’ll be at least 7 of those days during each 3-week cycle, and I’m going to try to appreciate the hell out of them.

As for the other days, I’m just going to get through ’em and X them out on the calendar. Accumulate enough Xs, and it’ll be spring. That’s what I’m aiming for.

When I visited my mom last weekend, I told her I’d be honest with her about how I was feeling during all this. I told her that I’d write at least one time when I was feeling bad so that she’d know I wasn’t sugarcoating things. So here it is: I did not want to leave the house this morning.

Mainly, it was the hair thing. Between yesterday evening and this morning, the hair-loss experience crossed the line from “Ha ha, this is bizarre,” to “Oh my god, I look awful.” I pulled out a substantial amount of loose hair last night (while watching The Sound of Music on DVD). Then I looked in the mirror and almost cried at the newly-exposed expanse of scalp. Every spot, wrinkle, line, extra chin is emphasized when there’s no hairdo to distract the eye. I can’t do anything about my face, but I can get rid of the weird hair arrangement that’s left. I have an appointment at Moshi Moshi tomorrow to get the remaining hair buzzed off. (The show starts at noon—come on down!)

Goodbye, pride. And goodbye, hair. See you in the spring.

And even though I had a better idea this time about what to expect, I was anxious this morning about going in for today’s chemo infusion. Edgy. Afraid of feeling sick. That’s probably just how it’s going to be on these mornings. Everything went fine, of course. Still, I was glad to get out of there at 5:30 and breathe some fresh air.

Although I haven’t gotten sick, I do get passing twinges—of a metallic taste in my mouth, or discomfort, or not-quite-nausea. Whenever I get a twinge, I think “Tour bus going by.” Some people visualize their chemo drugs as sharks, ferociously gobbling up their cancer cells. I visualize each twinge as a little tour bus in my blood stream, filled with clueless tourists. The tourists—cancer cells—naively think they’re getting driven to see some Mayan ruin or something. What they don’t realize, until it’s too late, is that the only place they’re going is on a one-way trip out of my body by way of the urethra*.

*I never thought I’d be mentioning my urethra in a public forum. I guess there’s a first time for everything.

*P.S. Also, both the shark and the tour bus visualizations are inaccurate. As I understand it, chemo doesn’t actually kill cancer cells; it keeps them from reproducing, so they die of old age without leaving any heirs. But any analogies or visualizations I can think of involving involuntary sterilization are just too depressing to pursue. I’ll stick with the tour bus.

“Wow, you’ve got a lot of hair,” hairdressers have been telling me my whole life. And seeing all the hair I shed—on the floor, on my clothes, in the trash, on the couch, in the bathtub drain—I’m amazed there’s still any on my head. The slightest tug on a lock of hair and it comes out. I “trimmed” the hair at the back of my neck yesterday simply by pulling it out, tuft by tuft. I brushed and brushed my hair before showering this morning, but handfuls more came out during the shampooing. There’s always more hair coming loose. It’s like Bartholomew Cubbins’ hats.

And I realize I’m harping on the hair thing, and that most of you probably don’t find this half as fascinating as I do. It’s just so very odd. And I’ve been thinking lately that going through chemotherapy has some things in common with being pregnant:

  • Your body changes in weird ways. Even if you’ve been told what to expect, it can still freak you out when the changes happen to you. You’re wary and curious before you even get out of bed in the morning, wondering what today’s symptoms will be.
  • Your condition is constantly on your mind. Riding on the bus, or walking down the street, you’re thinking, “I’ve got cancer [I’m pregnant].” Having a conversation with someone, you’re thinking, “cancer cancer cancer”; when a cashier is nice to you, you think, “Oh, I’m touched at her kindness to me while I’ve got cancer”; if someone tailgates you, you think, “You idiot, don’t you know I’ve got cancer?”
  • You lose that sense of your body as your own private property. Medical professionals are scanning and sticking and examining you on a regular basis to see what’s going on inside. People who know you are constantly checking you out to see what’s new (bigger belly? bald head?), and when you start to “show” (bigger belly or bald head), it’s impossible to blend into the background, even among strangers.
  • People offer sympathy and advice, and share their own experiences and war stories. You learn to appreciate the sympathy, take the advice with a grain of salt, and not let the scarier war stories upset you.
  • And your friends go out of their way to do nice things for you. Thank you, everyone, for your e-mails, comments, links, cards, music, and other generosities. They brighten my mood in a big way.

Last night I broke down and bought a bottle of shampoo.  This morning my hair started falling out.  No lie.

Last Friday my friend Trenna and I went to the UNC cancer center’s Patient Resource Center, which totally rocks. We left there with a wig, some wig shampoo (who knew there was such a thing?), a wig-holder-frame thing, a sleep cap (kind of like the cap they put on newborn babies, but 10 times larger), brochures on wig care and scarf-tying for baldies, and a tote bag—all free. Wig selection was easier than I thought, because when a wig is the wrong color or style for you, it looks really, really wrong. Haven’t lost my hair yet (probably because I didn’t go out and buy shampoo), and the suspense is killing me.

All the Hey! You’ve Got Cancer! patient ed materials tell you things you can expect during chemo, and I am surprised to discover that some of those things actually apply to me. It’s mainly the energy thing. I’m at the lowest-blood-counts part of the cycle, and yeah—I really do get tired easily! And when I’m tired, it’s not like the usual tired—you know, “Ah, I think I’ll sit down and read a comic book.” With this kind of tired, the brain is tired, too, and I have no interest in anything. Even watching a video requires more focus than I can muster. There’s nothing to be done but to sleep. Even on my tiredest days I have a few good hours in me, but I’m learning to ration my energy.

One interesting thing last week was that I met with Dr. Coley, the psychiatrist who’s been managing my antidepressant meds for a few years. He said that there’s some research to suggest that when there’s a malignant or inflammatory process going on in the body, it can negatively affect emotions and behavior (even before the illness is diagnosed). He said that since this lymphoma process has been in my body for 4 years, when it’s cured I may find that I feel better than I have in years. My hunch is that he’s right. I’m not enough of a scientist to be able even to Google this intelligently, but I believe a keyword is cytokines.

Coming up in the next several days:

  • A visit to the hospital department that installed my port, so they can trim down some threads—there are little bits of suture thread sticking out of the incision from inside my chest, which is kind of freaky when you think about it.
  • A nutrition consult (free at the aforesaid rockin’ Patient Resource Center), so the nutritionist can tell me whether I should eat whatever I damn well please during chemo, or clean up my dietary act pronto.
  • A trip to Virginia to visit my mother. I hope she’ll be reassured to see that I look healthy. I’ve been telling her so, but probably suspects that I’m putting up a brave front while quietly wasting away.
  • Start thinking about what to load on my iPod for the next chemo infusion (Nov. 12).


  • None
  • dswope: I just happened by after my I received an email from a close colegue that he was headig for IVPalooza. All I knew was that it was a form of chemo.
  • Brian: Hi Penny; When I was diagnosed with non-Hodgkin lymphoma I found your site. Reading about what you went through was incredibly helpful to me. Tha
  • Tricia: Still here; still caring; still rooting you on!

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