Penny’s Blog

Updates 1 week and 6 days in

Posted on: November 4, 2008

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).
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2 Responses to "Updates 1 week and 6 days in"

Penny, I’m so proud of you–that doesn’t seem like the right word but that’s the one that’s there. I have great hope for the success of your treatment.

If you need any help with that iPod playlist, let me know. This may be my special calling in helping you get through this.

xo!

Hey Penny,

I loved your comment about when wigs are bad, they are really bad. When Ann Rossi lost her hair, I tried her wig on. She and Ann Stinely could not decide if I looked more like Valerie Bertinelli or Eddie Van Halen. Now that is scary.

Let me know what kind of music you like, Ann and I have tons of great stuff on the ipods. We love the Bill Moyers journal podcasts on PBS.

Thank you for sharing your journey with us. What is your mailing address??
Peace and Blessings,
Jane

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  • 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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