Penny’s Blog

Archive for October 2008

Good news today:

The jaw pain is gone. Consciously relaxing my face and shoulders has been amazingly helpful… as has been a wonderful massage by Virginia at Intrinsic Touch. (I highly recommend her: http://www.itmassagetherapy.com)

I survived the post-steroid crash. Yep, it was rough. Next cycle, on no-steroid day a trusted assistant will come over and lock me in a cage like a werewolf at full moon, so that the world will be safe from me until the bad feelings pass.

Bummer news today:

I ran out of shampoo this morning, but I haven’t gone bald yet. *sigh* You just know that if I go spend $3 for a new bottle of shampoo, the minute I get home with it every hair is going to sproing off of my scalp, the way the wheels sproinged off the sabotaged car in The Great Race. So I guess I’ll be fumbling around in cabinets for leftover hotel-bottle shampoos.

Embarrassment of riches:

I am overwhelmed with good wishes. I am also, unfortunately, overwhelmed with food. Y’all are right–I don’t feel like cooking–but right now I don’t feel like eating much, either. Things are still on standby about a sign-up-for-meals calendar. Please: For now, no food.

To tell the truth, I’ve never had any problem keeping my body fed, but I have always appreciated help keeping my spirits up. Let me suggest some non-food ways you can show your support:

  • Send me mail. A postcard, a card, a note, a bizarre newspaper clipping, an anonymous ransom note.
  • Make me a mix CD or a copy (legal, of course) of one of your favorite CDs.
  • Can’t go wrong with flowers (nothing with a strong scent, please).
  • Get me a kid’s craft kit, colored markers, clay, origami paper–you know, art therapy.
  • Do something nice for someone else and tell me about it.
  • Come over and take a 15-minute walk with me.
  • Lend me a DVD or videotape, or e-mail me some good YouTube or Web links.
  • Give some attention to my cat… if the weather’s mild, maybe she’ll let you take her for a walk.
  • Help me move all the boxes of clutter into Kirby’s room (sorry, Kirby!) so they aren’t cluttering up the downstairs.
  • Any other ideas? Anything indulgent?

As always, thank you to everyone who’s helped, offered to help, called or e-mailed, and listened to me vent. Hey–day after tomorrow is wig-shopping day! I’ll let you know how it goes.

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I’m very curious about how this week is going to work chemo-wise:

  • After taking steroids for 5 days, today’s the day I stop taking them. I’ve heard all kinds of things about what happens when the body stops getting its dose of Prednisone: “That’s the day you don’t get out of bed,” “You’ll just cry all day,” “You’ll want to bite someone’s head off,” and “It’s really no big deal.”
  • Mid- to late week is when my blood cell counts are at their lowest in the cycle, and I’m supposed to avoid being exposed to anyone sick, and stay away from crowds. This is the one bad thing about going through chemo in the fall and winter–there are lots of people dripping and sneezing and coughing out there already. I’m taking a bottle of Purell to work with me today.
  • And I’ve developed a weird side effect, I think from the Vincristine component of the chemo: Spasmy pain at my jaw joints. It’s not killer pain, but it just feels like someone’s pulled the tendons tight on my face, or like I’ve tasted something very sour and my jaw has contracted.

But otherwise… so far, so good. I’m happy to report that I haven’t yet barfed a single time, and that I generally feel okay, so long as I don’t overtire myself. I’m spending more time on the phone lately, and am rediscovering that I actually like talking to people.

My friend Marion has offered to organize a food-bringing, cat-walking, etc. volunteer calendar, so I’ll let you know when that’s up and going.  (She’s just getting back from out of town, so it may be a few days.)  Thanks for all the offers of help!

The Unhappy Bears series

The Unhappy Bears series

When Kirby was cleaning her room at Sol’s in preparation for heading off to college, she unearthed a 10-year-old supply of fuse beads and bead boards. There are plastic pegboards in a variety of shapes; you put the colored beads on the pegs; and an adult puts non-stick paper over the beads and fuses them together with a hot iron.

Fig. 1

Fig. 1

Squarez

Squarez

If you’ve never tried this craft, I recommend it. It’s fairly mindless, it’s good for your manual dexterity, the limits of colors and peg arrangements are challenging, and there’s an element of risk to it—if your hand shakes or the cat head-butts you, the beads go flying off and you have to start over.

The Star of David series

The Star of David series

Anyway, the reason I bring this up is that during the period between the surgery to take a bone sample (“There is something obviously wrong”) and the diagnosis (“Lymphoma. We’re referring you to the Cancer Center”), I used up almost all the beads making little designs.

Heartz

Heartz

It helped keep me sane. Here’s a gallery of some of my creations.

Circlez

Circlez

So yesterday was the first chemo day, or the first “infusion” day, as they call it. My friend Marion drove me to my appointment and spent half the day with me, though eventually I felt bad for her because there wasn’t much for her to do except sit around in uncomfortable chairs and eavesdrop on other people’s conversations.

First off, I met with my docs to get the results of my scans and tests. The MUGA scan (to check for a heart abnormality) was fine. The CT scan was essentially clean—there were a couple of small (<1cm) nodes elsewhere in my body, but they’d been there on the 2005 scans, too, so they don’t count. Initial analysis of the blood marrow looks good, too. So this is appears to be a localized thing. The plan is to do two rounds of chemo and then do a PET scan. Depending on the results of that, and on how well my body is tolerating the chemo, we could continue with the chemo or decide to do radiation.

After this talk, Marion and I went up to the 3rd floor to Infusion. It’s a busy floor, with as many as 90 people receiving infusions at any given time. One of the wings consists of semi-private rooms—two patient chairs per room; another is more of a concourse, a big room with chemo niches encircling a nurses’ station. First you get your pre-meds, in pill form: In this case, my first dose of Prednisone, some Tylenol, Benadryl, and an anti-nausea pill. Half an hour later they hook up your drug bag and start it a-drippin’. Since I have my Bard Power-Port (c) installed in my chest, the IV line got stuck right in there. The drips are managed by a computerized pump and can be slowed or speeded as normal. I was told to allow 8 hours this first day.

We’d been warned that the monoclonal antibody, Rituximab, could cause allergic reactions in some patients because it’s derived from mouse DNA and is “not quite human.” Sure enough, a couple of hours into the drip, I started itching and breaking out in blotches from my scalp down to my neck and chest. They paused the drip, dripped in some more Benadryl, the blotches disappeared, and we continued. The Benadryl and everything else made me so drowsy that I never picked up the knitting, paperwork, or reading I’d brought with me. My coworkers Leslie and Mark came to visit, and Mark hiked out to get me a Chik-Fil-A lunch (good man!), then I was dozey most of the rest of my time there.

I enjoyed chatting with the nurses and the other chemo patients. People are there for treatment of lots of different conditions, and all have their own treatment regimens and side effects and stories. Robin, my nurse, talked about having shaved her head for charity and what it was like going around as a bald person. Reminder to self to start scoping out wigs and hats this weekend.

Taking it easy today, dozing off and on, and hope to be back at work tomorrow. I’m tired, and have some weird tastes in my mouth, and a rumbly gut, but otherwise am doing okay. The cat is happy to have an all-day pass to a warm lap.

Thank you to everyone for your love and support.

I’m pretty psyched that I finally have a reason, a theme, an excuse for a blog.  I got diagnosed with lymphoma this month, and it’s the most interesting conversation-starter that’s been thrown my way in a while.  (It’s also a welcome distraction from election season.)  Rather than flooding people’s mailboxes with all the excruciating details of my treatment, I’ll post info here and people can check it out if they want.

So… the official diagnosis is “Non-Hodgkin lymphoma, diffuse large B-cell type, with c-myc translocation.”  There’s been something suspicious on my gums for about 4 years now… the gums were biopsied, lymphoma was suspected, and I actually got worked up at the UNC Cancer Center in 2005.  But there was no conclusive diagnosis.  The condition didn’t grow enough to announce itself until this September.  At a regular checkup the dentist noticed some bone loss on my x-rays, the surgeon and pathologist did a biopsy of jaw bone, and here we are.

Treatment starts tomorrow:  Chemo on the R-CHOP regimen, once every 3 weeks for 6 rounds.   R-CHOP is a combination of Rimuxitab (a monoclonal antibody that zeroes in on evil lymphocytes), Cytoxan (cancer-killer), HO (other nasty toxic stuff), and Prednisone (a steroid).  The medical team will give me all sorts of drugs to counteract the bad side effects of chemo, but we can still expect that I’ll start losing my hair in a week or two, that I will feel tired, and that there are days I’ll need to avoid crowds because my immune system will be languishing.

Thanks to all of you who’ve offered support.  I have a fantastic network of friends, relatives, co-workers, and medical staff.  If I wanted, I probably could have people holding my hand, doing my shopping, walking my cat, and making me casseroles 24 hours a day.

Much more detail to come.



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  • 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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