Penny’s Blog

Archive for February 2009

Two visits to Gravely Building* today: a follow-up with the oncologist this morning, and the radiology simulation this afternoon.

(*Pronounced GRAV-lee; it’s where the UNC cancer clinics are located until the new cancer hospital opens this August.  In the 1950s, Gravely was a TB sanitarium; in the 1970s-80s it housed the department of family medicine—where I had my first UNC job.)

Dr. Van Deventer, my oncologist, says everything looks fine. My blood counts are normal. He reminded me about the 9-month recovery time, but said I might bounce back a little more quickly than that, since I’ve didn’t become completely inactive these last 4-5 months.  (He said it was “remarkable and commendable” that I’ve continued to work, even part of the time, during treatment.)

We discussed follow-up visits and scans.  I have an appointment to get my port removed week after next.

By the way, based on today’s numbers, it looks like the switch to a plant-based diet is paying off:  I’ve lost about 10 pounds in the last month, and my blood pressure today was down 10-15 points (both systolic and diastolic) from last visit.

The Radiology visit was rather wearing…  I’ll write about that later. (If you want a flavor of what today’s visit was about, go to Google and do an image search on “radiation mask.”)

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If you get up close to this photo you may be able to see what’s sprouting on the top of my head lately—soft and downy, like a fine mist.  (The white stripe on my head in the picture is the reflection of the overhead lights in my still-shiny scalp.)

Watch out! It's the fuzz!

Sweet and sour scalp

(Photo by Baskin Cooper, Renaissance Man.)

Not visible in the photo is the dark stubble remaining from the head-shaving last fall, which was dormant all winter but which has now begun to grow a tiny bit, in prickly contrast to the fuzz. Which hair will prove dominant, the baby-duck down or the thicker stubble? Or will there be a strange combination of both? Or will I rub off all the hair by constantly running my hands over my scalp, which I can’t resist doing lately?

On Tuesday I had a consultation with a radiologist, Dr. Morris, and his physician’s assistant, Ms. Kovak.  As has been the case with other medical staff at the UNC Cancer Center, these guys were thoughtful, communicative, and willing to answer all my questions.   I had gone into the appointment ready to say, “Hah! I reject your barbaric, unnecessary treatment!” but Dr. Morris made a considered and persuasive case for radiation therapy:

  • There isn’t a great deal of research, but one study of Non-Hodgkin patients found that there was significantly less recurrence in patients who got chemo followed by radiation therapy, compared to those who got chemo alone.
  • Dr. Morris proposes using a low enough dose (30 Gray) that there’s no risk of damage to the teeth and gums—so there goes one of my main objections.
  • Dr. Morris  also pointed out that the site of the original lymphoma—my jaw—would make it difficult to notice any potential recurrence.  Worst case scenario, the first sign we’d have that the disease had come back would be that my jaw would fracture.  Therefore, it’s better to err on the side of caution.
  • He said, “If you opted not to get radiation therapy, I wouldn’t be upset, but then I would strongly recommend that you get two more rounds of chemo.”  Ack!  At this point, all you have to do is use the words “more” and “chemo” in the same sentence, and I’m off and running in the other direction.

I thought things over a couple of days, and today made an appointment for the first step, “simulation.” That’s a series of procedures to determine exactly where the beam will be aimed during radiation. Here is a description of the process. They’ll use a mask (as in slide 2) for me, and make marks on the mask rather than on my skin.

We’ll then schedule the radiation treatments—17 sessions, every weekday for 3 1/2 weeks. (A lot of sessions, yes, but each appointment lasts only about 15 minutes.)  The side effects should be temporary:  dry/sore mouth, bad taste, itchy skin and, as treatment progresses and the blood counts go down, that old familiar fatigue.

All the patient education handouts state, “Don’t worry!  Getting radiation therapy will not make you radioactive.” That’s not something that would have occurred to me, but the concern must come up pretty frequently.  So, just in case you were expecting me to glow in the dark*, be advised.  And also know that it’s safe to hug me.

(*which, I must say, could make me a big hit at a party, or on the dance floor.)

One final thing… During our consult, Dr. Morris told me some background I hadn’t heard until now.  When the pathologists analyzed my biopsy from this past September and saw Diffuse Large B-Cell Lymphoma, they also went back and took another look at the very first biopsy I’d had done, in February 2005.  In  ’05 they interpreted the biopsy results as abnormal/atypical but inconclusive. This time, however, the analysts said, “Hmm, yes… In fact, the 2005 biopsy shows intermediate [aggressive] to high grade [very aggressive] B-cell lymphoma.”  Two things about this puzzle me:

  • How can their interpretation of the slides be so different now?
  • If their new interpretation is correct, that means I’ve had an “aggressive” lymphoma since at least late 2004, yet five years later it was still just Stage I.  How did it stay so localized? (Not that I’m complaining, mind you.)

Knowing the answers to those questions, of course, would not make any difference.

More later.  Love and thanks to you all.

Diploma
Yes, I have finished my sixth and last chemotherapy infusion, and am now moving into the next phase of treatment and followup.

Dr. Van Deventer gave me a sheet outlining what’s coming up in the next weeks and months:

  • an appointment with the radiologist to discuss options
  • followup with Dr. Van in 3 weeks
  • a followup PET scan (to make sure there’s nothing coming back)
  • a Panoflex (like a dental x-ray) to make sure the bone loss in my jaw is no worse than it was in September
  • removal of the port

I’ll visit Dr. V for followups every 3 months for a year, then possibly do another scan.  He’ll also talk to me about vaccines around that time.  (I hadn’t heard about vaccines—will have to find out about that.)

The doc said it’s tough to know how often to do scans.  On the plus side, you want to be able to catch any recurrence in the early stages; the earlier a recurrence shows up, the nastier it’s going to be, so early intervention is crucial.   On the minus side, scans themselves expose you to radiation; and also, the fact is that if you scan a body often enough, you’re bound to find something unusual—something that may be perfectly benign.  It’s an important question in managing cancer, but as Dr. Van says, no one will ever fund studies on it because there’s no money in it.

Marion was my companion once again for chemo day, and in the clinic we sat next to a nice couple from Denton, NC.  They’ve been married 45 years.  The wife has been getting chemo for 3 1/2 years, but she was pretty matter-of-fact about it—no self-pity there.

I believe I’m experiencing something like cancer survivor guilt.  Yeah, I had cancer, but it was smooth sailing—people have been incredibly kind to me, I was cured, and I’ve come through these several months relatively unscathed.  During this time, a dear friend of mine has died, other people I know have been newly diagnosed or had recurrences, and the suffering I’ve seen and heard about is wrenching.  It’s not so much that I’m angry at cancer (though I am pretty damn angry)—I’m angry at the human condition.  And I don’t believe that this suffering is God’s plan, or karma, or in any way justified:  It’s just f*cking rotten luck.

So I’m grateful, but also sad, and wishing I knew how to help reduce people’s pain.

The end is in sight: Wednesday will be my last chemo treatment. Thursday will be my last day-after-chemo day, the weekend will be my last can’t-get-off-the-couch weekend, Monday will be my last post-Prednisone-crash day. I feel about it the way I felt about Barack Obama getting sworn in:  I know it’s on the calendar, I’m hopeful and excited—but I’m scared something untoward is going to happen to prevent it, so I’m not allowing myself any unbridled glee.

At the pre-chemo doctor’s visit we’ll probably talk about What Happens Next. Radiation, or just regular followup visits? And now that we’re talking life after chemo, I want statistics: What are my odds of a relapse, or of developing a secondary cancer? (Mind you, I want the statistics only if they’re encouraging.)

I had been telling myself that the doctors would be unlikely to recommend radiation, or that it would be optional. But Friday night I talked with a friend who had Non-Hodgkin’s similar to mine, and in her case, 6 weeks after ending chemo she had to get radiotherapy every weekday for 3 weeks.  She said that radiation treatments are not so bad—visits take just 15-20 minutes, and you don’t feel clobbered afterward the way you do with chemo.  Still, I’m impatient to be a non-patient. I hope the zapping won’t be required.

After chemo #5 I started experiencing stomach problems, and in a moment of clarity was finally able to make the decision to start eating healthier foods.  One sleep-disrupted night at 3:30 I performed a very satisfying kitchen purge. As in the traditional kitchen purge, I pulled out and tossed stuff like the 5-year-old fish sauce, the weird undrinkable herb tea, and the jelly of indeterminate age.  But this time I got rid of edible/fresher foods, too:  Butter, bags of shredded cheese, frozen lasagna and other no-nos were given to the needy (just kidding, Sol).  My friend Susan Neulist has agreed to help me with the transition to a new way of eating.  Susan teaches Food for Life cooking classes, and has been eating a healthy vegan diet for about 15 years—and is just a nice person to spend time with, besides.

It’s hard to talk about philosophies of food without sounding like an evangelist or  militant or  airhead, so I’ll just say if you’re curious about where I’m heading with this and why, you can check out The Cancer Project site—and watch video of educational talks—or The McDougall Program site. Or check out books by John McDougall, T. Colin Campbell, Joel Fuhrman, Michael Anderson (they differ on some specifics but share the same general philosophy).

(Even for those of you who plan to keep your butter and bags of cheese, I recommend checking out the Food for Life class the next time you see it offered in your community—e.g., at Whole Foods.  It’s free, and you get nutrition info, recipes, cooking demonstration, and a meal.)

Enough for now.  I’ll let you know how things go on Wednesday and what the doctor says.



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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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