Penny’s Blog

I don’t think anyone’s still reading at this point… but there have been some things I wanted to post, even if only for my own benefit:

  • Sent to me by my sister Alyson: Cancer is a disease. A nice response to the popular notion that if you got cancer, you brought it on yourself through your own negative thinking.  On behalf of the truly noble and positive people who’ve had incurable cancer:  Up yours, Deepak Chopra, and Go to hell, Louise Hay.
  • Dana Jennings, the New York Times writer I’ve cited here before, is over his cancer (hooray!). Now he’s writing about recovery, and again, I can relate. Healing Physically, Yet Still Not Whole

And I need to confess a strange thing that happened to me this month. I started getting reminders, by mail and by phone, that I need to schedule a follow-up visit with my oncologist. And I seriously considered not doing it.
Remember my posts about how I loved the chemo nurses, the lady who took my blood pressure, etc.? That is gone. I don’t want to go back to the cancer center.

I don’t want any more blood tests or x-rays; I don’t want to get asked if I’m feeling any numbness or tingling in my extremities; I don’t want my lymph nodes palpated; I don’t want to get the medical record card out of my wallet and hand it to the receptionist. That was so tiring, and now  I”m so very comfortable. Let’s just forget this stuff ever happened.

The me getting chemo and radiation felt about 90 years old.  The post-treatment me is about two.  I don’t wanna, I don’t wanna, I don’t wanna.

I feel fine. I’m sure (don’t ask me how) that I don’t have any cancer. In fact, I like to think that my chemo treatments have killed every malevolent thing in my body, so I no longer need to get Pap tests or mammograms or maybe even dental care. Besides, if I never go back to the doctor, I’ll never be sick.

At the next followup I’m scheduled to get a Shingles vaccine.  That was the main thing that allowed me to get past the denial and make an appointment. Even the two-year-old me knows that shingles really hurts, and hurting is bad.

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I visited the spanking-new NC Cancer Hospital this week for a follow-up appointment.

What a contrast to the old Gravely Building. The patient waiting area is huge—you could drive an 18-wheeler through there—but less friendly and homey, now that the forced knee-to-knee intimacy of the old waiting room is gone. The bathrooms were far enough away that I almost got lost going back to the waiting area.  The blood-drawing lab at the old building squeezed two technicians and patients into a space about the size of a walk-in closet; now it’s a stroll from one end of their area to the other. Interestingly, the examining rooms aren’t too much bigger than the old ones. And, according to Dr. Van Deventer, the doctor’s work areas are smallest of all—which, he says, reflects the lower status of physicians these days.

I loved the floor-to-ceiling windows and the comfy chairs, but overall, the spacious, echoey environment made me feel isolated and disconnected. One of my favorite things about having cancer was getting to talk with other patients and their families—in the waiting room, hanging in the hall outside the bathrooms, getting (or waiting for) chemotherapy. This visit, the only other patients I saw were barely within shouting distance.

(I’m curious about the new chemo facilities, but at the same time, I hope I never have occasion to see them.)

Anyway, the bloodwork was all normal, Dr. Van commented on my unusually fast recovery, and everything’s peachy. I got three immunizations (flu, pneumonia, and D-PAT). In six months I’ll get fresh x-rays of my mouth, followup bloodwork, and that shingles vaccine they’ve been promising me.

And that, really, feels like that.

It was a year ago that the dentists noticed the shadow on the X-ray and decided to do a jaw biopsy.  Now things have come full circle.  I no longer have to ask myself whether I’ve reached “normal” yet: I know without a doubt that I’m fully recovered.   Cancer, recovery, readjustment have rapidly receded in importance, even compared to a month ago.  So I’m moving on.

Thank you, all of you who’ve cared enough to read this blog. Writing it has been tremendously therapeutic for me.  I continue to be grateful for the support, concern, and love people kept giving me over the past year, even when I tried to deflect it. If there’s ever anything I can do for you, please ask.

Here it is, a sample of the curly, grey/blonde/colorless crop of hair that has appeared in the past couple of months. On an average day I will receive 5-10 comments-compliments about my hair, and .5 people will ask to touch it.

It's a-growin'

photo by HRH Amy K. King

There are a lot of happy, perky feelings these days. It’s good to have hair, and to have energy to participate in daily life. The hospital bills arrive less frequently.  It’s been months since I smelled rubbing alcohol or heard the click of a chemo pump. The scars are flattening and fading.

But—please don’t hate me for this—adjusting to post-treatment life brings a lot of challenges.

For example, there’s the freakin’ menopause, one of chemotherapy’s “gifts that keep on giving.” Its effects are inescapable and annoying. Hot flashes. Moodiness. Insomnia. More and more moments when the mind goes blank and words evaporate. And a lack of confidence in myself, wondering: “Do I sound as stupid as I feel right now?” My skin is weird, and my body shape is changing. It’s like adolescence, but with hot flashes instead of horniness.

Then there’s the continuing struggle to remember what “normal” felt like B.C. (Before Cancer), and to discern which unusual physical/emotional happenings are worth noticing and where they originate.

Example: My joints have been hurting for months. Sore ankles, knees, hips… Is it because I’m getting old? Exercising too much? Exercising too little? Was I this achy B.C.? Is this just my imagination? After a few months I decide it’s not my imagination and I didn’t feel this way B.C. So now I start Googling “joint pain chemotherapy” and “joint pain menopause,” and before long I’m obsessing about omega-3 supplements. Then the next day my joints don’t hurt, and I think, “Maybe it was just a passing thing.”

And I find myself probing for “brush with death”-induced insights, which (1) I decided months ago I wasn’t gonna have, and (2) is a pretty risky pursuit when one’s hormones are in flux. It’s tempting to draw mistaken conclusions.

  • I’m edgy and stressed at work today:  Maybe this a sign that I need to quit my job and move to a farm in Iowa!
  • I don’t feel like going out this weekend: I’m spiraling into a depression from which I’ll never recover!
  • I had a pretty good day today: I’ve settled into a comfortably numb post-cancer routine and will never do anything exciting with my life!

Come to think of it, such mistaken “insights” were pretty much par for the course B.C.  So maybe life is more normal than I realize.

I have begun my career as a remedial athlete.  (I was going to call myself a penguin or a filly, but those guys actually run, and I’m not running yet.)  I have done two races in the past month.

The Sole Sisters took part in the event we’d been training for, the local 5K Race for the Cure, on June 13. Huge crowds (more than 23,000 people running or walking), festive atmosphere, music, support, remembrances. What a great first-time race experience.

The race course wandered through some residential neighborhoods, and folks had set up boom boxes, powerful fans, or “hooray for you!” signs at their front curbs. There were sprinklers to run through, and youngsters offering squirts from their squirtguns. Susan and I walked together, not in any particular hurry, and crossed the finish line, holding hands, at something over 50 minutes.

Susan and Penny before the race

Susan and Penny before the race.

By the way, the Sole Sisters raised over $12,500, placing us in the top 10 out of 700+ teams.  Thanks to all those who donated!

Devoted runners have said that if you want to be sure to keep up your training, you should always register for some upcoming race. So after the Race for the Cure, I signed up for Four on the Fourth, an annual four-mile race in Carrboro.

Quite a different experience, the Four on the Fourth.  Almost all the participants in that one are runners. The race organizers told me it would be okay to walk—after all, the entry fees are going to charity, so the more racers the better—but I looked at past years’ results and saw that most people finished in 45 minutes or less.  I made my goal to finish the race in under an hour.   I had trained only a couple of weeks, and hadn’t yet done 4 miles in less than 1:04, but hoped that race-day excitement and adrenaline would carry me through.

My goals changed on race morning.  It turned out my first challenge was not chickening out at one of the many potential chickening-out points.  But I got past the hurdles—getting up, getting dressed, driving to the site, getting out of the car at the site, going to the starting line…

Within 10 minutes after the race’s start, most of the runners were so far ahead of me as to be out of sight. There were just three of us walking, shuffling, or limping at the tail end of the pack.  By the 2-mile mark I had modified my goal from finishing in an hour to just finishing, period.  If we hadn’t had RFID chips in our race bibs, tracking each runner’s whereabouts, I would have been seriously tempted to sit down in someone’s yard and call it a day. But I didn’t want the organizers to see my blip on a screen and say, “Number 407 is down! Send the medics!”

In the final 50 yards or so, my two fellow limpers/walkers put on a final burst of speed and ran to the finish line.  I had no will to run, so I walked to the end, and finished last.  Way, way last. Very conspicuously last.  Two Sole Sisters were waiting for me at the finish line to give me high-fives.

Hey, somebody had to be last.

Hey, somebody had to be last.

It was an overwhelming and humbling race—it’s been a long time since I risked (and achieved) appearing so vulnerable, unskilled and un-suave in a public arena. The humiliation of being last has now receded, and I’m able to feel some pride at having done the race at all.  As Susan likes to say, “Hey, while you were out there coming in last, there were a lot of other people at home who never got off the couch.”

Next race, I’ll allow more time to prepare, and adopt a more realistic training schedule. But there will be a next race, friends.

During the months of cancer treatment I spent many an hour in the old green recliner in my living room.  I told people that I planned set the thing on fire once treatment was over.  Several weeks ago the recliner, sensing that its days were numbered, collapsed. It’s now sitting on my porch (adding to the white-trash ambiance) until I can get it taken to the dump.

No looking back.

Hey, pardners. Wednesday was my follow-up PET scan and oncology visit. The pertinent info is that everything looks good—the scan was clean, and my blood work showed normal levels of LDH (what Dr. Van Deventer calls “the poor man’s cancer marker”).

I’ll go back for follow-ups every 4 months for the next year.  My lymphoma almost certainly is cured…  what they’ll mainly be checking for at the follow-ups is secondary cancers (an occasional, unfortunate late effect of chemotherapy).

My T-cell levels should be about back to normal in a few more months.  Dr. Van recommends that in the fall I get vaccines for flu (routine for me anyway), pneumonia, shingles, and DTaP (tetanus, diphtheria, pertussis).  Before chemo, I had good levels of antibodies gained from childhood vaccinations (DPT) and illness (chicken pox—helps protect against shingles). But chemo can knock down the antibodies to useless, non-protective levels.  Thus the re-vaccination.

It was a long morning at the hospital.  Four hours of tests, discomfort, and waiting around, with the payoff (i.e., the info I’ve listed above) coming in the last 5 minutes.  I must say, I love the nurses in Hematology/Oncology.  They always act like they’re just delighted to see you. And when the lady who takes my vital signs saw that the lab person had caused me some unnecessary pain, she picked up the phone and bawled her out.  I need to bake some cookies for those ladies, I truly do.

It’s been almost a month since my last post. No news is good news.

My hair looks less like duck fuzz and more like adult human hair. People comment daily on how fast it’s growing, and everyone has a different guess as to what color it is—blonde, grey, brown, “reminiscent of red,” platinum, striped, etc.

I’ve had some pleasant surprises lately to remind me that the low-level functioning to which I’d become accustomed is not permanent:

  • Two weekends ago when on a tour with some friends, I saw that one of the tour guides looked familiar.  Within a few minutes I correctly remembered where I’d met him (volunteering at an event a year ago), the subject of a book he’d told me about when we were volunteering together, and even his NAME.   I was so amazed and excited at this feat of memory that I had to go grab one of my friends and tell her about it.
  • A couple of times in the past week I’ve come home from work or errands and prepared for my customary post-exertion collapse, only to realize that I didn’t need to collapse—the energy reservoirs were not totally drained.  And I didn’t quite know what to do with myself.  This is still a new development and I can’t yet rely on the energy consistently being there*, but now I’ve had a taste of what life might be like in the not-too-distant future. The time will come when I can make plans again, and can expect to do more than just endure each day’s activities.

*I’m reminded of the sign outside OWASA [the water utility], which currently reads:

Water supplies are at 100% of their capacity. PLEASE CONSERVE.

My first post-treatment PET scan and follow-up with the oncologist are in two weeks. I expect I’ll start to get a little anxious as the appointments approach.  I think I’m better, but *what if* the PET scan or the blood test show that something lymphoma-y is still going on inside me?  This morning I went in for a repeat Panorex (panoramic X-ray of my mouth). The technician showed me the image, but apart from the teeth I couldn’t differentiate anything among all the blobby shadows on the screen. I’ll have to wait until the oncology appointment to get an interpretation about whether it looks like my jaw is healing or has gotten worse.

On a final note, Sole Sisters has continued to be a source of positive, forward momentum for me.  Although I no longer expect to run any of the 5K race next month, I do feel confident I can walk it at a respectable pace.  (And after my low-energy early spring, I’m actually pretty impressed that I can walk 5K.) Our team hopes to raise $10,000 for breast cancer research, education, screening and treatment. If you’d like to make a donation to support my team’s goal, please go to my participant page.

Thanks, everyone, for your love, support and head rubs.

UPDATE 5/20/2009:  Thank you to those of you who made donations in support of the Komen Foundation and helped me exceed my $150 goal! I appreciate your financial and moral support.

I’ve been trying to put into words, for myself and others,  why I’m not so happy about getting my hair back. When I was bald, I felt fierce, proud. Now that there’s fuzz growing in, I feel infantilized and embarassed.

Well, once again, NYT writer and prostate cancer patient Dana Jennings has successfully expressed what I’ve been feeling:

In a time of utter vulnerability… I needed the primal ferocity that a buzz cut proclaims. I needed to look like a soccer thug or an extra from “Prison Break” to help get me through…   I still do.

The full column is here.

I’ve talked about my baldness more than any other part of my cancer experience—partly because it’s the most visible to people, but partly because I could embrace it as one aspect of the cancer experience over which I had some control.  As I’ve commented here before, I haven’t noticed any profound spiritual insights or profound personal transformations out of having cancer, but going around bald has been life-changing.

On the “spiritual insights” note, Sol and I were talking last night, and at one point I mentioned that these days I’ve come to admire people who are unapologetic about being atheists, that they help me feel more comfortable with my own atheist tendencies.  He said, “Oh, really? I would think that what you’ve been through with cancer would make you reach out for religion.” Nope, said I—though I’ve appreciated and encouraged people who wanted to pray for me (because it lets me know that people care about me, it helps people feel they’re supporting me, and hey, what can it hurt?). “But,” Sol said, “if you’re staring your mortality in the face, and there’s nothing on the other side, it could be terrifying.”  I said, “No, I won’t be terrified, because I’ll be dead.”

So there you have it: Fuzzy, godless, and unterrified.*

(*To steal a joke from Nathan Lane: “Fuzzy, Godless, and Unterrified! I have all their albums!”)


  • 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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