Penny’s Blog

A week and a half past my last treatment, and no longer in pain!  The sores in my mouth are healing. I’m off the painkillers and can chew solid food.  My tastebuds will take longer to heal, I guess—I still can’t taste Sweet or Salty.  Eating “treat” foods like cake or french fries is disappointing… they taste like cardboard.  (I keep trying to make them taste good, through sheer force of will, or by recalling how they’re supposed to taste, but that hasn’t worked so far.)  I can, however, taste Tangy and Spicy to some extent.

The other lingering effect of radiation is that my chin and jaw are red, dry, and peeling, as if sunburned.  Even years from now, this part of my face may continue to be hypersensitive to the sun.  A cancer survivor told me that “Radiation therapy is the gift that keeps on giving,” and I see what she means.

On the plus (?) side, I’m getting furrier.  The fine blonde fuzz continues to grow on previously-bare areas:  scalp, armpits, face…

I’m still more tired than I’d expected to be at this point.  At Sole Sisters last week I walked near the back of the pack with another slow person… I may do that again tonight, and for the remainder of the program.  I may have to modify my original goal—to run part of the race in June—and aim instead just to finish the entire course, possibly at a slow walk.

My impatient side believes, expects, that I should be hopping back up to normal energy levels by now.  My body has other ideas.  As during chemo, the body wins out, and forces me to lower my expectations.  Maybe I’ll embroider “All in good time…” on a pillow (or a punching bag).

I’m done, I’m done, I’m done I’m done I’m done. Yesterday was my last radiation treatment.  I brought home the custom-fitted radiation mask, threw out my parking permit, and disabled the daily 2:45 alarm on my Blackberry.

Yes, the side effects have been horrible lately, but the time spent at the radiology clinic was remarkably pleasant.  There were no needles, no sickening smells, and no queasiness… and there was a lot of pleasant human interaction.   I’ll miss the familiar faces and friendly conversations in the waiting room. I’ll miss Talisha and Traci and the groovy nurses, PA, and receptionists.

So now I enter that weird post-treatment phase that I’ve heard other cancer survivors talk about.  (I guess I’m now a “cancer survivor,” too—no longer a cancer patient.)  Being released from the slog of treatments is a relief… but it also means losing frequent encouragement and concern of medical staff, talking and commiserating with other cancer patients, a clear set of directions and expectations, and the structure that treatment schedules create in your life.  After all these months in head-down, let’s-just-get-through-this mode, I now lift up my fuzzy head and see a very blank-looking future.

I realize that “What do I do with my new life?” is a lot nicer problem to deal with than “How do I face my impending death?”   But it looks like I’m going to need just as much help adjusting to this change as I did adjusting to the cancer diagnosis.

At Sole Sisters this week I talked with a woman who’d survived breast cancer and, later, ovarian cancer.  She talked about full recovery taking many months.  She said, “A year from now you’re going to feel really good, and you’ll realize, ‘Wow! This is how I used to feel all the time.’ When you’re sick and healing you get so used to feeling tired, you forget what normal was.”  I know she’s right, that what I consider pretty good right now is not even close to how good I’m going to feel six months from now.  I’m really looking forward to that.

That is all.

I can’t stand it, y’all: I just have to tell you all about my mucositis.  This is a common side effect for people getting some types of chemotherapy or, as in my case, radiation therapy to the head and neck.

[Okay, I wrote a lengthy post about this on Sunday night, giving details about symptoms and pain and the like.  On reflection, I think it was neither particularly enlightening nor entertaining.  It just sounded like griping.  So I’ve snipped that stuff.  Here’s a summary, instead:]

To quote Wikipedia:

Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer.

My mucositis is in my mouth. It hurts. It makes eating, talking, tooth-brushing, spitting, and other mouth-related activities painful and difficult.  It’ll probably get worse over the next several days; after my last radiation treatment it should heal in 2-4 weeks.

Bleah, and ouch.

For a change of pace, I thought I’d write a post that doesn’t involve any complaining. 

I’ve joined up with a group at UNC called Sole Sisters. Judy Swasey, a nurse and avid runner, wanted to help women (re)discover the pleasures of exercise, and so started the program 8-9 years ago. Each March 100 women begin a 3-month training program, working up to the Komen NC Triangle Race for the Cure in June.  The goal for every participant is to finish that race, whether that’s by running, walking, or hobbling.sslogo_small

This is a great group!  Women of all ages, races, shapes and sizes gather once a week to talk, laugh, and walk/run. Some women are new to the program this year; others sign up every year. Some women are cancer survivors; some aren’t.

For me, it’s a non-scary way to ease into physical activity again after several months of languishing.  A few weeks ago I bought a new pair of running shoes for the first time in—what, 10?—years.  This week I ventured out in public in workout clothes for the first time in years. I’m still carrying the bad gym-class memories of always being the slowest and fattest member of the group, so I can’t tell you how refreshing it is that (a) I’m neither the slowest nor fattest member of this particular group, and (b) even if I were, no one would care, because everyone’s so delightfully supportive.

Besides finishing the race in June, my personal goal is simply to attend practice every week from here on, and not wimp out.  (Long term, maybe I’ll get fit enough to resume working on the goal I had to defer last fall: to go car-free.  The bike’s waiting in the shed…)

Radiation got off to a very bad start (and I still don’t feel like talking about that), but the treatments themselves have been almost pleasant. Most radiology patients come in daily or several times a week, and arrangements are streamlined such that appointments are generally short, predictable, and efficient. The clinic gives you a bar-code sticker for the back of your medical record card, so you can check yourself in each appointment by scanning the card. They issue you a parking permit for the special handicapped/radiology/clergy lot right next to the hospital. You have the same radiology technicians every time, and you get to see and become familiar with the same folks in the waiting room.

The exception is that some days (especially early in the week) the clinic is packed; other days it’s nearly deserted. And one day a week you check in with the doctor after your treatment.  On crowded days you might have to wait 40 minutes for your zapping and another 20-30 to see the doctor. Other days you’re in and out of the clinic in 15 minutes.

My radiology techs are Talisha and Traci.  One of them fetches me from the waiting room, and we walk back to T&T’s X-ray room. I put my glasses, earrings and jacket on a chair, then lie down on the table. It’s a narrow, sheet-covered table, with a blue foam rubber knee rest and a blue head cradle. They hand me my custom-molded mask, let me get my mouth around the mouth piece, then they bolt the mask down onto the table to hold my head still.  Some lines of red light get projected onto me; if necessary T&T tug the bedsheet left or right an inch or two, to align the red lines with the dot tattooed on my chest.

It’s hard for me to see exactly what they do next, what with the head-immobilizing mask, but I know that they zap me three times, each from a different angle, and one of them comes in before each zap to adjust the equipment.  The lights are on, there’s a pretty picture on the ceiling (I can see parts of it through the mask), and music is playing. I can tell when the zapping is happening because there’s a buzzing sound for 20-40 seconds. After the third zap they come in and unbolt the mask. I gather up my stuff and leave—no checking out at the desk.

Check out this NYT writer’s radiation story (thanks for the link, Robin!): http://well.blogs.nytimes.com/2009/01/20/the-glow-of-cancer/?emc=eta1

How I’m doing in general these days is… okay.  Energy level is improving. Some other chemo side effects, though, linger.  My digestion is still weird… my hairless nose still drips… I’m still having hot flashes… and, oddly enough, I think my toenails may be getting ready to fall off.   Hey, got my chemo port removed on Tuesday!  (I asked if I could have the port as a souvenir, but it’s considered a biohazard—I guess because it has some of my blood in it—so they were required to dispose of it.)

During much of chemo I was too drained to feel much more than apathy, pitifulness, and stiff-upper-lippedness . Now I have the wherewithal to muster up the occasional outburst of hilarity… and also some anger. I’ve survived this particular cancer occurrence, so “Please let me get through this” has been replaced by “Dammit, why did I have to go through this dreck and waste six months of my life?”  (But that’s healthy and normal, right?)

When you have an illness that involves unfamiliar treatments and tests, it’s easy to feel depersonalized, bewildered, and frustrated.  But when the treaters and testers tell you what’s being done to you, and why, it makes the whole thing easier to tolerate.  This used to be one of my guidelines about childrearing, but it applies to patient care, too:  If you can’t give someone control, you can at least give them information, and that helps.

(1) It’s fine to ask a patient, “Did the doctor tell you about this procedure?” or “Do you know what we’re going to do?” But even if the patient says “Yes,” you should still proceed to give her a detailed explanation of what’s going to happen. Because maybe, for example, the doctor told the patient, “They’re going to do a scan to look at your heart function,” but didn’t mention that the scan takes an hour and requires an IV and entails being compressed under a big plate.  Or maybe the doctor mentioned that radiation would involve a head restraint, but he neglected to mention the part about getting tattooed.  I’m just sayin’.

(2) If you’re doing something that makes the patient unable to talk or get up, let her know what her escape options are.

  • Bad (my first Radiology visit):  Putting a mouthpiece in someone’s mouth, unannounced; attaching her to a table in a darkened room; leaving her there while you go run the CT scanner, not having told her how long she would be thus confined.
  • Good (second visit, different technicians) :  Letting the person put the mouthpiece in by herself; telling her, “We’ll be in and out of the room, but we can see you through a window, and we have video cameras going, so if you need anything, just wave your arms.”

(3) Similarly, if you’re going to go off and leave a patient alone in a room for an hour, maybe you could tell her how to contact someone if she needs help.  You could even poke your head in the doorway every half hour or so and say, “How you doin’?” And if it turns out that you end up leaving her alone for 90 minutes instead of the stated hour, you could come by and say, “Hey, we’re running late, but we haven’t forgotten you.”  Bonus points if, before all this, you say, “You’re going to be left alone in a chair for two hours, and not allowed to get up—would you like to use the rest room first?”

Thank you.


  • 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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