Mad Eye Moody and Survivorship

The last stretch of our week of fine weather today — sunny and in the low 50s.  Tomorrow comes the rain. Meanwhile, back in Ohio, my parents report that the icicle hanging over their front porch is 14 feet long.

Along with many other people around the world, we’ve been spending a lot of time before the TV, watching the Olympics.  My son has developed a fascination with curling, which he now thinks is more interesting than skiing.  (His sister groans and disagrees.)  But he’s not the only one.  It seems Marge and Homer Simpson  have also discovered their own hidden talents:  http://www.hulu.com/watch/125173/the-simpsons-boy-meets-curl

The mystery of the anonymous Valentine’s roses has been solved. No one ’fessed up (though several people said they *wished* it had been them), so I was forced to call the company to divulge the sender’s identity.  Sorry to say, I have no secret admirer.  The flowers were sent by a store that sells pens at a mall near Seattle.  We shopped there a couple weeks ago for my husband’s birthday present, and I had forgotten about the form they had me fill out for a free order of flowers.

OK, so it was a commercial set-up, but they’re still pretty.

Last week’s radiation visits went routinely.  The skin is getting redder and itchy, so I’m supplementing the aloe lotion with hydrocortisone cream. When I saw Dr. H on Thursday, he said everything is going well. That was after he pet me on the head. He said he really likes the way the new hair feels — so soft — when it comes back in.  He and my daughter have the same inclinations — pet and marvel at the new hair.  Rather like people putting their hand on a pregnant woman’s stomach.  I don’t mind being pet on the head (depending on who’s doing the petting), but I *never* wanted anyone touching my pregnant belly.

The week also brought more changes related to the chemotherapy.  My fingernails still look bad, but the aching and stiffness in the hips has diminished.  My belly skin has gotten rough, and I continue to be more susceptible to cold temperatures. My eyebrows no longer need supplementing.  I looked in the mirror one day and thought, wow, what are these grey shadows above my eyes?  Oh!  Those are my eyebrows — they’ve come back!  I now have less of that bald chemotherapy look, am wearing hats less often, and I begin to recognize my former self  re-emerging.

Today was a double-header at the oncology center: a visit to the infusion center and the daily rendezvous with the linac.

The Zap Count: 23 down, 10 to go.

I went to the infusion center at 8 a.m. for a blood count, port flush, and a visit with my medical oncologist (“med onc“ as compared to “rad onc“).  I was the only patient there at that hour, though the nurses were already busy.  Since I was there for legitimate business, I indulged myself with my usual “infusion breakfast.”

The Popsicle Report: Two boxes of popsicles in the freezer, but not my favorites.  These were regular, average color-on-a-stick varieties.  I chose purple.  It went well with the green tea.

The blood numbers are not quite normal (white count 3.4  — normal is 4-11; hemoglobin 10.9 — normal is 11.6 -15.5),  but it’s too soon for them to have recovered totally. Dr. L says things look good, and I can have the port taken out any time I’m ready.  Since the other side of my chest is currently under assault from radiation, I think I’ll wait a little longer. And there’s the readiness to take the mental step.  If you’re going to take out the port, you’ve got to sign on to the idea that the cancer is really gone.

We also talked about the recent report of the possible benefits of aspirin in preventing recurrence  (http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Can_Aspirin_Reduce_the_Risk_of_Breast_Cancer_Recurrence.asp).  The numbers are almost too good to be true — 50% lower risk of recurrence and death — but they shine the spotlight once again on the lowly aspirin, which I figured I’d eventually be taking given the family history of heart disease.  Dr. L pointed out that I’m nearing that age when taking a daily aspirin might be a good idea anyway.  (Hey, wait — in earlier appointments he’s called me a “young woman”!) I’ll see what the  naturopath has to say about it. In earlier appointments, he’s talked about preventing inflammation as a way to help prevent cancer, and there does seem to be a link between the two.  Maybe these findings strengthen that link.  The article indicates that NSAIDs like ibuprofen also seemed to be helpful, but not Tylenol.

The next time I see Dr. L is 3 months from now. No follow-up scans, no routine blood tests. None of these are helpful, scans being too costly and radiation-dense for the scant results, and tumor markers in the blood are unreliable for breast cancer. We assume the chemotherapy wiped out what was there, but there’s no window into the body to peek through to make sure everything’s still clear. So you go through the days keeping watch.  “Constant vigiliance!“ as Mad-Eye Moody shouts at Harry Potter and his fellow students.  “Constant vigilance!“ Between check-ups, and continuously for the foreseeable future, it’s up to me to sense if something is amiss.

As I mentioned before, if it’s going to spread, breast cancer usually heads for the bones, liver or lungs.  So the best I can do is educate myself about what to watch for, and Dr. L spelled it out.  Loss of appetite or weight (indicating liver involvement), a dry, persistent cough (lungs). Bone pain that becomes constant and progresses.  (Thanks to those Neupogen shots, I actually know what bone pain feels like.)  But, he said, the cancer doesn’t go for joints and, for some inexplicable reason, usually doesn’t show up below the knees and elbows.  “Everything else,” he said, “is fair game.”  He told me that 80% of recurrences are found by the patient. So this will be a test of how intimately I know my own body.  I feel as though I’ve just been put out to sail a three-masted schooner when all I’ve ever commanded is a rowboat.   All hands on deck!

Dr. L did not pet me on the head.  He said he likes the hair when it’s just starting to come in, like a newborn’s, and I’m past that point.  “So, what,” I responded, “You’re saying I need a haircut?”

While in the infusion center getting the blood drawn, I asked the nurses how you calculate the length of time you deem yourself a “survivor.”  You’ll hear people say they’re a 12-year or 20-year survivor (I’m aiming for 30, give or take), but I wasn’t sure whether the clock started from the day of diagnosis or the end of treatment.  Eileen, the nurse who presented me with my souvenir T-shirt at the end of chemotherapy, answered promptly, “From the day of diagnosis.”  She said that the term “survivor” (which I believe is now overused, but that’s a topic for another post) has recently been specifically defined by oncology nurses to mean anyone who has received a diagnosis of cancer, from the very day they’ve been diagnosed. So even at the moment you hear the awful news, you’re already a survivor. I’m not sure I agree with that position. How can you survive something you haven’t even been aware of and have not yet been treated for? But by her measure, I am a 9-month “survivor.”  (Nine months on; if I‘m aiming for 30 years, that‘s 360 to come.)

I got news last week that another “survivor” is doing well.  When we went for dinner one night, I encountered the waitress I’d seen months ago at the infusion center when she was tending to her mother, who was being treated for esophageal cancer.  She greeted me with a hug, an acknowledgement of a fellow traveler on the same path.  Her mother, she says, is doing well after 7 rounds of chemotherapy and 35 visits with the radiation equipment.  She was one who had to don one of those white mesh head molds that line the shelves of the linac room. Because she’s claustrophobic, her daughter had to help her on and off the table and talk her through the session.  She got to keep her head mold when her treatment ended, and her daughter is planning to decorate it and hang it above her mother’s bed.  Perhaps the thing will induce nightmares, but maybe its another example of how the human spirit seeks to overcome the dark and frightening.  Large amounts of courage displayed in small but significant ways.

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