Aftereffects: A Rash Adventure

Turns out, just because you're no longer getting taxol infusions, it doesn't mean you're done with taxol.  Now that the steroid has cleared from my system I have been "enjoying" an interesting variety of taxol side effects that the steroid had been suppressing. I'll tell you about a couple of them.

The first to emerge was a horrible itchy, burning rash that started on the backs of my hands and spread all the way up both arms to my shoulders.  I was in a mild state of panic, because rash is listed as a possible side effect of herceptin, and I could not imagine having to live with it from now to the end of September.

The nurse practitioner who looked at it was baffled and just suggested antihistamines and cortisone cream, which took the edge off enough to allow me to sleep at night but did nothing to stop the progress of the rash up my arms.  Finally I got to see my oncologist, who said it almost certainly wasn't herceptin caused (whew!), and likely was a taxol side effect showing up now because the decadron was no longer suppressing it.  The taxanes (taxol and taxotere), he said, are known for causing a dermatitis that starts at the hands and moves up the arms, whereas most drug-reaction rashes start on the face and chest and move out to the extremities.

He prescribed a short "burst" of steroid pills and heavy-duty moisturizing cream, because the rash is aggravated by dry skin.  This was all happening when we are having an extreme cold spell, which meant the furnace was running all the time and the air in the house was very dry.

He was right, thank God.  I'm now about a week past the end of the course of steroid pills and a bit over a week past another triple-strength herceptin infusion, and the rash is gone and shows no sign of returning.

Another late gift from taxol: while my scalp hair is starting to grow back, my eyebrows and eyelashes are thinning to near-nothingness.  So at last I will have the full cancer-patient look, it seems.

 

On the plus side, my energy level is definitely better than it was at the lowest point, and so far at least does not seem to have been adversely affected by the radiation treatments.  I'm two and a half weeks into the radiation, so a bit over one-third the way through.  I'm starting to have a little bit of skin reaction (redness, irritation in skinfold areas), but nothing too great or too uncomfortable.  I'm perfectly capable of driving myself to and from my appointments.

 The Greater Dayton Cancer Center,

my home away from home.

Chemo and herceptin infusions happen on the left side in the front,

radiation happens on the right side in the back.

Doctors' offices are in the middle.

The zapper machine.

The bench slides up under the zapper arm,

which rotates around to zap me

from different angles.

More good news: the heavy-duty moisturizing cream I'm using, both for my arms and for the radiation treatment field, seems to be eliminating the (taxol-caused) problem I had been having with the skin of my fingertips splitting open, so I'm thinking I will try knitting again.  I had to set it aside when my fingertips began splitting open all the time, way back early on in the chemo period.  I've got quite a backlog of work to do to finish the 2017 temperature blanket.

Finally, while I'm still reading lots of murder mysteries (a favorite escapist genre), my last post inspired me to re-read the Odyssey.  The last time I read it was when I read it aloud to my sons when they were young boys (both are now in their 40s), so it has been a while.  I highly recommend the Robert Fagles translation, new since my last reading and very readable.  Good stuff, the Odyssey.  It's fascinating how much I see in it now that I didn't see thirty-some years ago when I last read it.

A Thin Place

The Latin word limen means "threshold," a transition point between two spaces--one room and another, or the indoors and the outdoors.  From limen we get the phrase "liminal space," used by professionals in a variety of different fields to refer to being at or living through a point of transition in one's life.  Sometimes it can be a relatively brief experience, sometimes quite an extended one.

Odysseus spent twenty years in the liminal space between fighting in the Trojan War and returning home to his faithful wife Penelope and dog Argos.  The entire Odyssey is the account of that liminal space, full of adventure, danger, and strangeness.

A significant characteristic of a liminal space is that we generally know a good bit about what we're moving out of, but not nearly so much about what we're moving into.  Hence the sense of adventure, danger, and strangeness.

Celtic culture would identify liminal spaces as "thin places," places where the boundary between the everyday and the everything-beyond-the-everyday is thin, allowing us a glimpse, a touch, a shiver of that mysterious, wider realm.  There are both spiritual dangers and spiritual opportunities in such places.

It just came clear to me this morning that that's where I am right now: in a liminal space, a thin place.  I'm about 2 1/2 weeks past my last taxol plus decadron (steroid) infusion, and still three days from my first radiation treatment. I'm a little over a week past my first triple-strength herceptin infusion, something I will be having once every three weeks from now until the end of September.  Radiation, coming up Monday at 11:15, is the last of the unknowns in this intensive treatment phase of my cancer journey.

Looking back, I notice how crisp the demarcation was at the start of chemo.  One day, never had chemo; next day, and for the next three months, here's the chemo experience.

The transition out of it is far less clearly demarcated.  Because the chemo came regularly once a week like clockwork, my body was never really done with one infusion's effects when I had the next one.  Now for the first time I am experiencing the transition out of the taxol and decadron.  Some side effects are just now showing up for the first time (a bumpy rash on my forearms, for example). Others seem to be just slowly waning (insomnia). Others seem to wax and wane unpredictably (the fatigue, the "down" moods).  And what life will be like on the other side of all this, I don't really know.  All I know is, it will be different.  It will never again be like I never experienced being regularly poisoned for three months.

So I reflect on Odysseus.  For him, too, the transition in was clearly demarcated.  With an army of others, he left behind everyday life and sailed briskly off to war.  Then there was the long slog of war itself, an experience I imagine to be one that keeps a person firmly rooted in the present moment, just doing what one has to do right now to stay alive.

The three months of chemo felt a lot like that.

And then it's over, and all of a sudden an undefined future opens out before one.  It's disorienting. What now? And who am I now, having gone through this intense life or death experience?

Maybe it was a very good thing that it took him twenty years to get home--he had monsters to wrestle with and a new self to forge.  Polyphemus, Circe, Scylla and Charybdis, and the Sirens appear in a new light when seen from that angle.  I've seen articles that say a real issue leading to PTSD in today's military personnel after deployment is that they are flown home so quickly, depriving them of the processing time with peers that the long ocean voyages home provided for World War II vets.

I doubt if I have twenty years available for my liminal journey, since I'm already 71. But I find it helpful to name to myself that that's where I am: in a liminal space, a thin place.  It allows me to embrace the experience of just being here and letting it unfold, resting in the knowledge that whatever lies on the other side of that thinned boundary is vast and mysterious, with challenges and possibly dangers, but also offering opportunity, adventure, potential spiritual enrichment. 

"Possess your soul in patience," my mother would often say.  Yes.


UPDATE:
The last two weeks of chemo and the two weeks after were somewhat brutal: extreme fatigue and general malaise, compounded by a nasty persistent dry cough that began a few days before Christmas and is still with me.  Then just as things seemed to be getting better, I suddenly ran a fever for two days this week.  Could have been a bug, could have been a side effect of the triple herceptin dose.  But now my temp is back to normal and has been for over 24 hours, so I am modestly hopeful that I will be leaving the chemo effects behind soon.  The surgeon had me get a left side only mammogram last week, which showed no cause for alarm, and the oncologist had me get an echocardiogram (herceptin can cause heart failure).  Mine was normal.  So that is good.

What I did on my last steroid high day:

making savory gummy bears.

The light tan ones are chicken broth, 

the dark ones are beef broth,

and the red ones are V8 juice.

How my hair looks after chemo:

Most of what you're seeing

is the hair that never fell out

and has been growing since the last time I shaved it.

There are a few little tiny hairs, not much visible here,

that have grown back in.

Rest assured I will not be going about

without a hat or scarf for a while yet.