Anniversary

Today is the one-year anniversary of the mammogram that led to my cancer diagnosis. Next Wednesday will be the anniversary of the diagnosis itself.  This time last year, grandson Henry was here in Dayton with us, having flown solo for the first time, finishing out his week at Settler Survivor Camp at Carillon Park.  The big thing on my mind was how to make the schedule work to get him to the Air Force Museum, which he was very excited to visit.

It's strange to try to place myself, in my imagination, back into the mindframe of this day a year ago. Since then my life has been so profoundly marked and changed by the experience of cancer and its treatment, and it has become so clear that that experience will be a central part of my identity from now on. There is, more truly than is usually the case, no going back to the person I was this day a year ago.

On a trivial level, there's the matter of my hair.  What's growing back on my head is not the same hair that grew there this time last year.  The color is about the same--maybe a bit more silver in front--but the texture is totally different. And it is absolutely resistant to any efforts to impose a style on it. It does what it wants to do, and that's that.  The result is a kind of chemo-Afro.  Fortunately, it's kind of cute, and I get a lot of compliments on it, as if it were a style I chose.  But I didn't. The chemo chose it for me.

My chemo Afro.  Actually, it's a bit more sedate in this pic than usual.

Then there's my arm.  One result of the latest round of follow-up appointments is that I have been told I once again have mild lymphedema in my left arm and must wear a compression sleeve and gauntlet 6-8 hours per day, plus whenever I exercise or travel by airplane. There are also special massage routines I have to follow. This entails a certain burden on my daily schedule, and some attendant annoyances (like having to wear a rubber glove on my left hand whenever I cook or do something else that might get the gauntlet wet or dirty). Just annoyances, but annoyances that occur multiple times a day.  And that means there is no option of simply putting all this behind me: it remains, and will remain, very much with me.

The good news is that all three docs (surgeon, medical oncologist, and radiation oncologist) agree that all is well and I'm doing all the right things. Major good news indeed.

So. No going back, no putting it all behind me.  Only going forward, and exploring this strange new terrain of survivorship (yes, that's what they call it). Besides the lymphedema regimens, my daily schedule is significantly impacted by my stepped-up exercise regimen--a major time commitment, but with very tangible benefits in general well-being. And I find myself readily playing the cancer card when I want to get out of doing things I really don't want to do.  Plus, I gave myself permission to finally act on a long-suppressed desire and get myself a pink flamingo for my garden.

 

Flaminia the flamingo, ensconced in the garden next to the front porch.

My energy level is still somewhat diminished, or maybe more accurately, it's unpredictable.  I've resumed most of my regular activities, but every now and then I just poop out and have to take a two hour nap. So I am reluctant to make any new commitments, although I did agree to do phone banking for the Democratic woman who is challenging our long-time reperesentative in Congress (anything to put a brake on the disaster that is the Trump administration).

Of course, I'm still not quite done with the active treatment phase.  I have a herceptin infusion coming up on Monday, then one more in August, and my final one on September 10. From then on it's just the daily hormone-blocking pill for the balance of 5 years. 

Maybe because I'm still not done, I find it hard to visualize a future shape and direction for my post-treatment life.  Small example: I've always loved to travel, and have often organized my attention around planning and anticipating a major trip, and fantasizing about what other exotic trips I might take. As a result, I get a lot of travel promos via email and snail mail.  These days, they generally go straight into the trash or recycle bin. We do have a modest road trip planned for September, and a visit to New Orleans in October (a family reunion to celebrate out 50th wedding anniversary), but beyond that there is no eagerness in me to plan further travels--a very striking change. 

So I move forward day by day into this strange terrain, taking it slowly, feeling my way, not pushing or rushing. It still feels like the cancer experience is calling the shots in my life, not me. I still need time to get to know who I am, after all I've been through in the past year. It doesn't feel scary, and I don't feel weepy or depressed, but it does feel a little daunting: like a big incomplete project, with no good instruction manual.

Schnauzer Hair, Sweat, and Singing for Joy

Well, in my last post I wrote that my hair wasn't really long enough for me to go without hats, but within about 36 hours of posting that I decided, "Oh, the hell with it!" I was so tired of wearing hats all the time! So I just stopped.  My hair is still very short, but I have been surprised at how many compliments I have gotten on it as if it were a style I chose, and not one the chemo chose for me.  I'm still going to let it grow at least a bit longer, though.

The color is more salt-and-pepper than it was, because the darker hairs that used to be brown are growing back in a kind of charcoal black.  And the texture is a bit weird, kind of frizzly and fluffy.  A friend offered the perfect image: I'm growing Schnauzer hair.  See for yourself:

I have an appointment next week for my second haircut (the first was really just cleaning up the edges some). So even though it's growing very very slowly, it is growing.

On the lighter side of cancer treatment (Gallows Humor Dept.): I received a survey form from the good folks at Medicare seeking my feedback re my experience of cancer care.  I was particularly struck by the passage that said it was very important for them to get responses from all kinds of patients, so if I'm dead, would I please ask a friend or family member to fill the survey out for me. Well, I paraphrase slightly.

A bit of good news: I went back to the lymphedema specialist, after a long hiatus caused by first the taxol rash on my arms and then radiation, and the word is that as of now I do not have lymphedema in my arm--yay! Though I do still have to take certain precautions against developing it, which I will.  There was some swelling in the breast itself, and I learned that I am at risk for fibrosis developing from the radiation, especially in the next two years.  Fibrosis can be a contributing factor to the development of lymphedema. So they taught me a special massage routine to use to drain the swelling, plus prescribed the wearing of a special compression bra with a weird compression pad in it.  Quite effective, and not uncomfortable, but just strange-feeling to wear.  The garment is very, very, shall we say, comprehensive, as lymphedema can affect the back as well.  I refer to it as my Iron Maiden bra. 

Another bit of good news: I have completed the special oncology exercise program and am now fully  back at Personally Fit, where I had been working out for three years before my diagnosis.  And as of last week, I am fully up to speed, doing 35 minutes of vigorous aerobic exercise 5 days a week plus a half an hour with my personal trainer Janet on 2 of those days, focusing on strength, balance, and flexibility.  The folks at the oncology exercise program were perfectly nice, but Janet knows the quirks of my particular (decaying) body.  It's so good to be working with her again!  And the exercise feels terrific. 

It occurred to me, the first time I worked out with Janet and she gave me balance exercises to do, that some of the increased unsteadiness I have been experiencing may be due to simple muscle atrophy from not doing this kind of training for 7 months while I was in intensive treatment.  So maybe as I strengthen those muscles again I will regain some of the balance I seem to have lost--i.e., maybe it's not all due to increased neuropathy after all.  Fingers crossed.

I celebrated the much-delayed arrival of spring and my own returning energy by planting three little parsley plants in my back garden when I got home from PFit this morning.  So good to dig in the dirt. 

My energy level is so much better than it was at the low point that I tend to forget that I am still very much in the convalescent stage, and I get caught by surprise when I suddenly run out of steam from time to time.  So I am still very conscious of making energy-budget decisions about what I do and don't do. One new thing, though, I am considering doing: singing lessons.

At church yesterday singing Easter hymns, I noticed myself consciously employing skills I learned years ago when I took singing lessons for a couple of years when our sons were still kids.  And I reflected that singing is, among other things, a physical skill.  Just as I am enjoying the feel of the exercise again, I would also enjoy building the physical skill of singing.  And while the exercise is partly for pleasure, partly by prescription to reduce the odds of recurrence, the singing lessons would be purely for my own delight.

I don't have a great voice, and I have a rather poor ear for music, but I derive great pleasure from working to improve what capacity I have.  I have spent so much time since my diagnosis doing physically demanding things out of grim necessity; it feels really really appealing to invest in physical effort for sheer joy.

I've made an initial contact to see about setting up some lessons.  I await a callback.

Back in Ithaca, Re-making My Mosaic

You may remember that I reflected on the Odyssey a few posts back in this blog, seeing resonances between Odysseus's journey and my experience of cancer treatment. Well, I am continuing with my re-read of the Odyssey sparked by writing that post.  I'm up to Book 18 out of 24 (the epic is divided into Books, equivalent to chapters).

I tend to think of the Odyssey in terms of Odysseus's hair-raising adventures on his journey home from Troy.  But it is instructive to notice that 12 of the 24 books of the poem take place after he gets back home to Ithaca.  In other words, even when the traveling is over, he can't just resume the life he left.  He has work to do to construct a new life in a profoundly changed reality.

That's me right now.  I am gratefully shedding more and more aspects of "being in cancer treatment" and happily moving on to "just living." But it's not a simple matter of "getting back to normal." To shift metaphors, it's as if pre-diagnosis life were a mosaic.  Cancer diagnosis and intensive treatment ripped up all the tesserae (the little square tiles a mosaic is made of) and shuffled them around.  Now I am engaged in gathering and sorting the tiles, and using them to make a new picture.  It has most of the same colors and proportions of colors, but some tiles got lost, and some new tiles have been added, so the picture won't be identical to the old one.

So, for example, a number of people have said to me, in tones of congratulation, "So, you're all done now!"  No, I'm not all done.  I still have a port implanted in my chest, and I'm still getting an infusion of herceptin through that port every three weeks, and dealing with the side effects of the herceptin.  Yes, they're relatively trivial compared to the side effects of the chemo and the radiation (watery eyes, drippy nose, fluid retention and puffiness).  But they're there, they're with me every day, and they didn't happen before this adventure began. They give a different texture to my life, and they won't go away until I finish with the herceptin at the end of September.  (The good news is, as of yesterday I have passed the halfway point with the herceptin--yay!)

I also began anastrozole, the hormone blocking pill I will have to take for 5 years, and am now a little over 5 weeks into that experience. I have not really noticed any side effects from it so far, but I also note that online patient forums suggest some side effects may not show up for several months.  So I live with the possibility that I may have to deal with some down the road, and for a long time.

New tiles in the mosaic. 

More new tiles: While the neuropathy I experienced in my fingertips towards the end of chemo seems to have gone away completely (yay!), the neuropathy I have had in my lower legs and feet for many years seems to be permanently just a little bit worse thanks to the chemo, and my reflexes (to recover when I start to lose my balance) just a bit more diminished.  I have experienced a little more unsteadiness on my feet, and I had two falls in quick succession, one bad enough to lead to x-rays of my right foot and right ring finger.  No fractures, and both have healed up almost entirely, I'm happy to say.  But I have had to become more diligent about using my trekking poles and more vigilant about developing the habit of visually observing where my feet are (since I don't get nerve feedback from them). New tiles, new colors.

But to balance all that, I do have a lot of good news to report! 

Number 1:  I have hair!  Not a whole lot, true, but when I look in the mirror, I see a head with hair, not a skull with sprouts.  It's a start.  I'd say right now I have more hair than Jeff Bezos, but less than Mark Zuckerberg.

Jeff Bezos, founder and CEO of Amazon

and owner of The Washington Post.

A major bogeyman in Donald Trump's eyes.

Mark Zuckerberg, founder and CEO of Facebook.

A major bogeyman in lots of people's eyes,

thanks to the Cambridge Analytica mess.

I'm getting really tired of wearing hats all the time, but I'm still not quite ready to go out in public without one.  Especially since apparently we're never going to have a real spring this year. My head gets cold! I don't understand how bald guys do it.

"Spring," allegedly.

Taken yesterday morning.

Number 2 good news: My energy level is way way better than it was, and so is my stamina, especially since I've started exercising again.  I've been doing a special oncology exercise program run by folks trained in how to deal with things like lymphedema risk.  It's twice a week, and next week will be my last week of it.  Since my oncologist's guideline for exercise, to minimize side effects and lower the risk of recurrence, was 30-40 minutes of vigorous exercise 4-6 days a week, I have been working toward that by adding cardio days at Personally Fit, where I had been working out regularly before the diagnosis.  I find myself increasingly antsy to be done with the oncology exercise program and get back to working with my trainer at PFit.  So I went ahead and contacted her and set up a series of appointments for as soon as I finish the oncology exercise program.  And meanwhile, when I go there to do my cardio days, I am so warmly greeted, both by staff members and "regulars" I have come to know by sight over the years, that it is very gratifying and motivating.

Number 3 good news: A lovely weekend visit over Palm Sunday weekend by my sister Anne from New Orleans and my niece Joan with her 14-month-old daughter Hazel from Houston.  I really don't quite feel ready for air travel yet, so it is just such a treat that my sweeties are willing to come to me--Peter and Henry back in December, Anne and Joan and Hazel just now, and looking forward to Nick and Katey and their two little girls next month. 

I'll close with some pix from Palm Sunday visit (they were all in shock at the weather!).

Hazel with her momma Joan at the airport

on their way to Dayton.

Anne and me riding the Mikesell's Potato Chips 

delivery wagon on the Carillon carousel.

Hazel and Anne at Carillon.

A cherished family tradition is passed on:

Anne helping Hazel explore the antique toy stove

that belonged to Michael's grandfather,

that every baby thereafter has played with.

Moving On

Radiation is over (a week and a half ago)--no more daily treks to the cancer center. My skin seems to me to be healing up remarkably quickly from the radiation burns.  I don't know, maybe everybody's skin heals quickly, but this has been faster than I expected, and I'm grateful for that. This afternoon I will attend the first session of a six week long oncology exercise program, both to start getting back in shape and to learn how to exercise safely in light of my (lifelong) lymphedema risk.  After that, and maybe concurrently for cardio only, I will resume my workouts at the exercise center I've been going to for the last three years. I'm now three days into taking my daily hormone blocking pill, a regimen I will follow for five years. And by the end of this month I will be halfway through my year of herceptin infusions.

So the intensive phase of my cancer treatment is over, and I'm switching into (and learning) the long-term phase. It's a new chapter.

Interestingly, I have observed in myself something akin to the nesting instinct said to arise in pregnant women in the last couple of months before birth.  A compelling impulse to re-do my space here at home has welled up in me.  So I started by trashing or giving away cancer equipment or supplies I no longer need, clearing away the set-up I had created in the bathroom for preparing the saltwater soaks, and moving what little equipment I do still need to less prominent, less visible places.  But it has gone further than that.  I have experienced an intense drive to declutter my spaces in general, to rearrange and refresh them.  Some of the changes have been subtle, likely not obvious to the casual observer, like replacing houseplants that had become scraggly.  Still, these subtle changes have been significant to me.

Others have been more obvious.  Last Sunday, for example (it's Tuesday as I write), I shoved furniture around and rearranged the living room, which also entailed some minor rearrangements to two other rooms as furniture from the living room found new homes.  The central goal was to move my favorite chair from the coldest, darkest corner of the house, where it has sat for years because it was part of a visually pleasing arrangement of conversational groupings, to a spot at the opposite end of the room where it is tucked into a bay window, with a view outside to bird feeders, garden, and sky, with light flooding in over my shoulder.

Yes, that end of the room now looks more crowded, but something in me is no longer interested in how my room looks to the hypothetical (nonexistent) House and Garden photographer and insists instead on how it feels for me to live in.

I'd say that, coming more from my gut than my head, I am starting to engage with the process of redefining myself, no longer as cancer patient but rather as cancer survivor.  No, more accurately as someone with a history of cancer and its treatment--i.e., person first, history of cancer secondary.

I'm still in process, probably will be for a goodly time.  But it feels good.

The coldest, darkest corner of the room,

where my comfy chair sat for years.

My comfy chair in its new warm, 

well-lit spot, where the birds sing to me.

Floating in the English Channel

Fans of "Foyle's War" (and if you're not a fan of "Foyle's War," you should be) may remember an episode that features an innovative doctor who gets into trouble with the military brass because of his unorthodox method of treating pilots suffering burn injuries. The doctor observed that pilots shot down over the English Channel, who spent some time floating in seawater before being rescued, seemed to recover from their injuries more quickly and thoroughly than pilots who were shot down over land. So he began treating all of his burn patients with saltwater soaks.

Well, that's me right now.  Radiation skin injuries are essentially burns, and saltwater soaks are a primary form of treatment.  Consequently I am now spending fifteen minutes at a time with a cool saltwater compress on the entire radiation treatment field, as they call it, followed by fifteen minutes of allowing the open air to bathe my injured skin.  That's a half an hour at a time, four times a day.  It makes for a rather quiet, contemplative, mostly homebound existence.

 Watch "Foyle's War." You won't regret it.

Michael Kitchen (center) is marvelous

as Christopher Foyle, police detective

in wartime Dover, England.

From this you may surmise, accurately, that I do indeed have some radiation injuries--two areas that are quite inflamed, one small area that is open and raw, a few small blisters, and overall quite red and tender.  Fortunately I only have full-breast radiation for the rest of this week.  Next week I have what they call "boost" radiation, which is confined to the tumor bed only, and the radiation tech said she was pretty sure they would be able to avoid the two most inflamed areas.  Then I'll be done.

The nurse who checked me yesterday said I'm actually doing quite well for this point in my treatment.  But I do find myself recurring to that image of the World War II pilots shot down over the Channel. At this point I feel like I have been assaulted and battered, in a variety of ways, for months on end: surgical biopsies in August, surgery in September, poison infusions October through December, and radiation from January to now.  By the time radiation is over, it will have been seven months.

That feels like a long time.  I am ready, more than ready, to be left alone for a while to heal.

This puts me somewhat at odds with the liturgical season (it is Ash Wednesday as I write this), and I must confess that this year my treatment calendar is far more prominent in my awareness than the liturgical calendar. I'm not really feeling like giving anything up for Lent.  I've already given up a lot.  I think I'll just focus on looking forward to Easter.

A surprise gift last Saturday from a friend.

Very cheering.

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.