Quick update--Another Milestone

So this morning I received my last taxol infusion--and that means the last pepcid, the last benedryl, and (hurray!) the last decadron (steroid).

There it is--the very last bag of poison

to be dripped into my jugular.

Note the yellow warning sticker.

My blood counts remained good, and I wasn't running a fever, so there was no need to delay the infusion.  It's really over.  I see the oncologist tomorrow. He will set up the schedule for continuing with herceptin (the targeted drug).

Meanwhile, Sandra Boynton nailed it:

So far, it's working.

A Sledgehammer For Christmas

Well, this was the week when the cumulative fatigue of the chemo really hit.  Beginning Wednesday evening when the steroid high started to fade, my energy levels and appetite both plummeted. Thursday morning I could barely get out of bed.  Walking across a room is exhausting.  Even sitting in my recliner feels like a lot of effort! And I've been having to force myself to eat (when I don't eat enough the fatigue is even worse).

But hey, I made it to Week 11 out of 12 before the sledgehammer came down!  I count that as a blessing.  Only one more chemo, only one more steroid high, only one more steroid crash.  I can do this. By New Year's Day it will be behind me.

Fortunately we were able to enjoy an early Christmas treat before the Big Crash: a quickie visit by Peter and Henry last weekend.  Cynthia and Lucy had Nutcracker obligations, so couldn't come.  We didn't do a whole lot, of course, just enjoyed each other's company.  It was great.

As Christmas draws near, I am deeply grateful for all of you who hold me in your thoughts, pray for me, send an occasional card or note.  It means so much to know you are out there, that I'm not walking this path alone.  Thank you! God bless you, every one!

Yew Trees and Owls and Me

Since I am soon to finish my course of chemo with taxol (only two more infusions to go!), I thought I would find out a little more about this drug before saying goodbye to it.  I knew it was derived from the Pacific yew tree, but that's all I knew.  That was enough to intrigue me, though. It's a great story.

A Pacific yew tree.

World War II. Penicillin is widely and successfully used.  Postwar, other antibiotics are developed.  Infectious diseases are on the run.  Folks become convinced that all diseases can be vanquished through chemistry.  Heady times!

Again World War II. Research into gas warfare leads folks to believe that chemical agents could be used to destroy or control the growth of cancer cells. At first nitrogen mustards were tested to treat leukemia, and soon an all-out search for possible other cancer drugs was underway.  A well-funded national screening program is established under the auspices of NIH to test drugs submitted by companies and institutions.  

In 1960, the program began testing natural compounds from plant and animal sources--anything and everything (recall that penicillin was derived from bread mold). While there was a lot of traditional wisdom about the healing properties of plants, very little scientific testing had been done, and virtually none looking specifically for anti-cancer effects.  

Now that changed.  In 1960 NIH's cancer screening center entered into a formal agreement with the US Department of Agriculture: USDA botanists, already deployed out in the field all over the country, would collect plants from throughout the US, aiming for as broad a variety of samples as possible.  Some 35,000 plant samples were tested.

So it happened that Arthur S. Barclay, a young USDA botanist, spent four months in the summer of 1962 collecting samples and sending them in.  On August 21, after spending most of the summer in the southwest, he was winding up his collection tour in the state of Washington, in the Gifford Pinchot National Forest, about 10 miles from the town of Packwood near the foot of Mt St Helens.

Note Packwood in the upper right.

For no particular reason--just because it was there, and the goal was to collect as many different plant samples as possible--Barclay took samples from a Pacific yew tree, a somewhat shrubby understory tree native to and growing only in the Pacific northwest. His sample included needles, twigs, and bark.

When the yew samples were tested, the results were exciting.  Something in the bark had a strong anticancer effect.  The chemists requested more yew bark for more testing.

Pacific yew bark.

And there the problem began to become clear.  It took an enormous amount of bark to yield a single gram of the active compound to test.  Harvesting that much bark meant, essentially, killing the tree.

The active compound was isolated and named taxol (after taxus brevifolia, the scientific name for the Pacific yew), and continued to show exciting medical possibilities.  But producing one dose of taxol required the bark of one entire 40 foot Pacific yew, and a yew tree took about 200 years to grow to 40 feet.  Clearly, this was not sustainable.  Pretty soon all the yew trees would be logged out.  And all that logging was taking place within pristine old growth forests. Old growth forests that were the habitat of the northern spotted owl, an endangered species.

Those of you Of A Certain Age may remember the uproar around saving the spotted owl.  It was environmentalists vs. people with cancer (and those who loved them).  Taxol proved highly effective against ovarian, breast, pancreatic, and a certain kind of lung cancer, among others. And it had a unique way of attacking cancer cells, which meant it worked for people whose cancer had become resistant to other treatments.  But to get it might destroy an entire unique ecosystem: Pacific northwest old growth forest.

Gifford Pinchot National Forest, near where Barclay collected his yew samples,

with Mt St Helens in the background.

 

Enter the chemists.  They were confident they could synthesize taxol and all would be well.  But after 20 years of trying, that goal proved to be elusive.  The closest they could come was to synthesize it from a precursor molecule from yew trees that was more abundant than the taxol molecule itself.

 

The story has a happy ending, though.  Some researchers in France discovered that the precursor molecule could be extracted from yew needles, which, unlike bark, were a renewable resource, and that it could be found in the needles of the English yew as well as the Pacific yew.  Some US researchers, building on the French work, developed a significantly more efficient method for producing taxol from the precursor molecule, also using English yew needles as the precursor source.  The Pacific yew trees, spotted owls and all, could be left in peace.

 

English yew is a plant you know well, whether you realize it or not: those ubiquitous taxus bushes that everybody seems to plant around their house foundations. If you stop pruning them, they grow into trees.

 

I kind of love it that the taxol molecule can't be synthesized from scratch, that they have to start with the yew needles: plants and people working together. I like that sense of being embedded in the larger reality of creation.  And I also love it that my chemo comes ultimately from a tree.  I've always had a thing for trees.

 

UPDATE: Ten down, two to go.  Last chemo infusion scheduled for the day after Christmas.  My blood counts continue to be very good, hemoglobin just a hair below normal (iron frying pan!) and everything else within the normal range.  The steroid-induced insomnia finally became overwhelming this week, and despite my deep dislike of sleeping pills I asked for and got a script. Took one last night and got a lovely night's rest, yay! I plan to take one the night of an infusion and maybe 1-2 nights after, but that's all.  Once the steroid high is over, I really don't need that kind of help.

 

My view as I sit in my recliner at the cancer center being infused.

The enhanced version of my view. Michael has been a wonderful support.

 

Weary and Waiting

It came upon the midnight clear,
That glorious song of old,
From angels bending near the earth,
To touch their harps of gold:
"Peace on the earth, goodwill to men
From heavens all gracious King!"
The world in solemn stillness lay
To hear the angels sing.

Still through the cloven skies they come,
With peaceful wings unfurled;
And still their heavenly music floats
O'er all the weary world:
Above its sad and lowly plains
They bend on hovering wing,
And ever o'er its Babel sounds
The blessed angels sing.

O ye beneath life's crushing load,
Whose forms are bending low,
Who toil along the climbing way
With painful steps and slow;
Look now, for glad and golden hours
Come swiftly on the wing;
Oh rest beside the weary road
And hear the angels sing.

For lo! the days are hastening on,
By prophets seen of old,
When with the ever-circling years
Shall come the time foretold,
When the new heaven and earth shall own
The Prince of Peace, their King,
And the whole world send back the song
Which now the angels sing.

Yes, technically it's a Christmas carol, but for me it captures well my experience of this Advent.  The fatigue is definitely starting to accumulate.  My steroid highs are less high (though it still goes a great job of producing insomnia: got about three hours of sleep last night). And the steroid crashes are deeper, and last longer.

But the good news is, only three more infusions to go! And my blood work has remained good.  My hemoglobin count has been just a little bit down for the last three weeks or so, so I'm trying to eat something cooked in the iron frying pan at least once a day.

A mixture of French breakfast radishes and watermelon radishes,

sauteed in ghee.  CSA bounty.

And this week for the first time the white blood cell count was a tiny bit low, so I'm doubling down on the infection control measures.  But neither of these developments was enough to cause the cancer center people to delay an infusion, which is very good news to me.  No delays! Let's get this over with! The last infusion is scheduled for Dec. 26, and a lovely Christmas present it will be.

I've been experimenting a bit with scarves and head wraps instead of hats.  Just trying to have a little fun with this.

The puffy face is a steroid side effect.

And I've found myself opting out of engagements a little bit more, though I have still been able to maintain my exercise schedule, at least four days a week.  It really helps.  

Nurtured By Nature

It's realio trulio November here this week--cold, gray, more trees bare than colorful (by a good margin).  Nevertheless, I have found myself really noticing and appreciating the beauty of my daily drive.

Both the cancer center, where I have my Monday chemo infusions, and the fitness center, where I do my Tuesday through Saturday cardio workouts, are close to the intersection of S. Dixie Drive and Dorothy Lane.  For those of you who know Dayton geography, that's a straight shot down Patterson Boulevard from our Oregon District home.

It's really a lovely drive.  Patterson, with its trees and bushes on the boulevard strip down the middle, runs along the Great Miami River, where I almost always see geese and ducks, and often gulls and a heron or two as well.  Plus, just that once, an eagle catching a fish.

Just before the river curves away to the west, I go past one of my very favorite pieces of public art, the statue celebrating cycling:

Passing it never fails to stir good memories of the many hours I have spent cycling our fabulous trail system.

At this point in the drive too, the sky opens out over the wide curve of the river, and I can savor the textures of the clouds. 

Just past the cycling statue is Carillon Park, against the backdrop of the Calvary Cemetery hill (actually a glacial esker)--gorgeous a week or so ago when the trees were in full color, but still beautiful in a more austere way now that they are mostly bare.

On down the road (Patterson turns into S. Dixie at about this point), I am struck by how many plantings of burning bush there are, still ablaze in deep maroon red.

It's a lovely drive, and it keeps me grounded in the rhythms of this beautiful planet of ours.  A significant part of my healing journey!

UPDATE:
Lots of news!  I'm officially halfway through chemo: 6 down, 6 to go.  And I have dates set for radiation.  Last chemo is Dec. 26, the Feast of Stephen.  Jan. 5 will be the day for the scan and setup for radiation, with the daily sessions starting Jan. 15, continuing 5 days a week for 6 weeks.  So I will have a three-week break from the last infusion to the first zap.

And thanks to a fortuitously timed cancellation I was able to take advantage of, my arm is now wrapped from shoulder to fingers to help clear out some swelling. It's unclear whether it is lymphedema (a known risk when lymph nodes are removed) or just post-operative swelling, but either way the therapist wants it out of there before I move on to radiation.  Hence the wrapping, plus some gentle stretches to do every two hours.

Rhythm

There's a rhythm to my weeks now.  Today, for example, is Thursday, and that means it's Steroid Crash Day, aka What the Cat Dragged In Day.

You see, Monday is Infusion Day.  I spend a quiet morning at the cancer center, ensconced in a recliner reading or knitting or chatting, while the drugs drip into me through my port.  The process is completely painless.  The only discomfort is how cold the room is, and they supply heated blankets to take care of that.  My chemo drug, taxol, is an irritant, so the first thing they give me is a big slug of Benadryl, Pepcid, and a steroid, all to cushion the impact of the taxol.  That means that after my infusion I generally go home, eat lunch, and hit the sack to sleep off the Benadryl.

Then Tuesday and Wednesday are Steroid High Days: complete relief from all my random pre-cancer arthritic aches and pains, plus good energy--such good energy that I generally don't sleep through the night, waking up for good somewhere around 3:15 to 4:30 am.  But hey, who cares, I'm on a steroid high!

But by Thursday the steroid has worn off, and the piper must be paid for those missing nights of sleep.  Hence, Steroid Crash Day.  Don't expect much of me on Thursdays.

After that, the weekend days tend to be an alternation of pretty normal punctuated by random episodes of complete fatigue.  Nevertheless, I have been able to keep to my commitment of 35 minutes of vigorous cardio five days a week (Tuesday through Saturday).

All in all, the side effects I have experienced so far have been considerably milder than I feared, and certainly manageable, for which I am deeply grateful.  Food still tastes good, and I'm eating completely normally.  Well, higher protein than usual, because that's what they tell you to do during chemo.  I am not in pain. I have not had even the slightest touch of nausea.  Much to be thankful for!

AND, I'm now one-third the way through the chemo! Yay!

Adolescence Redux?

Who knew acne was a possible side effect of chemo?  I didn't, but I do now.  Woke up yesterday morning with a major breakout, from chin on up into the front part of my scalp.  I don't know about you, but revisiting that particular aspect of adolescence was not on my wish list.  Oh well.  I lived through it before (nearly 60 years ago!), I can live through it again.  It seems both the taxol and the steroid they give with it can cause breakouts.  I'll see what the oncologist has to say about it when I go in for my next appointment on Monday.

I could tell that the breakout extended to my scalp because what hair I have (which is still most of it) is about an eighth of an inch long.  I went in last week and got my hairdresser to shave it all off.  I just didn't want to deal with clumps falling out randomly.  In the last few days it has indeed begun to thin out patchily, so my timing for the Big Shave was pretty good.

Brandy wouldn't let me pay her, just like she wouldn't let me pay her

for the pre-chemo pixie cut she gave me.

So I have been experimenting with head coverings.  I find I don't really like the turbans or chemo caps, and the wig feels like overkill for most occasions.  I like just wearing hats, and I've been having fun expanding my hat collection.  Here are a few examples.

You've seen the cowboy hat before, but Brandy insisted on taking this pic 

after the Big Shave.

This one always brings compliments.

Rapunzel about to make her debut, a dinner out at the Corner Kitchen

with old friends we had not seen in years.

My one exception to the chemo cap and turban ban: 

this vaguely pirate-style do rag I wear for working out.

Re other side effects: The news is good.  I did NOT have another headache, thank God, so apparently that was an isolated event.  Following the advice from online patient forums, I made a list of side effects I've experienced to take to Monday's oncologist appointment, and while there are seven items on it, they are all quite moderate and seem manageable.  No nausea at all, for example.  And no intense fatigue either.  Some, yes, but in almost two weeks I've only canceled out of one thing that was on my schedule because of needing to take a nap instead.  AND I have kept up with my exercise, 35 minutes of cardio five days a week.  Don't know how long I'll be able to do it, but so far so good.

I'm even still cooking up big batches of stuff to fill the freezer with, something neither Michael nor I expected to happen once chemo started.

Beef stew, directly inspired by an image our pastor used in his homily last Sunday.

I have no new profound insights to share, just one smallish observation.  This cancer treatment business is quite intrusive.  Yes, on one level it's just one 2-2 1/2 hour session per week, but all throughout every day there are what feels like a myriad of little fiddly things I have to deal with or remember to do.  It's little stuff, easy stuff, but there's a lot of it.  Most of it is designed to head off or mitigate side effects, so it's well worth doing.  But it does feel intrusive.

But it's for a finite time: two down, ten to go. One-sixth of the way through.

Support Comes in Many Forms

In the lead-up to my first chemo infusion yesterday morning, I have been blessed with support coming my way from many directions.  People have sent me cards, brought me flowers and candy, lent me chemo scarves, promised prayers.  It helps, folks, it really does! I truly do feel cared for and upheld by you all, and I draw much comfort and strength from it.

One quite lovely experience of support came in the form of a weekend visit by our son Peter from Salt Lake City.  He stayed with us from Friday until Sunday afternoon while he was in the area teaching master classes at ballet studios in Springboro, Mason, and Cincinnati.  We got to show off our fabulous new Main Library, which gave me occasion to notice that I really have been healing well from my surgery.  When I took a visiting friend through Main one week post surgery, I was pretty exhausted afterwards. This time, at just under four weeks, I was fine.  And having Peter with us, even in and out as he attended to his professional commitments, was a fabulous distraction from the count down to chemo.

One of these pictures is not like the other.  Can you see the difference?

I've also been aware this past week of a wise elder woman I was fortunate to have in my life, appearing in my thoughts unbidden but welcome.  My friendship with Betsy Kitch reaches back, oh I'm not really sure, maybe to sometime in the 1980s? Some of you knew Betsy too, but maybe not in as many contexts as I did.

Betsy was trained as a scientist, graduating from college in the 1950s with a degree in microbiology. (Think about that: a woman in the 1950s graduating with a degree in microbiology.) She married Jack, whose career was with the Air Force, and followed him to postings all over the world.  At some point after the kids were raised and launched, Betsy went back to school at the University of Dayton for a degree in religious studies.  She and Jack were devout and active Episcopalians, serving on the vestry of their small parish in Xenia OH and representing it as delegates to national Episcopalian assemblies.

When Betsy's mother died, leaving a modest inheritance, Betsy and Jack decided they didn't really need the money personally, so they set up a small family foundation to fund spirituality and spiritual growth related things.  A mutual friend introduced me to Betsy when she was looking for people to serve on the board of the foundation, which I did for a number of years.  We were both spiritual directors by that time, and found we had much in common.

The foundation sponsored a wonderful workshop that brought Tilden Edwards, co-founder of the Shalem Institute, to our part of Ohio.  And we gave grants to people to pursue spiritual formation and spiritual direction training programs, to make retreats, to conduct Biblical storytelling workshops--stuff like that.

Betsy became a friend, and later a long-time member of the spiritual directors peer supervision group that met at my house. She and Jack also became members of a monthly history-themed potluck dinner group we were part of.

But age was not kind to Betsy physically.  She struggled with a number of different forms of physical decline that caused her pain, diminished function, and short-term memory problems.  The way in which she embraced and walked that journey was profound, and deeply inspiring to me.  Her approach was both very practical and rooted in deep faith.  She used to say that there was little point wasting time bemoaning losses.  Better to regroup, assess the new situation, figure out what adjustments and adaptations you need to do, do them, and keep moving forward, pursuing your passions and fulfilling your mission in life, remaining as engaged as possible in the world around you.  All this she did, with grace, courage, and humor.

And it was not done with either denial or sentimentality. One could sense that she was re-purposing skills she had honed as an Air Force wife, packing up and moving to whatever new place Jack's career took them.

Example: in the last two or three years of her life, Betsy pursued and obtained training and certification as a lay preacher, so that she could serve in that capacity in their small parish that no longer had a full-time priest. This she did, and well, despite her physical limitations.  Or maybe because of them.

Sadly, Betsy was killed in a car crash on an icy January day in 2014.

But she has been very present with me in this cancer journey, encouraging me to assess, adapt, and move forward.  Thank you, dear friend Betsy.

UPDATE: One down, eleven to go! Yesterday's first chemo infusion went incredibly smoothly, no discomfort at all really.  We were at the cancer center from 8 am to about 12:30, but in future the time should be considerably shorter.  They are careful to introduce the meds slowly the first time.  I did, however, suffer a delayed reaction: a truly horrible sick headache beginning around mid-afternoon.  We even went back to the center around dinner time to be checked out.  The doc's directions were to go home, take Excedrin for the headache, and rest.  I was in bed by 7:15, having taken Excedrin and an anti-nausea pill. The sick headache process finally broke around 10.  We were told it might be related to the steroid they gave me, which is known to elevate blood pressure, but the doc didn't want to mess with my blood pressure med yet.  We'll see if it happens again.  I sure hope not.  Worst headache I've had in decades.

Me at the cancer center, infusion in progress, keeping snug under the lovely wrap made from recycled silk saris that I got at the Elephant Shop in Comfort, TX.

Wheels, Sweat, and a Start Date

This has been an eventful week! I'm driving again (yay!), and the very first place I drove was down to the fitness center to start doing some cardio.  It feels soooo good to be active again! Honestly, I could feel the difference from one day to the next, as strength and energy flowed back in with the exercise. And all I'm doing is some very gentle aerobic exercise on the NuStep machine, using my legs only, no upper body exertion at all (hands folded demurely over my belly). But I'm determined to go every day, five days a week, beginning with half an hour a day and working very gradually up to 40 minutes.

At the wheel.  I find I don't need my special cushioning pillow when I'm driving,

but do when I'm a passenger, to cushion the spot where my port is.

Why such determination? That relates to the second major development of the week, my Wednesday appointment with the oncologist, who said he wanted to start my chemo the week of October 9, two weeks earlier than the surgeon had suggested.  Another yay!--the sooner it starts, the sooner it will be over. I hastily made an appointment with the surgeon for this morning (Friday) to get her blessing on the revised schedule.  When I asked the oncologist what I could do to ward off or minimize side effects from the chemo, he said, "EXERCISE--30-40 minutes of vigorous aerobic exercise 4-6 days a week."

The NuStep machine. Kind to my arthritic right hip,

but still quite capable of making me break a sweat.

So that's my priority for the next three months: the chemo treatments, and exercising five days a week.  Anything else--library board business, book groups, social engagements, whatever--is gravy.

This morning the surgeon gave her blessing to this plan and remarked that I had bounced back extremely well from everything done so far.  And also this morning the cancer center called with a schedule of chemo appointments through October.

So. Bright and early (8 am) on Monday October 9 I will have my first chemo infusion.

The surgeon also gave me some guidelines for starting to work back into upper body exercise, but I might just wait until how I do with the chemo before trying that.  Or maybe I'll give it a try next week, my last week before the chemo. 

Last but not least, as of today I no longer have to wear the Iron Maiden style compression garment they sent me home in from the hospital, which I have been living in 24/7.  Well, actually they sent me home with two, one to wash and one to wear. But the surgeon said that from now on I can wear whatever I'm comfortable in, and best of all I can sleep unfettered. So life is good.

That may sound odd, coming from someone in the middle of treatment for breast cancer, but life is good.  Both my surgeon and my oncologist are kind, approachable, straight-talking, and patient.  I have wonderful support from Michael and from friends. My body seems to be rising to the challenge vigorously and well.  I have so so much to be grateful for.

I've set up a countdown calendar on the front of the fridge to keep track of my progress through chemo. And now I have another week to continue to exercise, eat well, and sleep well, so I can head into it in full vigor--a week that will be capped with a quick visit from son Peter, in town on business.  So much to be grateful for!

Count 12 Mondays starting with October 9 and you will see

that my last chemo treatment will fall on Christmas Day.

Hmmm.

The Year Cancer Entered My Life

Between the eclipse trip and all the cancer-related stuff I had to deal with as soon as I got home, I fell seriously behind on my temperature blanket.

For those of you who only started reading this blog recently, a temperature blanket is one you knit or crochet, one row per day for a year, with the color of each row determined by the high temperature for that day.  I've got one going for 2017.  You may scroll back in this blog, if you wish, and read more about it in an earlier post.

So I recently put in some marathon sessions and got myself caught up.

Summer in Dayton in the temperature blanket.

An unusually cool summer.

It became an occasion for reflection.  I remember when I started the project thinking, "Wow, what a fun idea, but this is just a nothing year.  It's not anyone's birth year or wedding year or retirement year or any other significant milestone.  Why memorialize such an ordinary year with a temperature blanket?"

Ha. Little did I know.  It has turned out, of course, to be anything but an ordinary year.  It is the year that cancer entered my life.

I say it that way deliberately: "the year that cancer entered my life," not "the year I got cancer" or "the year I had cancer."  I'm no stranger to major medical episodes, but up to now they have been just that: episodes.  This is different.  It's not an episode, like one of my two knee replacements, that will one day be over and done with.

This is more like a permanent strand of my identity.  Certainly not my whole identity, but a permanent strand of it.  Yes, there is an acute phase, which I am very much in the midst of right now, but even when the acute phase is past, this cancer strand will be with me permanently, changing who I am and how I live.  I don't think of myself as a "knee replacement person," but I do already, and suspect I always will, think of myself as a "breast cancer person."

Part of that sense comes from the nature of the treatment plan.  It stretches out for nearly six years of active treatment, with ongoing monitoring after that forever.

Part of it comes from the remarkable sense I have of having been inducted into a particular community by virtue of this diagnosis.  Breast cancer, after all, is largely (not entirely!) a women's disease, and women tend to be the community builders, the tenders of connections, the caregivers. I have been showered with support from people I know, people I barely know, and people I don't know at all.  Some has been quite practical: a small pillow to cushion the seat belt in the car, from someone I don't know at all. Emotional support from friends and loved ones has included cards, flowers, and home baked cookies.  Spiritual support, in the form of prayers, prayer books, and spiritual tokens of various kinds has come both from loved ones and from other breast cancer people who passed on to me those items from which they themselves had drawn strength. Others have shared music they found healing and consoling.

Yes, friends and family have been wonderfully supportive in my previous major medical adventures, and part of this is just the same--the good people I am blessed with in my life being good to me.  But there is something additional this time: a sense of induction into a new identity, a new community, of shared suffering, support, and purpose.  I am now the recipient of people "paying it forward," and the call seems clear: accept this now, and when your turn comes, pay it forward.

I don't know if I am really capturing in these words what I'm experiencing.  All I can say is, it feels different from previous times.  I can only repeat what I said above: it feels like I am being inducted into a new identity, which comes with both a new community and a new mission.  

UPDATE: 

Met with the surgeon this morning.  I am healing well. It turns out she actually removed five lymph nodes, all of which were cancer free, and there were good clear margins all around. So she got it all out. For those who like hard data, the pathology report concludes that what I had was invasive ductal carcinoma, Stage II a, Grade 2. The tumor was 2.5 cm, which bumps it up to just over the line from Stage I (less than 2 cm) to Stage II (2-5 cm). I will go back for another checkup with the surgeon in four weeks, and she anticipates that the chemo will begin right after that--unless the oncologist says otherwise when I meet with him next Wednesday.

Rapunzel, awaiting her moment.  

The woman who helped me with choosing the wig was remarkably kind and gentle.

Home!

Surgery done, came home same day (though later than expected), and things are looking good. Dr Barney ended up taking out four lymph nodes, all of which look cancer-free on the quick rest (need to wait a week for the final pathology report to be sure). That's a Yay!  And no drain--another Yay! And sitting in my own chair in my own living room nibbling on my own food--also Yay!  Thank you, everybody, for your prayers and love and support.

Let's get real for a moment.

Lest any of you harbor the wrong impression, I am not Wonder Woman, soaring through this cancer experience with feathers unruffled. (Hmmm...who knew Wonder Woman had feathers? I guess now we know.)

For example (to pick just one): Yesterday morning was a rocky patch. For the second day in a row, I suffered intestinal symptoms of stress.  At the same time, I was aware of a heavy lump of dread in my belly.  Keeping my exercise appointment with my trainer helped, but when at the end she asked if she could pray with me, the tears were right there. (It was our last session until whenever the doctor okays exercise again after surgery.)

I realized while driving home that I had been neglecting my tiny angels meditation, so that's what I did when I got home, even though I was on a tight timeline to get to my wig fitting appointment. It helped a lot, and the lump in the belly dissipated.

The wig fitting was a pleasant distraction, and I was fine, much lighter in spirit, for the rest of the afternoon and evening. (You'll have to wait for pictures; the wig I chose had to be ordered in the right color.) But I am taking to heart the lesson: don't neglect the self-care disciplines.

Another self-care essential is contact with friends, in person, via phone or text or email, through this blog. Last night the Corazon group met, a monthly faith-sharing gathering of folks who know each other from our St. Agnes days.  These are people I have known for 40 to 45 years. I'm the baby of the group at age 71, which means we are all dealing with a variety of challenges. Several of us are living with serious diagnoses.  At least two besides me are cancer survivors.  We have a goodly share of hearing aids, implanted prostheses, and other bionic components. But we also share a long history together, and a willingness to be real, to be vulnerable, and to go deep with each other.  That, my friends, is priceless.

Another coping strategy I have been consciously employing lately is buying stuff. No, I don't mean garden-variety "shopping therapy." What I've been doing is going over my notes and the handouts I've received from various sources and buying the supplies that are likely to be needed and/or helpful during the chemo phase.

So I now have a stash of things like lemon drops (said to be helpful for nausea), Lysol wipes (for phones, remotes, and doorknobs if my white cell counts drop and I become immune compromised), meal replacement drinks (for sipping throughout the day, again if nausea is an issue), plastic cutlery (if metallic taste caused by chemo interferes with appetite), and other such stuff.  Partly this is practical: do the shopping while I still have full energy, before surgery and chemo sap it.  But significantly, it's a way of allowing the realities of the journey ahead to sink into me step by step--like cutting my hair short ahead of time.  It helps to break down the looming monster threat into a series of individual components that can be prepared for.

Writing this blog is a a significant self-care strategy as well.  I hope some of you find it interesting and of value to you.  I can assure you, it is of great value to me.  Writing it allows me to tap into and experience my own creativity flowing, a natural high and an in-the-flesh reminder that I am more than this cancer.  And as I write it, I am aware of all of you out there who care about me, who are supporting me, praying for me, carrying me in your thoughts.  Spending time with that awareness is a healing and strengthening thing in its own right.

Even better is when some of you respond to my posts, whether by email or by posting a comment (even if it's only a word or two).  I feel the connection when I'm composing the posts, because I am carrying you in my awareness as I do so, but the responses take it up a notch--a big notch, actually.  Then I have a concrete, tangible experience of connection.  My posts become a dialogue, and not just a monologue dropped into the void of cyberspace. The lagniappe, as they say in New Orleans, is that your responses arrive spread out over time, so I get a whole series of "touches" from my support network. Lovely!

A propos of nothing in particular: 

My sunflower jungle in the back yard.  It makes me smile.

Upcoming schedule: Pre-op testing tomorrow morning early. Surgery Monday @ 8:30 am. Results will be posted as soon as possible. Full pathology report with details re stage of cancer will take about a week after the surgery.

Surgery Date Set

I now have a date and time for my surgery: Monday September 11, 8:30 am. For you locals, it will be at the Miami Valley Hospital Surgery Center (main campus).  Interestingly enough, it is considered minor surgery! (The surgery is minor; the implications, not so much.)  The surgery will include two procedures, the lumpectomy and the placement of a port for the chemo. It is an outpatient procedure.

So all positive thoughts, prayers, good vibes, etc., directed my way between now and then will be most welcome! My surgeon is Dr. Linda Barney--you might pray for her too.

Meanwhile, here's a picture of my nifty new pre-chemo haircut.  I decided I'd rather let my eye get accustomed to baldness in stages, rather than waiting until my hair all starts to fall out in giant clumps.  This whole situation is a shock to the system, but it comprises many individual shocks to the system.  I'm trying to space those out a bit, so they don't all come down on me at once.

An Eventful and Emotionally Dense Time

It has been a while since my last post, I know, but with good reason.  A big chunk of the time was spent at a former dude ranch out in the middle of Grand Teton National Park.  And that trip was bracketed on either end by rather heavy-duty doctor appointments.  We met with the oncologist for the first time about four hours before leaving for Wyoming, and met again with both the oncologist and the surgeon about 36 hours after getting back home.

A heavy-duty time.  The trip to Wyoming had been planned for a year.  It was the fulfillment of a lifelong dream to see a total solar eclipse.  We did, and it was stunning.  Here are a few pix, not of the eclipse itself but of our experience:

Our son Nick making tiny eclipses with his laced fingers (before totality)

Some of our fellow eclipse watchers

The view at our backs as we faced the eclipse

Staring at the sun with naked eyes during totality

The former dude ranch where we were staying is now a campus of the Teton Science School.  The rest of the week involved outings led by science school staff to various parts of Grand Teton National Park and Yellowstone National Park. It was all fabulous, a wonderful time shared with our younger son Nick, daughter-in-law Katey, and two little granddaughters, Josie (3) and Frances (1). 

 

The icing on the cake was a plot by our two sons.  At breakfast on our last full day in Jackson Hole, son Nick poked me and said "Surprise for you"--pointing out the window.  There were older son Peter and grandson Henry walking up to the dining lodge! They had driven over from Salt Lake City to spend the morning with us, guided to our remote spot by info Nick had shared before the week even began.  Gotta love my sweeties!

 

As I told my internist, it was my preferred form of neoadjuvant therapy (that's what they call it when they give you chemo before surgery: neoadjuvant therapy.  I'll take an eclipse and a couple of national parks any day instead).

But bubbling along in my awareness the whole time were the two big decisions I had to make, one for the oncologist (whether to do real neoadjuvant therapy with two strong chemo drugs before surgery, followed by more of the two chemo drugs after, or whether to go for a gentler regimen of surgery first and one chemo drug after) and one for the surgeon (mastectomy vs. lumpectomy).  It definitely gave a distinctive flavor to the eclipse trip.

The problem is, you have to make these decisions with inadequate information.  The definitive information you need about your tumor and its possible spread is only obtained through surgery, so inevitably you won't have it when you have to make the decisions about chemo and surgery.

Plus, my efforts to gain as much information as I could were constrained by the fact that we were way out in the (very beautiful) middle of nowhere, with no cell phone service and only occasional wifi. So there were definite emotional peaks and valleys, not unlike those scratchy Grand Teton peaks we saw whenever we stepped out of our bunkhouse. 

We got home late Saturday evening, had a busy Sunday of church, laundry, grocery shopping, and an evening social engagement (i.e., no down time), and then bright and early Monday morning presented ourselves once again at the oncologist's office, where I had to announce my decision re chemo.  Brief lunch break, then on to the surgeon's office where I had to announce my decision re surgery.  An emotionally loaded day.

An emotionally loaded day which was followed by another.  Yesterday we attended chemo class at the cancer center, full of valuable and useful information but also a deep immersion in the difficult realities that lie ahead. By last night, I was feeling pretty emotionally whipsawed, even battered. Journaling and my tiny angels meditation helped.

So now we have a plan.

I'm going with surgery first, followed by gentler chemo.  And the surgery will be lumpectomy, which means I will also have radiation.  It plots out like this: surgery; 3-4 weeks healing time; 12 weeks of weekly herceptin plus chemo; 3 weeks or so of healing time; 6 weeks of 5 day per week radiation; then continuing with the herceptin for the balance of a full calendar year, and adding a hormone blocking pill that I will take for 5 years.

And I have been told by multiple authoritative persons that I will lose my hair.

Anticipating that, I bought some pretty earrings and a genuine Stetson cowboy hat in Jackson.  If I have to do this, I may as well do it in style.

Update: options to ponder

We met with the oncologist today and were given two treatment options to ponder. One is tried and true, shown to be very effective, but harder on the body. It would involve some heavy duty chemo before surgery, then lighter chemo after. The other option, available to me because of some specific characteristics of my tumor, would involve surgery first, then milder chemo after. He described it as probably just as effective, but can't say for sure because the two approaches have never been tested head to head.

We go back Aug 28 and presumably must announce a decision then. Please pray for me for wisdom and discernment as I ponder my choices.

On the lighter side: I love it that my treatment team consists of a woman surgeon, a male African immigrant nurse practitioner, and a male oncologist who was a nurse before he became a doctor. Take that, neo-Nazis and white supremacists!

Also on the lighter side: while we were driving down Patterson Blvd to the appointment this morning I saw an eagle dive down into the river, catch a fish, and fly away with it. First time I've seen such a thing--and within the city limits too! Felt like a blessing.

St. Raphael Archangel and the tiny angels

I've always resonated powerfully with images, whether visual or verbal.  Maybe it's something innate about my personality; maybe it has to do with growing up Catholic, a culture rich in image and symbol.  Probably both, and more.

I've loved poetry since I was a small child. Growing up, I used to haunt the National Gallery (we lived just outside of DC) and soak in the art.  I still love art in all its forms, visual, verbal, and performed, and connect strongly with it on an intuitive, symbolic level.

So one more thing I've decided to do for myself, as I head into this passage through cancer treatment, is to harness the power of image and symbol on my behalf through visualization.

There's good science behind using visualization in pursuit of specific physical goals.  Athletes can increase both skills and muscle strength with it (see here).  And cancer patients are encouraged to use it for stress relief, to elevate mood, and even to improve immune system functioning, effects that have been scientifically verified (here and here).

So the question inevitably arises: visualize what?  What images or symbols to use?

Many of you may be at least passingly familiar with the widespread cultural meme, "close your eyes and go to your happy place," but that's not what I'm looking for right now.  I'm not looking for a place to escape to, but a way to engage with this journey.

When it comes to cancer, much of the imagery the popular culture offers for engagement strikes me as fundamentally violent: Kick cancer's butt! Let's appoint Biden to head a War on Cancer! You have to fight this!  I can appreciate where these images are coming from, and if they work for you, fine. By all means, use them.  But they don't quite feel like a fit for me.  Fighting and violence are not what I find at the heart of the Gospel, and they are not what resonate within my soul.  I need imagery that conveys that same element of bringing positive strength to bear, without the overtones of war or barroom brawl.

So I sent a request for appropriate imagery down to my inner self, and waited to see what would emerge.

The first thing that bubbled up was, "With their hands they will bear you up, lest you dash your foot against a stone."

That's Psalm 91.  Here's the whole context, as I looked it up later (Psalm 91:1-12):

               You who dwell in the shelter of the Most High,
          who abide in the shadow of the Almighty,
               say to the Lord, "My refuge and fortress,
          my God in whom I trust."
               He will rescue you from the fowler's snare,
          from the destroying plague,
               He will shelter you with his pinions,
          and under his wings you may take refuge;
          his faithfulness is a protecting shield.
               You shall not fear the terror of the night
          nor the arrow that flies by day,
               Not the pestilence that roams in darkness,
          not the plague that ravages at noon.
               Though a thousand fall at your side,
          ten thousand at your right hand,
          near you it shall not come.
               You need only watch;
          the punishment of the wicked you will see.
               Because you have the Lord for your refuge
          and have made the Most High your stronghold,
               no evil shall befall you,
          no affliction come near your tent.
               For he commands his angels with regard to you,
          to guard you wherever you go.
               With their hands they shall support you,
          lest you strike your foot against a stone.         (New American Bible Revised Version)

As I said, I looked up this full quote later, and loved what I found.  Who wouldn't? So many wonderful images of God's strong protection.  But in the moment, when just those last two lines popped into my head, an image popped in with them.

Angels.  Tiny angels.  Tiny microscopic cellular size or even molecular size angels, flowing all throughout my body, serving as focal points through which God's powerful protecting, healing, cleansing love could flow, directly into whatever areas in me needed it most.

I knew instantly that I had my visualization.  Tiny angels.

I've never thought of angels as sort of fluffy celestial puppies, the way they are often depicted in popular culture (I blame the Renaissance artists, at least in part--all those fat little baby cherubs).  Angels are powerful and scary! Or at least profoundly awe-inspiring.  Otherwise, why would the first words out of their mouths in so many scriptural accounts be "Fear not!" or "Do not be afraid!"?

So in my visualization, I'm not seeing lots of celestial puppy dogs or Renaissance cherubs romping around inside me, but something more like lots of tiny firehoses directing God's love precisely where it's needed.

I was quite grateful and satisfied when this imagery emerged, and thought I had what I was looking for.  But God, or my subconscious, or both, was not done yet.

The next morning I popped awake with another image: Raphael.  Raphael as depicted in the Book of Tobit.  Raphael, whose name means "God who heals."

The Book of Tobit is in Catholic and Orthodox bibles.  Alas, it is not in Protestant bibles (sorry, guys--not my fault).  Protestant bibles might include it in the Apocrypha.  But anyway, here's a link to an intro to Tobit, which summarizes the story. And here's one to the story itself.  It's a short read, and one I find delightful in its details.  My bible app classifies it as a "Biblical novella," along with books like Jonah, Esther, and Judith.  It tends to get grouped with the historical books, but probably really belongs with the wisdom literature.  It is a symbolic tale conveying truths in an engaging form.

I'm not going to re-tell the whole story.  You've got the links, read for yourself.  But a few bits to explain Raphael and his role.

Tobit is a righteous man living in exile in Nineveh.  Unlike many of his fellow Jews in exile, he really tries to keep the ways of his Jewish faith in this pagan context, even at considerable risk.  Early in the story, he ends up blind and nearly destitute, but remembers that he has some money on deposit with a distant relative in far-away Media, so he decides to dispatch his only child, his son Tobiah, on a long and potentially dangerous journey to retrieve it.  And the angel Raphael, in the guise of a young kinsman who knows the route to Media, shows up to be Tobiah's companion and guide.

It turns out to be an adventurous journey, and Raphael ends up serving as protector and healer as well as companion and guide.  Footnote: both Tobit and Tobiah are variants of the same name, which means "God is good."

So: Raphael. Companion, guide, protector, healer. Sounds good to me! I'm happy to welcome Raphael into my visualization.

There's a lovely statue of Raphael by the front door of the Abuelo's in Beavercreek:

It's clear from what I've already told you why one of his attributes in art is a walking staff.  To find out why he's carrying a big fish, you'll have to read the story.  The above statue has helped to form in me a pleasant association between Raphael on the one hand and margaritas and guacamole on the other.  Hey, at this point I'll take all the pleasant associations I can get!

Raphael accompanies, protects, and heals.  All those tiny microscopic angels, whom I think of as Raphael's team, flow through my body, protecting, healing and cleansing (washing away the rubbish).  I think this imagery will serve me well.

I even got a St. Raphael medal to wear, to serve as a touchstone to help me touch into this imagery whenever I feel like I need to.

You will notice that Raphael has his walking staff over his shoulder, but this time Tobiah is carrying the big fish. I like it that this is an image not just of Raphael but also of the act of accompaniment. It really helps to know that I am being accompanied on this journey.  A big reason I am grateful for all of you.

I will post a quick update on Friday after we meet with the oncologist.

Quick Update--Good News!

I just got the results from yesterday's biopsies, and the news is as good as it could possibly be.  The area in the right breast is just fibrocystic changes, completely benign, of no further medical interest.  And the lymph node in the left breast is cancer free.  So from what we can know now, we are just dealing with one smallish mass in the left breast that hasn't had time to go anywhere else.  Yay!

Hello again--I have news.

This blog has been dormant for a while, but I have decided to revive it.  It will have a somewhat different focus.

For those of you who don't already know, I have breast cancer.  (And don't feel too bad if you don't already know--I only found out a week ago.)  We are still in the process of refining the diagnosis and designing the treatment plan.  I'd like to use this blog to keep those who are interested updated, and to share whatever reflections occur to me as I move through this experience.

Right now, my intention is to try to post here weekly, or whenever there is significant news to share.  If you want to follow along, here's the easiest way:  Go to the full web version, not just what shows up on a mobile app. (If you are looking at this on a mobile app, you can scroll down to the bottom of the page and find a link for "View web version.") With the "Weird and Wonder-ful" web site up, look to the right, where the column with my profile appears, and scroll down a little.  You will find a box for "Follow by Email." Enter your email address and hit Submit, and that's it.  You should receive each new post in your email inbox whenever I update.

So.  What do we know so far? There is a smallish but definitely cancerous mass in my left breast.  It's a somewhat complicated form of cancer, in that it is rather aggressive but also has some characteristics that make it readily treatable.  More about that when I know more. 

I had two more biopsies yesterday, one on a lymph node on the left, where this cancer is, and one on an area of the right breast that looked odd on the mammogram.  Awaiting results from those, which may begin to trickle in as soon as this afternoon (initial findings of cancer yes-or-no, but not yet the studies that show detailed characteristics of the cancer, if any). 

Given what we know so far, it seems likely I will have some form of treatment with infused medicines for a while before I have surgery, and then again after.  There is a medicine specific for the kind of cancer I have on the left which is not technically considered chemo (very specific to this particular kind of cell; far fewer side effects)--but I may have to have some chemo in addition.  Don't know yet if/when radiation may be in the picture.

The earliest appointment I could get with the oncologist is next Friday, Aug. 18, a week from today. By then full results of the biopsies should be in hand and many questions about the course of treatment can be answered.

The surgeon initially had me scheduled for an operation to implant a port for infusing the meds this coming Tuesday, Aug. 15, but I freaked out a bit about that, since I won't have had my initial meeting with the oncologist until Friday the 18th. My internist agreed with me and contacted the oncologist, who contacted the surgeon. Result: procedure canceled for now, to be rescheduled if necessary (probably will be) after we get back from our trip to Jackson Hole to see the eclipse.

Yes, we are going to Jackson Hole to see the eclipse and play around a bit in Grand Teton and Yellowstone National Parks! Nick and Katey and their little girls Josie and Frances will be joining us.  A week immersed in family and spectacular natural wonders seems like very good medicine to me, and all three docs are copacetic with it.  So it's a go.

Reflections so far: Ladies, don't neglect your annual mammograms! Your risk only continues to rise with age, so you never outgrow the need for them.  All this was detected on my regular annual mammo. And because I've had my mammos at the same place for years, we know that none of this was there last year.

As the initial shock has started to wear off, I've had a few good crying spells.  I try to just let them happen when they want to.  In between, I have really felt surprisingly calm (not to be confused with "completely calm"!). I've been mostly able to just stay in the present, living the experience hour by hour and day by day, without getting caught up in anticipation and dread.  That has felt like a grace, a gift, and I am grateful.

I have had wonderful support from Michael, from friends, from my internist and the surgeon he referred me to, from the folks at the breast center who did yesterday's biopsies.  I do feel cared for, and it helps immensely.

It occurred to me yesterday that one powerful thing I could do for myself would be to keep a feelings journal and commit to writing in it faithfully, as close to daily as possible.  Fortunately, I had the perfect tool at hand.  At just this time last year, Peter and Cynthia and Lucy and Henry gave me as a 70th birthday present a blank journal made by a crafter who sells them at the fabulous farmer's market in the park in Salt Lake City that we have visited with them.  The journals are made from old books, with the vintage covers retained plus about twenty pages or so of the book, the rest being filled out with new blank journaling pages.

Mine is made from a 1935 hymnal called "Songs of Praise," published in Springfield, Missouri, though it's unclear what if any denomination it was published for.  I know a few of the hymns in those opening pages, but most are new to me.  Each of my sweeties inscribed the journal to me--wonderful, loving messages.

As I noted in my entry yesterday, I love it that my journal for this passage in my life is called "Songs of Praise." There is always some beauty offering itself to us, asking to be apprehended and absorbed. Therefore there are always grounds for praise. Always. No matter what.