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.