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.