Pain in the Butt, Part 2

After trying everything that’s worked in the past to clear up the pain in my low back, with no real success, I decided to take a more aggressive approach.  I lined up a month’s worth of daily treatments, a different modality for each day:  cranial sacral work, physical therapy, Pilates, acupuncture, gua sha and massage.  Nothing was helping very much, but I had high hopes.  Both the cranial sacral practitioner (who is a physical therapist) and my physical therapist (Betsy Ogden, who is also my Pilates teacher), said my pelvis and sacrum were way out whack (auto accidents, pregnancies, large uterine fibroid–take your pick of etiologies).

The last day of week three was massage with Kevin.  As usual, the first part of the massage was wonderful.  But when I tried to turn over into the prone position, I felt a shooting pain from my hip down my leg and simply couldn’t manage the turn.  So I got dressed (with difficulty), went home, cancelled the rest of the appointments, and booked an appointment with a primary care physician.  I thought I had sciatica, but I wanted an MRI to get, so to speak, to the bottom of the problem.

I had never met this doctor before (my usual one moved away a month ago).  I picked Patrick Francis from the list because, in addition to being an internist, he also practices preventative care and “narrative medicine.”  I liked him!  He, too, thought I had periformis syndrome, which produces sciatic pain, but agreed that an MRI was called for due to my cancer history.

By lucky chance, the sciatic pain vanished almost as soon as I finished up with the MRI.  Like the bruise Katy gave me two years ago, it served as a metaphorical wake up call to a more serious problem.  The MRI revealed, among other things, that I had “innumerable lesions” in my vertebrae, sacrum and marrow consistent with metastasis.

Oops.

Such an ugly word, “metastasis.”  Sounded aloud, the word hisses like a snake, and the mouth forms a sneer.  The Sorting Hat just put me in Slytherin, and I wanted to be in Gryffindor House!

The time had come to get my complementary medicine team involved.  Dr. Francis ordered a chest x-ray and blood panels, and he gave me referrals to a radiation oncologist (Anna Fariss) and to the oncologist I had interviewed two years ago (Letha Mills).  In addition to the chest x-ray (lungs are still clear!), I’ve had a CT simulation scan as preliminary to radiation therapy, a PET scan (which showed that my liver is also clear of cancer), and tattoos to mark the spots for radiation (just freckles, alas–no dragons or hearts).  I’m on day 3 of 10 days of radiation therapy.  After, Letha will put me on hormonal therapy to drive estrogen out of my body.  Kari, my surgeon, called to express her concern and to answer any questions I might have.  When I asked her when I should schedule a mastectomy, she told me that the horses were already out of the barn and my breast tumors were the least of my problems now.

Not a single soul has uttered an “I told you so” or even hinted that I got myself into this fix by choosing classical Chinese medical treatment.  One nurse (clearly a Bosox fan) wondered why I’d waited until “the bottom of the ninth” to see the oncologist again, but the line was delivered with a twinkle in her eye, and I didn’t feel judged at all.

I’ve been in bit of a whirlwind these past two weeks.  I have compound fractures in several vertebrae and it looks like I’m in peril of breaking a hip or two, so I’m pretty happy with the full court press (sticking to sports metaphors, but I have degrees from Duke and UNC-Chapel Hill, so I prefer to talk hoops).  Also, it is alarming how quickly the pain increased (even before the MRI), so I’m looking forward for the radiation therapy’s fire magic, which is supposed to ease the discomfort.  Letha assures me I’ll be able to resume all my normal activities (gardening, kayaking, traveling) in the future.

I plan to get back to classical Chinese medicine treatment with Brendan as soon as possible.  Biomedicine has been a godsend to me, but I still believe Chinese medicine will drive the cancer away for good, and maybe I won’t ever need a mastectomy.  Metastasis can be part of the healing crisis.  It would be crazy to forego biomedical treatment in light of the damage to my bones, but my body’s so darn close to kicking out the fire toxins (which radiation will add to, no doubt), that I want to continue on this path once the metastasis is stabilized.

Although it turns out that Slytherin isn’t so bad, I miss my Gryffindor friends.

 

 

 

 

 

 

 

 

 

November’s Ultrasound

I had an ultrasound on 11/11/13.  Both John and Judi went with me.  It’s taken me a while to write about this scan because the experience was upsetting and because I wasn’t happy with the findings and needed time to process both issues.  (Oh yes, then there were the holidays, some travel, and then another health development…)

The procedure itself was upsetting because I felt the radiologic technologist violated professional boundaries with her comments and questions.  I’m over that now, but it took a lot of journaling and conversations with Judi and John to calm down.

After all, what really matters is what the R.T. found out and the radiologist on call verified:

Tumor #1 (The Fish), is now 37x27x33 mm (from June’s MRI measurement of 28x27x34 mm).  It looks more like a star than a fish now. This is the ductile tumor.

Tumor #2 (The Ghost), has also changed shape.  It’s almost completely spherical, and it’s 15 mm (from 9x8x11 in June).  It’s rounder than it’s earlier shape.  Up until this ultrasound, it had been stable in size and shape.  I wonder if the ghost busting got this lobular tumor to budge.

Tumor enlargement comes before the healing crisis, so I remained confident that I was on track for the cancer clearing phase of treatment.  There’s a pulse quality on the right wrist that indicates metastasis, and neither Brendan nor I have detected this quality.

When she called to follow up on this ultrasound, Kari (my surgeon) told me that she was worried about me but would continue to support my treatment plan.  I reminded her that Tumor #1 started out at 33 mm, so the net growth from March 2012 to November 2013 is approximately 4 mm.  Tumor #2 was 14 mm in March 2012 and is now only 1 mm larger.  We agreed that, given the slow growth overall, I could skip the March 2014 ultrasound and not measure again until the annual MRI in June, especially since my lymph nodes were still clear at the 2013 MRI.

In the meantime, I needed to deal with some persistent low back pain.

Results are in

I haven’t actually seen the MRI report, but Kari, my surgeon, emailed me the executive summary yesterday:  the smaller tumor remains the same size; the larger one, which was 21-23 mm in February, is now 34 mm (approximately its size at the time of diagnosis).  The lymph nodes all look normal.

I have to admit I had some moments of doubt when I got Kari’s email.  Of course.  But they really were just moments.  Doubt morphed into respect when I remembered that Brendan changed his treatment strategy about six weeks ago to precipitate this healing crisis because he judged, from my pulses and presentation, that I was strong enough to clear the Fire Toxins.  We were expecting the tumors to grow.  Still, having my Heart Vaporize the Phlegm (spontaneous remission) would have been so much easier (though less interesting, I suppose, as blog material).

Subjectively, I’ve known that The Fish is growing.  It’s now closer to the skin and seems much bigger than it was.  It does seem softer, though.  Biomedicine cannot measure the density of a tumor, just it’s size.

The smaller tumor, The Ghost, has remained fairly stable in size.  I can’t speak for its probable density, since I can’t palpate it.  I’ve been puzzling over why the treatments haven’t had the same impact on this tumor as they have on the The Fish.  After reviewing all my class notes, I think I now have the answer.

Last summer I attended Jeffrey Yuen’s annual retreat for his advanced students.  These retreats aren’t focused on one topic like his regular seminars.  Instead, he addresses concerns and questions that arise when experienced practitioners want to go deeper into their understanding of classical Chinese medicine.  One of the days was devoted to questions about the seldom used secondary acupuncture vessels known as the Divergent Channels.  Divergent Channel treatments focus on serious chronic diseases.  Divergent Channel treatments require nuanced pulse diagnostic and needling techniques that are difficult to master.  Since cancer is clearly a serious chronic disease, Jeffrey used me as the class’s case study.

In the course of interviewing me, taking my pulses, and working out a possible treatment strategy, Jeffrey talked to us about breast cancer in general.  He said that ductal tumors are problems of the jin-ye fluids, especially the ye (don’t worry about that) and are usually related to the Triple Heater and Small Intestine (Fire organs, the yang aspects of the yin Pericardium and Heart).  In his experience, these tumors resolve faster than lobular tumors, which he believes arise from Dampness and Phlegm, terrains that create the most stubborn pathological states.  The Fish is ductile, The Ghost is lobular.  That explains why one tumor is responding more quickly to the treatments than the other.

(A few months ago, for a different reason, I started a 100 day Daoist regimen for exorcising ghosts.  More on this later.)

Now that I have proof that the healing crisis is upon me, I need to adhere more closely to my diet, exercise (gotta get back to qigong), and detox bath regimens.   I don’t want to give those cancer cells any excuses to linger.  “Get off my plane!”

It looks like I might have to go through a second healing crisis down the road to clear the lobular tumor, unless my Heart can vaporize The Ghost’s Phlegm.  All things are possible!

Prognosis

The MRI a couple of days ago went smoothly.  For one thing, I’m not claustrophobic, and the other thing is, I kind of enjoy the clanging and banging sounds when I have ear plugs to blunt the noise level.  I spend the 40 minutes or so trying to discern a rhythm and make up songs to fit, a bit like composing melodies to accompany jack hammers.  This time I didn’t even mind the IV (for sending contrast dye into my veins).  The best part, of course, was the post MRI celebratory lunch with John, Judi, and her husband Stan.

I don’t know why I felt the need to celebrate, except that an annual MRI represents a milestone of sorts (may there be many more in my future).

Unlike ultrasound scans, which give feedback in real time, MRI pictures need to be analyzed, then the report is sent to the surgeon before I get to see it.  I don’t remember from last year what the time lag is, but I think it’s about a week.

In truth, I’m not sure what results to hope for.  No matter what I learn about the size of the tumors, interpretation will be open.

The general prognosis for the Clearing Fire Toxins stage of cancer treatment in Chinese medicine goes like this:  as the fire toxins cool down and lose strength, all the cancer cells in the tumor are forced to mature without reproducing, and then the mature cells die because their environment no longer supports them.  The body mops up the dead cells and excretes them out through increased urine, feces, sweat, and/or (not this one, please) skin eruptions.  The expected healing crisis is tumor enlargement followed by some personal hygiene problems for a while.

So, although it’s been gratifying and reassuring that my tumors have been shrinking, it won’t upset me to learn they are growing.  The surgeon has been warned.

Yet, this will be the time when I’ll need a lot of support and self-confidence to keep from freaking out that the tumors are growing oh my god are they metastasizing am I doomed?

“Do I contradict myself? Very well, then, I contradict myself; I am large — I contain multitudes.”  (Hmm, did Walt Whitman have cancer, too?)

If the tumors continue to shrink, that’s also just fine.  That could indicate a more relaxed manifestation of spontaneous remission: “The Heart Vaporizing Phlegm in Slo-Mo”  (my contribution to Chinese medical metaphors).  There’s no explanation for this in Chinese medicine to my knowledge, but I would guess that my wei qi (immune system) is nibbling away at the cancer cells.  Or, it could also mean that my cancer cells have had a change of heart and are giving up their rebellious ways and returning to normal, thereby achieving a different type of cell maturity, so to speak.  (That’s what I’ve been visualizing.)

Should it turn out that nothing’s changed, that outcome would provide me with another great opportunity to practice the virtue of patience.

So, each of the possible MRI results (larger, smaller, the same) could be a winner.

The envelope, please.

Retreat, Part 1

My insurance company pays for one MRI a year, and the next one is coming up on June 24.  I’ve had two ultrasounds in the interim, each one has shown a progressive shrinking of the tumors, so this MRI shouldn’t be such a big deal.  But I’ve been a student for a good part of my life, and I still get anxious before big exams.

I’m preparing for this exam by 1) maintaining the regimen I established last year (I’ll outline this later), 2) following Sun Si-Miao’s 100 day exorcism program to expel “Worms/Ghosts” (definitely more on this later), and 3) gardening like my life depends on it (turns out, it just might, gardening being a major source of joy for me).

I also plan to use the next 4 weeks to reflect on this past year’s events, both external and internal.  How much “history” gets covered before the Big Day depends on the June weather (remember the gardening part of the program–if it’s sunny, I’ll be outside).

It seems I was in constant motion, physically and emotionally, most of April, 2012.  So many hoops to jump through at the medical center, so many health care providers to consult with, and so much information to gather up and evaluate.

By the end of the month, I felt overwhelmed by the complexity of the changes and the choices I needed to make in my life.  So, like Henry David Thoreau, I went to the woods to learn how to live deliberately.  On May Day I packed the car up with my dog, food, clothes, books, 3 x 5 cards, class notes, and altar materials, and drove an hour to the Wildlife Conservation Trust in southern New Hampshire.  I had rented a house there for a week in the middle of nearly 3000 acres of conserved woodland.

WCT isn’t terribly remote, but the houses there are secluded, cell phone service mostly non-existent, and the forest pretty deserted during what we in Vermont/New Hampshire call “mud season.”  Caretakers, a husband and wife team, live on Trust property and share a party line with the rental houses.  For me, it was the ideal blend of solitude and reassurance. I needed time to figure things out sans distractions.

My goals for the week:

1.  Plan a diet that would nourish me and not the cancer, be varied and palatable enough to sustain for what might be a long time, and would support my treatment goals (at that stage, to dry Dampness and to cool Heat in the Stomach).

2.  Teach myself qigong from videos, especially guolin qigong, a form developed to treat cancer and other chronic illnesses.

3.  Identify the stressors in my life and figure out how to minimize them and/or change my response to stress.

4.  Take stock of whatever activities and beings make my heart sing and rearrange my life to do/see more of that/them.

5.  Call upon, though meditation, ritual, and journaling, whatever inner resources I might have to see me through this crisis.

It rained most days, sometimes hard.  The woods, which were already pretty wet from the spring snow melt, became downright boggy. Katy and I ventured out every morning, anyway, with map and compass (trail maintenance and markers neglected in recent years).  We explored a different trail each day, bushwhacking our way through the woods and discovering old cellar holes and farm walls long abandoned and forested over, waterfalls, and vernal pools.  Our only encounter with wildlife involved a couple of nesting geese overreacting to our presence on the other side of their pond (Katy and I fled).

I have a glitch in my brain, no doubt from one or more auto accidents, that gives me vertigo when I cross streams that have turbulent water, to the point that sometimes I get stuck mid-stream, too flustered and disoriented to move, even in shallow water. I usually walk along busy paths, so I’d always found help when I needed it.  Near the end of a three hour loop on the second day of my retreat, I came to a small stream with rushing water almost 18 inches deep.  Big trouble.  I couldn’t turn around to get home, having engaged in some exciting mud sliding down a steep ravine just a while back where the log “bridge” was too slick to negotiate.  Also, I didn’t have the energy for another three hours of hiking, even if I could have scrambled up Mud Mountain.  My only real option was to cross.  I took a few (or a hundred) calming breaths before devising a plan to make my own stepping stone path across the brook.  After twenty minutes of searching for large rocks, prying them out of the earth, and lugging them to the brook, I managed to build a serviceable, though underwater, path to the other side.  I crossed the torrent with two sturdy sticks to support me against the inevitable vertigo.  Luckily the plan worked, because there would be no helpful hiker to rescue me.

I mention this episode because I had brought, in addition to a stack of books on breast cancer and on Chinese dietetics, a few books to read for pleasure.  Cheryl Strayed’s Wild was one of them.  Cheryl’s solo wilderness trek across the Pacific Crest Trail taught her who she is and what she’s made of.  I hadn’t intended for this retreat to be that kind of challenge, but I did feel a small measure of triumph when I crossed that blessed creek!  I believe it’s true that, each time you refuse to let fear stop you, your courage gathers strength for the next challenge (like video games in which you get more powerful with each victory?).    I made it back to my woodland house muddy, thoroughly soaked, and exhausted, but also exhilarated and lighthearted.  Crossing the brook that day quelled a sense of helplessness that had been growing in me faster than my tumors.

Quick Update

It turns out that changing your life can take up a lot of time, so writing here got shoved to the bottom of the list. Now that some of the dust has settled on the (re)construction site, I’m ready to resume this story.

Just so you know, the tumors are retreating. Tumor 1 (which Judi nicknamed “The Fish” because of its shape) was 32-34 mm and Tumor 2 (“The Ghost”) was 14 mm at the time of diagnosis (March 31, 2012).  Last week’s ultrasound roughly estimated that The Fish is now 21-23 mm (and the length of its spicules about half) and The Ghost is 12-13 mm.

My surgeon, who has to authorize my ultrasounds and MRI’s, met with me a week later with huge smiles on her face.  The best she had hoped for me, she confessed, was for the tumors to remain stable.  She’d never heard of tumors shrinking before, nor could she imagine I’d have such dramatic results so quickly.

The next look-see will be an MRI, which gives a more accurate measurement, in late June.

In the meantime, I’ll fill in what’s been going on since my last post, almost 6 months ago.

Down the Rabbit Hole

Five months ago, on March 24th, while examining a bruise on my right breast (given to me–the bruise, that is–by my very large and playful and obviously undisciplined Rhodesian ridgeback), I felt a lump the size of a grape next to the bruise.  Surely this was a hematoma?  Yet the lump itself wasn’t discolored, and it seemed too rigid to be a mass of blood.  This was on a Saturday night.   On Sunday I got up early (I hadn’t slept much, anyway) to find and review my class notes on breast cancer.  I also considered, for sanity’s sake, that the lump could be benign.  Finally, I told John (my husband of 37 years) and Judi (my best friend) about my discovery.  Sunday was a long day for all of us.

My class notes (see Welcome page) reminded me that hormonal cancers express in life cycles of 7 years (for women) and 8 years (for men).  I am 63, at the beginning of my 9th life cycle, so no surprise there.  The notes outlined the typical etiology of the disease and discussed risk factors and symptoms that, in the main, described my case.  This increased my confidence that Chinese medicine has a handle on this disease.  (And yes, I did wonder how I’d managed to ignore warning bells during class.  And how I had not noticed a lump that large before?!  Ah, denial–so much more than a river in Egypt.)

By Monday I was ready to face, well, whatever.  First, a quick solo trip to my primary care provider’s office to see a nurse practitioner, who assured me the lump didn’t have to be cancer but got me an appointment right away at the hospital’s cancer center.  Judi, a fierce and loyal friend, then stepped onto the conveyer belt with me as I went from one end of the hospital to the other.  She took notes, asked great questions, and dared anyone to talk down to me (one resident tried, but he was no match for her).  The tour began with The Kind Nurse in Charge of Keeping You Calm and Focused While She Outlined What Would Happen Over the Next Few Days, then moved on to a series of diagnostic suites for mammography, ultrasound, biopsy, and MRI.   The radiologist pushed the pathologist to read the biopsy slides asap.  Before noon on Friday, the radiologist phoned to say I had two tumors, both malignant and invasive, one ductal and the other lobular.  It was quite a week.

The following Monday John and I went to the medical center for a second MRI (the “real one”–the first one being for research only).  We were turned away (the scheduling nurse had given me the wrong date–the only glitch so far) and told to return Tuesday evening.  After the MRI on Tuesday, I needed a break!  I had already signed up for a four-day class on Chinese medicine (not cancer related) in Asheville, NC, so I left Vermont and headed south Wednesday morning.

Back to the hospital on Monday, April 9, for a chest x-ray and blood test to determine whether the cancer had metastasized (happily, it hadn’t) before meeting with the surgeon.  First,the surgeon explained that she considered my cancer, due to the size of the larger lump, to be Stage II.  But she also thought that blood from the bruise may have seeped into the tumor, enlarging it enough to create a palpable mass (good dog!).  She recommended two lumpectomies and a sentinel node biopsy, followed by radiation treatment, and she could schedule the surgery for two days hence.  John was there and also took notes and asked questions.  The surgeon couldn’t have been more caring and patient with us.  Somehow she kept a straight face, not even sputtering in disbelief, when I explained I was going to Seattle in a few weeks to play with my grandson and would use the intervening time to (this just popped into my head unbidden) consult with my waterfall oracles.  I’d get back to her in a month about when or whether I was ready for surgery.

The next day I met with an acupuncturist in Burlington, VT who had attended the same cancer classes I had taken with Jeffrey Yuen.  I didn’t actually know him, but he had the credentials I was looking for.  When a waterfall oracle appeared to me, moments before this first appointment, I knew I’d found the right person for the job.  To be continued…