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.

 

 

 

 

 

 

 

 

 

Pain in the Butt

I think it’s fair to say that having breast cancer–actually, any cancer–actually, any chronic disease–is a pain in the ass.  In my case, it seems also to be the literal truth.

Since a dramatic auto accident in my late 20’s, I’ve totaled three additional cars (two of these accidents were Not My Fault).  No one got hurt in these crashes but me, and luckily mine were only soft tissue injuries–no broken bones, concussions, damaged organs, or blood loss.   Also, during the 24 years I lived in Boston, I was rear-ended at least eight times–once when I was sitting in a parked car!  I’ve become an expert in dealing with wrenched muscles and sinews.   It’s a lifetime challenge to keep the body’s structure reasonably in place and functional once those muscle and bone attachments get jerked around (they are not overly resilient).  If I don’t regularly stretch, strengthen the supporting muscles and get frequent therapeutic massages, even years after my last injury, the scaffolding gets stiff and rickety very quickly.

I am a huge fan of therapeutic massage.  I’ve been getting massages from Kevin for at least 12 years now.  It took years before Kevin could liberate my whip-lashed neck, and I’m very grateful to him for that.

Over the decades (wow! decades!) I’ve experimented with many exercise regimens to keep me going.  I’ve dropped out of most of them either because of scheduling conflicts, expense, or just plain boredom.  About two and a half years ago (pre-Breast Cancer Conciousness) I discovered that Pilates is the one exercise routine I look forward to.  It helps that my Pilates instructor, Betsy Ogden, is also a physical therapist, so she modifies my routine to accommodate whatever ache or pain I show up with.  I even have my own Pilates reformer at home so I can keep the training going between appointments.  I love Pilates!

Six weeks ago, though, Betsy sent me home at the beginning of our session.  I had an unfamiliar type of pain, located precisely on my sacrum, that felt hot and stabbing.  The surrounding tissue was swollen, too.  Clearly, there was some inflammation going on.  When I first noticed this new pain–in the middle of the night, of course–my first thought was “Yikes! Has the cancer metastasized to my bones?”  I dismissed that line of thinking because I didn’t want it to be true.  I was sure Betsy would show me a maneuver on the Pilates reformer to alleviate the discomfort.  It was a bit unnerving to learn she couldn’t help.

I saw Brendan the next day for my weekly acupuncture treatment.  He reminded me that our bodies store latent heat in several places, including in the holes in our bones (referred to as “foramina” in Western anatomy, “liao” in Chinese medicine).  We all have foramina, especially in our skulls, scapulae, and pelvis.  These foramina allow for nerves and blood vessels to pass through them.  The sacrum bone has 8 holes/liaos.  These liaos are so important in Chinese medicine that each one is a separate acupuncture point on the Bladder Meridian.  There’s a pulse quality on the chi position of the right wrist that indicates metastasis.  Brendan and I check it often, and that quality has yet to manifest.  We concluded that the sacrum pain was part of the healing process, the last release of latent heat before I could defecate or urinate the fire toxins out.

Common Latent Heat

Here’s the simple explanation of the Chinese concept of common “latent heat.”  When an external pathogen (akin to bacterial, fungal or viral infections) enters a body with weak Kidney Qi (usually from overwork or an intemperate lifestyle–which sums up how most of us conduct our lives!), or when an especially virulent pathogenic factor attacks and overwhelms an otherwise healthy defense system, the body’s energy pathways try to protect the vital organs by shunting the pathogens into storage areas until the body’s wei qi (defensive qi) becomes strong enough to eject it (usually by opening the pores and sweating it out).

Unresolved (not sweated, vomited or urinated or defecated out) pathogenic factors, usually introduced into the body by Wind, can cause a myriad of chronic diseases.  These p.f.’s get stored in large joints–elbows, shoulders, knees, hips.  Other storage areas are the foramina and the teeth.  Lingering smoldering heat eventually becomes full Heat and wreaks havoc in our bodies in the forms of arthritis, autoimmune diseases, AIDS, cancer, and other diseases.

Kiiko Matsumoto, one of my classical Chinese Medicine teachers (Japanese style), tells her students that, no matter what a patient comes in for, if he/she has a history of sinusitis, treat that first–pathogens lurking in the sinus cavities eventually consume fluids in the body and lead to joint pain and other inflammatory conditions.  Sinusitis, even between flare-ups, sabotages the body’s ability to heal.

Chinese medicine does not recognize the “common cold”.  Instead, it describes a progression of symptoms that follow the penetration of pathogenic factors, from the initial superficial level (scratchy throat, stiff neck, slight chills) to the deepest level (fever, body aches, juicy cough with thick green phlegm, gastrointestinal distress).  The first formulas taught in Chinese herbal medicine classes deal with treating these “Wind-Cold” and “Wind-Heat” conditions:  we learn how to identify which stage the patient is at as the pathogen travels deeper into the interior, whether the wind-cold pathogen has begun to transform into wind-heat, and whether the wind-heat is still exterior, interior, or somewhere in between.  Each stage, and each constellation of symptoms, requires a different formula and maybe some modifications.  Frankly, when I was studying all this, I thought it was a waste of time–who would take time off from work to make an appointment, pay out of pocket for the office visit, and then take these herbs (which do not work quickly) when the local drug store offers fast acting and cheap symptom relief?  We don’t huddle under blankets and sweat it out anymore.

So, probably for most of my life, with each head cold or flu bout, my body’s been sweeping these pathogenic factors under the rug, then into the closet, and then finally into my bony crevasses.

To be clear, I doubt latent heat itself directly causes cancer, but it’s probably a strong co-factor.  In truth, few cancers have a clear origin.  Latent heat does create an ideal terrain for tumor growth, though, and perhaps adds complications to treatment.

Since my diagnosis last March 2012, Brendan and I have been clearing heat out of my meridians with herbs, acupuncture, and diet.  It’s only been recently that this heat has been reduced to a small amount of residual heat in my Large Intestine meridian, the final area of concentration before clearing takes place.  Along the way I’ve enjoyed the benefit of reduced joint pain, and even an old scar from a Caesarian section, which has been tender and painful off and on since the original incision, finally calmed down.

Latent Heat Due to Cancer

Cancer, by definition in Chinese medicine, is heat–specifically, fire toxins.  Sometimes the body is able to contain the toxins by surrounding them with fat or fluids (yin, therefore cooling, substances) or by packing the toxins into bony crevasses and liaos.  Bones and teeth are also yin substances.  One of the two principle treatment strategies for cancer in classical Chinese medicine is to deliberately induce latency when the person is too weak to clear out the toxins.  It’s a stopgap strategy that buys time for the patient to build up strength and the immune system or at to least get his/her affairs in order.  Our body does this, too, by containing the fire toxins within yin substances.

Therefore, my sacrum pain clearly relates to the bones releasing the latent heat.  The question becomes, is this part of the healing process (releasing the garden variety latent heat) or is it metastasis.  It turns out that in my case, both are probably true.

To be continued…

 

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.

It Takes a Village

I really like the surgeon I put in charge of the biomedical part of my healing journey.  Kari Rosenkrantz is tall, gorgeous, unflappable, and funny, and she came highly recommended by people John and I respect.  My Pilates teacher, who had a lumpectomy and radiation a few years ago, shares my admiration.  Betsy thinks Kari is a rock star, and I agree, especially when she strides into the examination room wearing 4 inch high heels (I’m hoping never to know first hand if she operates wearing these shoes).

Kari has been supportive from the very first, expressing her respect for Chinese medicine even while freely admitting she has no knowledge of anyone using it as the primary treatment for breast cancer.  Her open mind seems to be a rarity in cancer care world.

I’m sure Kari knows that my complete recovery from cancer in the coming months will not end her career.  Although I am not the first person to take the Chinese medicine route to treat cancer, there are precious few of us compared to all the others who opt for surgery, radiation treatment, and/or chemotherapy.

Why is this?  Mostly because biomedical treatment of cancer seems to be the only option that doesn’t look like quackery–thanks in part, no doubt, to biomedicine’s focused campaign to discredit any practice that isn’t within its sphere of influence.  Maybe there is a conspiracy to squash the competition so that the cancer centers (and Big Pharma) can rake in the big bucks, but, if there is, it’s taking place at a very high level.  I’ve only experienced genuine concern and caring from the people I’ve dealt with at the cancer center.  They sincerely believe they offer the best and only hope for their cancer patients.  Still, I’m just one person opting out of the cancer center’s full array of services, so I pose no threat to anyone’s assumptions or jobs.

During the early weeks of this journey, as I underwent all kinds of diagnostic procedures, I also had a mandatory session with the cancer center’s social worker.  She laid out a menu of the center’s services, ranging from gasoline vouchers, wig fittings, lessons in tying up head scarves, make-up tips, art therapy, yoga/tai chi/meditation classes, financial assistance, psychological counseling…  Clearly, breast cancer patients at this center get excellent support at multiple levels.   Instead of feeling supported and cared for, though, I felt the hidden message was “girl, you’re in big trouble now.  We’re taking extra special care of you because your diagnosis is so very dire.”  A fear-mongering fist in a pink velvet glove.

When Jeffrey Yuen teaches about treating cancer with classical Chinese medicine, he warns his students that fear creates the greatest barriers to successful healing.

First come the practitioner’s fear:  Have I enough courage and confidence to keep the patient’s trust during all the phases of treatment, especially during the healing crisis?  Are my skills and training adequate?  What if I misinterpret the pulses and give the wrong treatment?  What if I miss something?  Will I harm this patient?  Will the family sue me?  Will the AMA or the American Cancer Society crush me?

The patient, too, has to overcome doubts and fears:  Is this the right choice?  Does this practitioner have the skills I need?  Can I sustain my confidence in my choices for as long as I need to?  How will I handle the final phase of treatment, when the tumors enlarge and possibly become painful, and the healing crisis may turn out to be prolonged and unpleasant?  Can I afford the time and money for weekly treatments and herbs, possibly for several years?

Even when the patient feels strongly that Chinese medicine is the best way to go, her friends and loved ones need to be convinced.   Few people have heard of successful cancer treatment using Chinese medicine, so there’s an understandable concern that the cancer patient is following an uncharted, unproven path.  It’s very difficult for patients to constantly defend their choices to spouses, parents, children and friends whose fears make them question the patients’ judgment.  Even casual acquaintances and total strangers feel free to tell cautionary tales of people dying of cancer for lack of “real” medical care.  Without very strong inner resources to resist the concerns of the people they care about, cancer patients often yield to their family and friends’ fears and switch to Western biomedical treatment.

In my case, no one can suggest that I am under the spell of a charismatic charlatan who has clouded my thinking or preyed on my ignorance.  I worked as a staff acupuncturist and herbalist for six years in a Boston AIDS clinic in the mid 1990’s, long before the so-called “cocktails” were around, and I know how effective this medicine was for our patients there.  My knowledge and experience tell me I’ve chosen what’s best for me.

When deciding where to get classical Chinese medical treatment, I picked the clinicians at Jade Mountain Wellness in Burlington over other qualified practitioners because I liked the idea of a team.  Brendan Kelly and his wife Liz Geran both took the same classes on cancer treatment that I had attended, and both were still studying Chinese herbalism, on a monthly basis, with Jeffrey Yuen.  Brendan happened to answer the phone the day I called for the first appointment–I would have been fine seeing Liz instead.  Because of the dearth of nearby colleagues trained in classical Chinese medicine to offer clinical supervision, I assumed that Brendan would consult with Jeffrey if need be.  At the very least, Brendan has Liz to help him with any private fears and doubts he might feel from time to time, and I imagine they share ideas and experiences (and class notes?).

My family and friends support me now.  In the early months I had to defend my choices to a few relatives and friends; I chose to stress Chinese medicine’s millenia of experience in treating “accumulations” and “fire toxins,” rather than make any case against biomedicine.  John and Judi have supported me completely from the beginning.  Whatever fears they may have they’ve kept to themselves.

John is a rock.  When last June’s MRI showed that one of my tumors had grown significantly, he didn’t hesitate a second before saying,”That’s great news!”  I have overheard John tell a couple of relatives that I wouldn’t be true to myself if I were to take any other path and that he respects that. John’s also an effective gatekeeper against those who feel compelled to share why they think I’m making a huge mistake.  I know this isn’t easy for him.  Even after 39 years of marriage, he still wants me around!  We have made plans to travel to far-flung places after he retires, and he’s optimistic about that, except occasionally during the wee hours of the night. His health, which has always been the exemplary health of an athlete, has started to suffer in response to his stress and worry.  Fortunately, he is able to reach out to others for sympathy and support when he needs it.  A few “breast cancer husbands” have taken him under their wings (those dear angelic guys!).  My children developed their own support networks.  It does take a village, if not a small city, to manage this disease!

Any kind of cancer treatment is hard.  Choosing the road less taken has special challenges.  In many ways, it would be easier to step back on the cancer center’s conveyor belt and let the biomedical experts take charge.  But surgery, radiation, and chemotherapy cannot alter the terrain that allowed the cancer to develop in the first place.  This cancer diagnosis has given me the opportunity and the responsibility to examine the unfinished business of my life, to discover where unhealed wounds exist that I need to touch and make whole, and to teach my heart how to truly sing.  I need peace and freedom to go inward as well as safety and guidance to process what I find.

My friends and loved ones give me sanctuary and listen to my ramblings without judgment.  They also feed me when I’m too tired to cook, give me things to laugh about when I get down, sometimes weed my gardens, and keep me supplied with great reads when I need to take a mental vacation from this work.  John provides the necessary financial support that gives me the luxury of time and acupuncture treatments and herbs (which are not covered by our health insurance–how ironic that the biomedicine route would be cheaper for us).  How lucky I am!  Thank you, all.

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.