How Things Stand Now

The “Bone Metastasis/Radiation/Recovery” leg of this journey (February through August) demanded all my time and energy. During this period I discovered unmined veins full of life lessons for me to extract and process, and I feel richer now for the experience. Seriously!

The truly difficult part comes now:  translating the events of the past six months or so into human language. I’m working on it, but I’ll be enlisting poets and visionaries to help me out.

As soon as the radiation treatments ended in March, I began anti-estrogen (aromatase inhibitor) therapy (one little pill a day). Once a month I get an injection of xgeva (denosumab) to rebuild my riddled bones. I stopped taking opiate pain pills as soon as possible so I could drive a car again.

There are two tumor markers in the blood for my kinds of breast cancer. The tumor marker numbers have plunged dramatically since March, and, for the past two months, these markers’ values have indicated remission. A PET CT scan in July showed no metastatic activity in my bones. Also, the original tumors are no longer palpable.

Remission! Reprieve! I’m thrilled and thankful that the biomedical treatments have worked so well and so quickly.

Unfortunately, to maintain this state of remission I’ll have to take aromatase inhibitor drugs and get periodic xgeva shots for years to come. Both cause joint pain, fatigue, and nausea. I’ve adapted to these adverse effects, but there are also accumulative adverse effects that may kick in down the road.  Xgeva can cause bone necrosis in the jaw, and aromatase inhibitors can weaken the bones, perpetuating the need for xgeva. Aromatase inhibitors lose efficacy over time (3 to 5 years would be a good run).

So, grateful as I am for the excellent and effective emergency care I’ve received (and for a good health insurance policy to pay for most of it), I need now to turn my attention once again to the original goal:  complete healing.

Strangely, I have a notion that the bone metastasis and its pain and treatments taught me what I need to know to attain this healing. I’ve also learned recently that quite a few poets, mystics, and contemporary writers share the same notion. It all begins with the Sumerian goddess, Inanna.

 

 

 

 

 

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.