Health & Moving

One sweltering day last August when the portable air conditioner we stuck in the window of our 17-foot-ceilinged apartment was struggling to keep the place below 82, I flippantly said to Steve, "I can't bear the thought of one more summer in this apartment."  My romance with the river had faded. I saw it for what it actually is, a dammed (damned) polluted river with a hydroelectric plant, with a bridge crossing it that allowed cars to shine their lights in our windows and wake us when ambulances passed over on their way to the university medical center. Along with the trendy new restaurants and bars around the corner came loud drunken people walking below our windows at night smoking cigarettes. I loved the spaciousness of the loft and the big view of the waterfalls and the sky, but I was tired of the noise, the relentless artificial light, the F-16s roaring by (you Vermonters know that sad story), and the rest of the urban vibe. I kept trying, but it felt less and less like home.

I think it is a sign of health that I could think of not only getting out of bed each day, but actually  moving again. As often happens when I let the universe clearly know what I want, the wheels start rolling. Within a few days we realized we knew exactly where we wanted to live and decided we needed a condominium, not a house.

To make a long story short, we found the place and moved in the week before Thanksgiving. We found one of the only condos in Burlington that are all on 1 floor, without anyone upstairs or down. It has a 12-foot peaked ceiling, a fireplace, bamboo floors, and a fabulous kitchen. Other parts of it are in need of attention, but that gives us a chance to fix it up the way we want it. Perhaps its greatest attribute is that it doesn't share any walls with another unit. It's like a little cottage. Here's how it looked in September when we first saw it:

We look out from the back into a little patch of woods, and can't see any other units from the porch, bedroom, and living room (which you can't see in this picture because they face the back). We are wedged between 2 parks, around the corner from Lake Champlain, and on the Burlington Bike Path (miles and miles of paths along the Lake and through the city). And last week when it snowed, they came and plowed and shoveled right up to my front door three times in one day!

We moved the week of Thanksgiving and are now seriously settling in. Steve is a master painter and has done an amazing job of transforming our walls and bringing some fabulous color into our home. I'm exhausted and trying to recover from the push that I was miraculously able to pull off. Good news; there's a cure for exhaustion!

When we moved here 2 years ago, I never imagined we'd be moving yet again, and that I'd be well enough to begin imagining a whole new life. I thought I was coming back east to nest in my death bed. Moving to a new place helps me feel like I have a new beginning, and not just the beginning of the end. I can't imagine what will unfold next.

In early December I had another PET scan that looked good. All the places I have bone mets are still filled with lumps, bumps, and holes, but they aren't metabolically active. We can't say that the cancer is gone, but it isn't growing. The only place that continues to light up on the scan is where my third rib meets my sternum. It is so "wonky" that the activity there is probably a chronic irritation due to the abnormal movement caused by the distortion in the joint from where the cancer had previously spread.

I have agonized about how much to report to you all, and I fear that if I continue the internal debate that I will never get this blog entry out to you all. I seem to be getting all my mail forwarded and I've even gotten some packages that some of you have sent to the old address. Make sure you have my new address if you plan on contacting me by mail: 80 Austin Drive #261, Burlington, VT 05401. My phone numbers haven't changed.

I hope you all have a great "whatever you celebrate" and especially enjoy the return of the light. Welcome Home to us all.

Redefining Good Medicine

My drug holiday ended, and like all good vacations I had to accept the realities that come with returning to "regular" life, which in my case meant experiencing the side effects associated with my new cancer drug. I started taking a new aromatase inhibitor, letrozole, also known as Femara about six weeks ago. So far it's not quite as bad as the last two (Aromasin and Arimidex), but I'm back to cycling through intermittent phases of joint and muscle pain, as well as fatigue. I don't want to think of it as "bad" because it's part of the plan that is saving my life. 

The good news is that the new drug's side effects are not as challenging as those of the last drug, and the knowledge that the side effects are from the drug and not from some other degenerative aging or disease process makes it a little easier for me to cope. 

Aside from my own health, it's been a tough week for my friends and loved ones. One friend had a heart attack, 2 friends had life-threatening heart arrhythmias, one died of cancer, another had an old cancer spread. My own aging is challenging enough, but as time goes by I realize how much I experience the losses and grieving of my friends, their spouses, and their families.

It's a good thing that it's so fabulous to be alive. It makes it a little bit easier to navigate the hard parts. I wrote something to a friend this morning and I realized that I need to take my own words as medicine. If I need these words of wisdom, then perhaps sharing them with all of you would be helpful too.

When life becomes challenging and we are afraid, we need to be kind to our trembling souls. I don't think it's a reasonable goal to always be cool, calm, and collected, and feel Stillness. If we can remind ourselves that the Stillness is there, even when we can't feel it, we still benefit from its presence in our life. Isn't that what faith is? I think there's a big difference between feeling fear and taking it literally, versus feeling fear and saying, "there I go again," and not being so hard on ourselves. 

I'm off to have dinner with friends on this magnificent Vermont summer day. I hope you're all moving as gracefully through your lives as possible, given whatever challenges are yours this day, and that you take time and space to be kind to yourself and feel some love and gratitude for something, no matter how small or mundane that makes being alive in this moment worth it. It's good medicine.

My Drug Holiday Is Not What You Might Imagine

I have been on a "Drug Holiday" for the past 3 weeks. If you've never heard this term, you might think I've been intoxicated while on vacation. It sounds like I've been lounging on a pile of cushions on the floor of a dimly lit opium den in some far-away exotic Asian country. Or maybe I've been lying on a beach in Jamaica with the aromatic smoke of ganja being carried away on the ocean breeze. Amsterdam might be a great destination for a holiday of drug use. But, no, I'm home in Vermont and the drug holiday actually refers to the fact that I have just spent 3 weeks not taking my exemestane (Aromasin), the estrogen-blocking drug I've been on for 3 and a half years. 

Blocking the small amounts of estrogen that my adrenal glands and fat cells make seems to be one of the crucial things that have helped my estrogen receptor-covered tumors to shrink. However, the side effects have been debilitating. Since my last PET scan looked so good, we all (3 oncologists and the rest of my team) agreed this was a good time to take a rest from the drug, take a "drug holiday," and see if we could:

1. give my body a rest and a bit of relief.
2. see if I feel better off of it and distinguish which of my symptoms are side effects and which are not.
3. switch to another drug after the 3 weeks that does the same thing with a (hopefully) different side effect profile.

On day 4 the feeling that my joints were going to EXPLODE began to fade. I still feel a fair amount of pain, but without the apprehension of impending explosion. What a relief! What's left is some mix of garden-variety arthritic degeneration symptoms, bone pain from the sites of metastasis, along with the effects of being one year post my last dose of Zometa (zolendronic acid) and having my osteoclasts come back into action. For you non-physicians, this was a drug I took for 2+ years that inhibited the breakdown of bone. The theory is that if you inhibit the cells in the bone that cause it to break down (osteoclasts) and allow remodeling, then a tumor can't spread through the bone. The bone increases density and creates a wall-like effect that won't allow the tumor to break through it. It also leads to bones that get "stale and brittle" because they haven't been remodeling. I have a lot of catching up to do and although it's a good thing, it happens to be somewhat painful.

By the second week of my drug holiday, I found myself in San Diego at the annual meeting of the Osteopathic Cranial Academy feeling miraculously not fatigued. I was tired, but not fatigued. There is a huge difference between those two feeling states. This is the first time in 3 and a half years I've gone 2 weeks without an episode of fatigue. It's amazing to feel a little bit more oomph. But just as all things in life are, this state is transitory.

Now I am facing going back on a drug that may or may not have the same side effects. Tonight I take my first dose of Femara (letrozole). I'll know how I respond within the next few days to two weeks. I am advised to take one of this category of drugs for the rest of my life. The original projection was for the rest of my life to be a year or 2, so that now that I'm going on 4 years and getting better, not worse, the prospect of an unexpectedly long life on this drug is daunting. I keep reminding myself that I'd rather live with joint pain than die of cancer, to keep it in perspective.

Whatever happens when I resume the medication will happen with me knowing the difference between me and the drug. If I can distinguish the sensations that are caused by the drug from the natural sensations of my body, I will attempt to not take them so personally. I know that sounds odd, because I'm still the one feeling the pain,  but if I can attribute the feeling to something external, I hope to be able to cope with some greater ease or grace. This is my hope. We'll soon see if I can actually attain this lofty state of consciousness.

I have a new updated website. It's still at www.BonnieGintis.com, but it looks a bit different. It doesn't have any new content, it's just constructed from different software that's easier for me to make changes on my own if I add anything to it in the future. It's the easiest way to find this blog, if you want an update about my health or hear some philosophical musings about life, love, Osteopathy, Continuum, food, or whatever else moves me. (Check out the other beautiful websites designed by my divine WebMagician Copperwoman at www.Copperwoman.com)

It's great to be home after the grueling trip from San Diego, where Mike Burruano and I were each bestowed Fellowship in the Osteopathic Cranial Academy. It is quite satisfying to be acknowledged for all my years of service and teaching. All you Osteopathic colleagues, please come to Indianapolis next June, where I will be giving the Sutherland Memorial Lecture, as well as leading "Tours of the Minnow" at the ends of Friday's and Saturday's programs.

I'm working on my lecture, and on one of my several half-written books. This one is entitled, "Unexpected Relationships." Encourage me to finish it, because you might be in it!

An Article About Blogging DOs And My Greatest Hits

A recent issue of The DO, an on-line newsletter which explores "human interest" aspects of Osteopathic education and practice in the US, has an article about DOs who blog. I was interviewed for this story and a segment of my conversation with the author, Rose Raymond, appears about half-way through the piece. Here's a link to the article:
http://www.do-online.org/TheDO/?p=137331

During her interview, Rose asked me if I had any particular blog entries that were my favorites. She's not the first person who's asked me this. Now that I've been blogging almost 3 1/2 years, there are a lot of entries. Occasionally I get an email from someone who has just discovered my blog and they have read it entry-by-entry, like a book. But I also get inquires from those who ask if there are a handful of entries that are representative of the whole, that might offer an overview without reading all 93 entries. I sat down and skimmed all of them from 2009 to 2012, which was a bit like having my life flash before me. These are the ones that jumped out as my favorites. I wouldn't go as far as to say that these entries offer a complete summary of my life situation, and I hope this isn't what actually flashes across my consciousness as I am in my final moments before death, but these are the ones I most enjoyed picking as favorites. Click on each title and a link will take you right to the entry:

WEDNESDAY, NOVEMBER 11, 2009
Cause, Effect, And Coherence

TUESDAY, NOVEMBER 24, 2009
Thanksgiving and My Omnivorous Dilemma

SATURDAY, DECEMBER 12, 2009
After The Disability Forms, The Gates Of Hell

TUESDAY, JANUARY 5, 2010
Mr. Spock and I

WEDNESDAY, JANUARY 27, 2010
Statistics Or Sadistics?

WEDNESDAY, FEBRUARY 10, 2010
The Liver-Kidney See-Saw And The Paradox of Longing

THURSDAY, MARCH 4, 2010
An Unexpected Path

THURSDAY, SEPTEMBER 2, 2010
Making Sense With Stories

FRIDAY, OCTOBER 14, 2011
Coffee and "The Hidden Discipline Of Familiarity"

2013

The Silly Little Things Get Me Down More Than The Big Ones

When I moved to California in 1997, I passed the exam to be licensed to practice medicine and surgery, but I failed my driver's test. I had a bad case of arrogance. I thought that since I'd been driving all my adult life I didn't need to study. The exam turned out to have questions involving things like how many days you have to report to the Department of Motor Vehicles when you've sold a vehicle, how many feet from the car you have to place flashers if you've broken down on the side of the road, and what the fine is for littering on a state highway. I missed all 9 questions on the test that involved knowing an exact number of something that has nothing to do with actually driving. I survived the big horrifying ordeal of an oral and practical exam by the California Osteopathic Medical Board (6 men in suits grilling me under bright lights), but the silly little driving test brought me down.

I read the excruciatingly boring little book that the state issues with the laws and rules of the road, underlining all the topics with numerical values, and I passed the re-test a few days later.

Fast forward to last Wednesday, the day on which I had my 6-month follow-up PET scan. My bone tumors are all quieting down and only my 3rd rib, where it meets the sternum, glows in the dark, which they think is an acute injury at the area the tumor destroyed. They propose that my 3rd rib might just be injured and not metabolically active with cancer, since the other 8 or 9 bony cancerous lesions are all so quiet. I seem to have developed 2 areas of pseudoarthrosis - my sternoclavicular joint (which you read about a few weeks ago) and my right 3rd sternocostal joint. A pseudoarthrosis is the condition that ensues after something fractures or separates and heals in 2 separate pieces instead of uniting. It leaves me with "false joints" in my chest wall. This makes all upper body movements, like exercise, Continuum, yoga, dancing, hugging, carrying laundry and groceries, and sleeping challenging because my whole chest wall is so "wonky." This is one explanation for why I hurt so much.

On the CT part of the PET scan, you can see all the places where the bone metastases have left holes or bumps in the bones (sternum, ribs, clavicle, scapula, ilium, ischium, pubes). The bony architecture is altered, and in some cases quite deformed, but these areas aren't doing anything metabolically. This implies that what used to be tumor is gone. Although they say that there are probably active cancer cells in circulation, they are just not at a detectable level. They seem to be mystified at my progress, and want to attribute it to the anti-estrogen treatment. They can't quite fully embrace that all the other things I do for my health  (diet, supplements, acupuncture, exercise, meditation, love, laughter, chocolate, and much more) might have something to do with my mysterious progress.

They agree that since I'm 10 months post my last (and final) infusion of Zometa that my increased pain level is probably due to my osteoclasts starting to function again. Yay!!! I need some bony remodeling big time. I took the drug because it made sense to help stop tumor spread by inhibiting the osteoclasts, the cells that cause breakdown of bone. But in order to remodel a bone, you need to break some of it down. Now I'm able to do that again, but I'm feeling it, and it is going to feel worse before it gets better.

My tumor markers are also down and my liver and renal function are holding steady. My left kidney, however looks completely obliterated by polycystic kidney disease, which is (relatively) ok since my right one is not too bad. It would be a very sick joke indeed, if I survive Stage 4 cancer, and end up on dialysis in kidney failure. Let's just hope I don't have to face figuring out how to adapt and laugh in the face of that possibility.

In the midst of this, Steve and I decided to go to Cape Cod on Wednesday immediately after my PET scan. He is so curious about experiencing all the nooks and crannies of the east coast and seeing the places where I spent a lot of time before I knew him. He was ready for some time off and I thought it would be a great distraction to be on a road trip while waiting for the result. We set off for Massachusetts for the 6 hour drive to the cape. I showed him many of my old haunts along the way - places where I have visited friends in and around Boston, and all the places I've been on Cape Cod. He saw the pond where I first canoed, the bay in which I first embarrassed myself on a windsurf board, and the jewelry store where I had my left ear pierced in 4 places. We thought it would be great to be there pre-season while it was still quiet. It was, but (as Pee Wee Herman says, "Everybody has a big butt...") it was too early in the season to be there and fully enjoy it. It was cold and windy, and hardly any restaurants were open. After 2 days of wandering through the dunes and on the beach, we came home a day early.

It was so good to be home, because as we drove home, I realized I was coming down with a cold. Over the next 3 days it turned into a coughing. sneezing, sinus infection, sore throat, bronchitis, conjunctivitis nightmare. I had a fever for 3 days and felt like I couldn't celebrate my fabulous PET scan result because I felt like I had been run over by a truck and couldn't imagine surviving. Like the driving test, the silly little thing got me down.

It's such an interesting paradox, when being present in the moment feels so awful. I know that if I intellectually look to the future, I will get over this benign upper respiratory infection, but for the time being, I am stuck in the melodrama of feeling awful. I'm embarrassed to admit this because I know that it is a waste of precious life force to be so melodramatic about a virus, when I'm in the process of conquering cancer! Admitting this to you all helps me have a good laugh at myself and appreciate the opportunity to practice dying. I hope I don't flail this much when it's time for the real thing.

Revisiting The Language of Bones

I've written many versions of a piece I call, "Listening to the Language of Bones." The newest version has just been published in the on-line journal Survivor's Review (http://www.survivorsreview.org/features.php?vol=14&art=200). My essay is posted here for you to read, but I urge you to visit Survivor's Review and check out some of the very inspired writing there.


     When I took the oath as a physician on graduation day from Osteopathic medical school in 1986, I promised to listen deeply, to feel the messages conveyed by my patients' bodies, especially their bones, not knowing what that promise would eventually entail. After years of caring for people and devoting my studies and perceptual training to receiving the stories of other people's bones, my own bones call out more loudly than anything I've ever heard. My bones have become passageways for breast cancer to spread its cryptic message. I promised to listen, and now I hear an unexpected language spoken in a strange tempo that sounds like the static blur of a shortwave radio transmitting a distress signal from a faraway place in the night.

     I yearn to understand the language of bones, of the dialect spoken by the cancer in my bones. What is the grammar of cancer? With what does its rhythm and cadence synchronize? A tumor bulges from within my sternum, hovering over my beating heart. Is there communication between my heart and the tumor, or is cancer like a sociopath, wreaking havoc and causing harm without having any empathy for the suffering it causes? The paradox is that this cancer in my bones is essentially made from my own cells. Do I have cancer, or does it have me? Is it mine? Can it be had? Is it an "it," or is it me? Have I been inflicted or gifted by this growing presence within me?

     When I can't understand something, I turn towards the sensation of my moving breath, and look for resemblances and resonances with water. I lie in bed late at night when I cannot sleep and ride the fluid breath inside my bones.

     When I take this ride, I clearly see that the common feeling many of us have, that our bones are solid, is an illusion. The average bone is about 20% water. What an interesting way for the body to store and utilize water! Water is somewhat useless without a functional container. If you carried water in a plastic bag, it would not be handy when you got thirsty. If you stored your drinking water inside your car's tires, you would have no access to it when you needed a drink. The human body is an incredibly functional container for its 70% water content; its spaces, cells, and tissues form the vessel for its fluid-based form. Some mysterious set of codes and signals organizes our amorphous sac-of-water bodies into a highly functional form, and in my case, these signals have been distorted allowing cancer to overgrow inside my bones.

     I oscillate from sensation to science, from memoir to philosophy every time I hit a cancerous bump in the road. I try to breathe and just let it be, but I become distracted by the dissonance between what I think about the body and what mine is actually doing.

     Listening to the distress signals emanating from my bones, I am reminded of my promise. Bones carry promises from one point in time to another. The mineral and fluid matrix resonates and receives signals simultaneously from the past and future. Life unfolds from all directions, not necessarily in a linear progression, into all directions through our bones. My bones will bridge the past and future assimilating food and water, the wake of desire and longing, the residues of repetition and impact, and the hardened reactions to shock and trauma. The messages of my bones will persist whether buried or burned. The call of the shadow arises from deep in the marrow. A light cannot shine in such an enclosed space, but a river can flow in the darkness. A message arises from the darkness and I hear it emerge as a ripple in the stream of my consciousness. As I adapt to the dark, I hear a distant Voice, whispering, calling out an as yet unimagined message about allowing the next moment of my life to flow into the present. The response to this call, to such profound loss, is nothing short of radical reimagination. I promised to listen.

If you want to read about some of the things I love about bones that I edited out of this piece, go to my blog entry of June 18, 2011 entitled, "Secret Sculptures of Bones" or read Chapter 6 of my book, "The Mutability of Mesoderm."

The Joint Previously Known As Sterno-Clavicular

When Prince took on "The Love Symbol"

in 1992, in lieu of a name that was copyrighted by his record company (Prince) or given by his parents (Prince Rogers Nelson), he called himself, "The Artist Previously Known As Prince" because the symbol was not pronounceable. He embraced his existence, but the identifying label of his given name no longer adequately described who he felt he was. And so it is with my sterno-clavicular joint.

I went to yoga class yesterday morning, and while on my knees and forearms (the rest of the class was on their hands and knees doing a variation of Half Moon Pose), I rotated my upper body to lift my left arm up towards the ceiling and my right clavicle dislocated. It made some awful, dreaded, grinding sounds, followed by a thunderous pop, and I fell over in slow motion like Artie Johnson on a tricycle from an episode of Laugh-In circa 1967. Luckily the floor is nearby when in this position, so the fall didn't worsen my situation. In fetal position, I breathed deeply and did some subtle wave motions with my broken wing (arm folded at the elbow) and popped it back into something you might call "place." 

It actually wasn't too painful. It was more nauseating - that feeling that something is terribly wrong. I remember learning to cope with this feeling during the winter of 1987 while an intern at Coney Island Hospital in Brooklyn. The ER saw a record number of fractures that icy winter and I was on what seemed like an endless Orthopedics rotation. (U2's song "Still Haven't Found What I'm Looking For" seemed to always be playing on the radio in the ER while I was ransacking the supply closets for the right casting materials, which were chronically in short supply.) When someone is wheeled in with their broken fibula pointing in the wrong direction the doctor can't respond effectively while nauseated. I learned to breathe and reduce fractures. I knew how to cope with this relatively minor emergency.

I sat for a few minutes and finished the class with a lot of modifications. I don't even think the people on either side of me knew what happened. It's a class of mostly "older" women. People lose their balance and stumble frequently in this class, so I didn't stick out. (Oh crap, I just realized that I'm 56 and that's closer to 60 than 50. Even without cancer as an excuse for why I'm slowed down and creaky, I'm one of the "older women"!) Growing older, especially with disability is a lesson in adapting. When healing is not a possibility, the only way Health can express itself is to adapt. Here's an inspiring example: 

The teacher looked over to see if I was ok, but by then I was sitting and gathering my breath and my composure. Class proceeded uninterrupted. I cried a little while in Shivasana (Corpse Pose) and went on with my day. Today, surprisingly, I feel not too bad, like someone punched me in the upper chest. I think I just challenged the wad of scar tissue and bits of tumor that are "The Joint Previously Known As Sterno-Clavicular." Back in 2009, when bone metastases spread from my sternum into my clavicle they destroyed the joint along the way. Up until yesterday the area was sore and full of novel noises, but as long as I avoid things like volleyball and boxing (ha ha), it stayed together pretty well. I guess I have to be more careful when I bear weight on my shoulder girdle and move in novel directions. One more thing to let go of... 

As long as I can get back to Tango I'll be able to handle the loss. Yes, Steve and I are taking Tango classes. Please don't try to picture us; we're not that good. We are, however, having a fabulous time with our brilliant teacher and the sensuous music. 

The longer I go without blogging, the harder it gets to know where to begin. So when I had the humorous thought about my debacle in yoga class, I jumped on the opportunity to jump-start this long over-due entry. Here are the first lines of several recent failed attempts:

1. September 1st was our 1-year anniversary of moving to Vermont, 3 days after it was declared a disaster area from Hurricane Irene, and now we anticipate Sandy's arrival. (We ended up getting nothing at all from Sandy.)

2. I'll just cut to the chase; in the realm of cancer news, it's all good. My August and December CT and bone scans look "stable." No new cancer; nothing has spread or grown. It's all still there (sternum, ribs, clavicle, pelvis) but doesn't seem to be doing anything. I can live with this! 

3. How many blog entries can I get away with that start with an apology for why I haven't blogged?

I don't know the answer to that question, but I've never ended with an apology, so here's #1. I'm sorry I haven't blogged, but it was important for me to be in my life and not be reporting about it. I can't promise anything, but I will be blogging randomly in the future. Stay tuned and please drop me a line if you haven't heard from me and you're wondering.

In the meantime, I've grown fond of Prince's Love Symbol. It looks like a sternum and a clavicle with a spiral of healing vortex. If it weren't copyrighted (it's officially "Love Symbol #2; I have no idea what happened to #1) I'd use it as the new name for my "Joint Previously Known As Sterno-Clavicular."