Survivorship Revisited

Survivorship Revisited

Dr Sacchini had just reviewed my latest mammogram results at Sloan-Kettering. My remaining breast was healthy, and the opposite side showed no sign of metastasis. It had been 3 1/2 years since we first met and he became my breast cancer surgeon. His soft demeanor and hands had been so comforting to me, and his words today were uttered in the same gracious tone.

"You will not be seeing me again, Lynne, since you are now graduated to the survivor class of patients. You need not come back for one year, and you will be seen by nurse-practitioners who will monitor you. Of course, if anything bad happens, I will once again be there for you."

I had a mixture of feelings. Survivor? Not being under his careful oversight again?  I can wait for an entire year to be rechecked? Good news, certainly, but news of graduating into the survivor class did not make me feel more comforted.

I knew that most breast cancer metastases occur between Year 3 and Year 5 after diagnosis. What he was telling me was that statistically I was out of danger for cancer to occur in the other breast. But I still had to be followed by my oncologist, Dr. Graham, on a more frequent schedule until we could breathe a marginal sigh of relief in November, 2015.

In  INTEGRAL HEALING, coming out in October 2014, I report how I have struggled with that term 'cancer survivor". Ever since I heard the quip that no one is a cancer survivor until they die of something else, I've taken offense at the term. Overly optimistic, I thought. Not really helpful for a 68 year old woman where the odds are against me about recurrence. Don't get me relaxed and happy unless you can swear I won't confront cancer anywhere else, ever.

Yet the American Cancer Society offered me a different perspective. The word means "to live beyond", "to outlive."  So do I take the oncologist's time limitation and only see myself surviving after three or five or ten years?  Or do I live every day past my surgery as having lived beyond, having outlived. What a breath of optimism that has given me! I charge into today and tomorrow now. I "lean into" them. I banish the "what ifs" since I am already a survivor. Now, leave me alone to live the rest of my life.

                                                                       

As the term is defined on-line, a survivor is:

    a person who survives, especially a person remaining alive after an event in which others have died.

"the sole survivor of the massacre"

• the remainder of a group of people or things.

  "a survivor from last year's team"
• a person who copes well with difficulties in their life.

  "she is a born survivor"

"A person who copes well with difficulties in their life." It is this vision that the ACS offers to me. I don't need to wait three or five or twenty years to determine if I am a survivor of my cancer struggles. I need only cope well with the difficulties I had during them.

That brought me to thinking about Zak Stein's issue with books in general.  In his excellent commentary in INTEGRAL REVIEW, March 2014, Vol. 10, No. 1, he takes issue with books as a fundamentally flawed educational technology:

"Books are too authoritative, for one. There is no arguing with a book, let alone having it explain something some other way.... They are not good teachers because they simply tell you how it is. Even the best book cannot clarify itself...."

Here I sit, having finished writing and revising my book last winter, and I am already arguing with it/myself as I see my construction of my own story change.  My interpretation of  my life/spiritual/medical journeys is also frozen into "time quanta". My term denotes that my writing a sentence freezes my thoughts and worldview at that particular moment. It is true at that instant. But just as a river flows, and one cannot step again into the same stream, so another tick of an instant can change my perspective.

Time is but the stream I go a-fishing in.

Henry David Thoreau

I no longer have the negative connotation of survivorship as dying of something else. I have argued with myself, researched, read, meditated upon this term, since it is so prominently associated with cancer and illness in general.

"A person who copes well with difficulties in their life."  

That is what I wish for all those challenged by health issues, and what I wish for myself.

TAKE A DEEP BREATH

TAKE A DEEP BREATH

                                                  


I was a very active divorce attorney for many years.  Working with three other women lawyers, I wouldn't turn down a husband coming for a divorce, but the practice attracted mostly female clients. Many of these women were middle-aged and had married at the time when husbands expected their wives to remain home and care for the children as they came along. The men also controlled the financial functioning of the household. Oftentimes, our clients had no idea how to write a check or balance a budget.

Divorce would change all that for them. The four of us would take turns with our clients explaining the basics of household management.  Someone had to, or else their marital settlements might be dissipated by bad choices.

All four of us had yet another job: making sure that after we finalized their divorces, the women would take a deep breath and not make any major life changes for one year.

                              

They were coming off a major life shift; they had experienced serious stresses both during the marriage and the divorce process, which can be brutal. They often had little knowledge of how to conduct a life without a man being in charge. They looked at their futures with both endless choices before them and fear that they could not navigate those choices well.  They also had a very different social group around them now.  Some friends had "gone over" to their husbands after the divorce; divorced women sought them out and wanted to be new friends.

So many things to adjust to.

Take a deep breath.

                                                                       

I returned to my pre-law career of teaching high school in 1992 so that I could provide daily care for my aging, widowed mother. My hours and holidays permitted me to give her blocks of time for doctors' appointments and companionship. My court appearances were limited to summer, so that I could continue my law practice on a part-time basis.

In 2003 I took on yet another job: working virtually for Ken Wilber's Integral Institute which was located in Boulder, CO.  I worked every day, 7 days a week, 364 days a year, on the formation of what we hoped would become Integral University, and where I would assume an administrative position. But the attempt ended in 2006 due to a lack of funding.

In 2008 I ended my teaching career. My interests had shifted to creating an Integral spirituality course for a local adult seminary. My dream was to create a two year program to produce Integral spiritual mentors, and after a third year, to ordain Integral ministers. I put two years into creating the program and curriculum.

One prerequisite for me was to become an interfaith minister through training at the seminary, and then to seek Wilber's blessing to be ordained as the first Integral minister.  All was on track as of September 30, 2010.

On October 1, 2010 I was diagnosed with breast cancer, and sought treatment at Sloan-Kettering in New York. I had a mastectomy in November, surgery for a life-threatening cellulitis infection in December, and major surgery to remove my left lung after an unrelated lung cancer was discovered. Then there was five months of chemo, a blood clot, bad reactions to treatment, a suspected but not malignant lymph node, and finally I was "done" with treatment by the fall of 2011. Others had filled in for me in my program, but by the summer of 2011 it appeared to be dead in the water with no plans for its continuation, and who could blame the school?

So after all of this turmoil, what did I do?

                                                          
No. Not even close.


I became a frenetic ball of fire, mishandling things as I went.

                                


Meanwhile, my immune system had not come back on line and I began getting bronchitis and asthma attacks one after the other.

                                                   

What I had failed to do, and thus had failed myself and those around me who trusted in me, was to heed my own words to those newly divorced women:  Wait a year after the stress has ended to make any major life changes.

I felt as though I could not give into my illness. I felt that I had no time to lose as a result of that illness.  I feared that I might have little time left to ever see my plans come to fruition. All of this led to serious unintended consequences for me, many of them long-lasting and terribly hurtful.

Cancer and other serious illnesses are not over on the date of your last treatment.  Your body, mind, and spirit have had profound shocks that you might not be consciously aware of.  The effects of medication, surgery, the losses and necessary life adjustments after such events need loving, gentle care. Self-care.

So if you've just been diagnosed; learned about your future treatments; or have just finished those treatments, take heed of this advice:

                                        

Why Can't My Doctor Hear What I'm Saying?

Why Can't My Doctor Hear What I'm Saying?

                                                                

The snarky picture displayed above can be said to represent one type of doctor-patient relationship in our century. The patient comes in with a vague hint that something might be wrong with him, or the patient comes in having self-diagnosed.  When that patient has already been diagnosed with a serious illness such as cancer, a doctor should be listening intently. But sometimes this dynamic does not play out well, and there are several reasons behind its failure. In addition, there are several things both doctor and patient can do to draw the trained doctor and the frightened patient into a more level relationship of person to person.

1. Interns are expected by both patients and themselves to function like experienced doctors:

Consider the new intern, well-trained in his prestigious medical school, but not at all sure how to draw blood on his first day with a real, living patient. His book knowledge has not transferred over into the realities of treating. Consider that conducting honest inquiry into the patient's social-emotional-spiritual-bodily functioning has not even been taught at the intern's medical school. One can picture such an intern speaking as the doctor in the picture above.

2.  Traditional medical conduct involves "silent care."

This style of doctor-patient relationship places the patient in a position of relinquishing his autonomy over his care and replacing it in a condition of silent compliance, By giving over complete trust to the doctor, neither must truly communicate with the other. A "good patient" does not question the care he is ordered to receive, past the brief time it takes to sign off on the so-called consent to treat forms.

3.  Modern medical training involves lessons in denial and depersonalization that add to the doctor's high level of technical competence.

Not engaging in personal conversations with the patient and limiting them to one-way requests for biological/physical symptomology permits the physician to act on the patient as if he were a superior version of a car mechanic. Denying that the patient is experiencing dread, fear of death, excruciating pain, or a diagnosis that cannot be made, puts the doctor in complete control. The patient wants to be seen as a "good patient", and fails to push for recognition of symptoms or conditions that are not being addressed.

4. Both doctors and patients are sensitive to feeling they have failed the other.

Take the patient who comes into his doctor complaining of "pins and needles in his toes." But the patient has brought in something more; he has come in with a specific narrative in mind to share with his physician. And where did that narrative originate? From his beliefs, fears, conversations with friends and family, and his culture. Let's say that this patient had been a cancer patient now in remission or adjudged cancer-free after surgery and chemotherapy. 

Chemo can create neuropathy in the feet. So can diabetes. So can plantar fasciitis. So can badly fitting shoes or vascular issues. Or perhaps he was sitting too long at yesterday's meeting. The doctor can send his patient for a variety of tests, but what if he doesn't come up with a diagnosis? The doctor may feel that he has failed his patient, and the  patient may feel that the doctor doesn't believe him.

Dr. Rob Lamberts has a perspective on this possibility:

"She looked at me, eyes pleading, telling me without needing to say a word: I am not lying to you. I am not crazy. I am not making this up.

I sighed. “We’ve done the work-up and know this is not your heart. I don’t think there are a lot more tests that can be run.” I studied her expression, trying to discern what she wanted to hear from me.

I’ve come to understand that there are two questions my patients are looking for me to answer:

• Is there anything serious?
• Can you make me feel better?

Doctors don’t seem to know this list, instead either focusing on a third question, What is wrong with me?, or failing to answer one of these two questions. I’ve heard countless tales of frustration over hours spent at the doctor’s office only to hear the final judgment of “nothing is wrong.” These doctors have answered question #1 without addressing #2, leaving the patient to feel like they aren’t believed by the doctor. In the best case, this is a well-minded doctor who simply doesn’t consider the patents’ perspective; in the worst case, the doctor questions the validity of the patient’s story."

 As Dr. Julie Craig notes in her blog, "Embrace the narrative.  Withhold judgment. Explore the story in all its complexities, contradictions, and outrageousness.  Because therein lies the humanity".

5. Patients often feel that they have to present "interesting" symptoms to get their doctors invested in their care.

I recall going to my doctor after my cancer treatment ended and feeling reluctant to tell her that I felt tired, really bone-weary.  Had I come with too vague a sort of symptoms?  Did this warrant her valuable time being taken away from other, sicker patients? In other words, did I have the right to be sitting on the examining table?

If we had not reduced medical care to diagnostic codes, perhaps I wouldn't have had these concerns. What if there was no box she could check after she examined me? Would my insurance cover this visit?

6. Doctors and patients each have perspectives about the other that are never discussed.

A fascinating report by the Health Foundation in England summarized this phenomenon as follows:

"Taken together this body of work reveals that what often gets in the way of patients taking a more active role in their healthcare are the beliefs that each party holds about themselves – and about each other – and how these beliefs become reflected in patient, clinical and managerial behaviours."

Different perspectives most often are not discussed or unearthed during the brief time that clinician and patient interact. Perhaps patient has really come to discuss her desire to go out on disability due to her illness, but all she communicates is that after her treatment has ceased, she feels tired.

Another issue concerning differing perspectives hinges on whether the medical issue is a "tame" vs. a "wicked" problem. Treatment for common breast cancers are considered "tame." There are acceptable courses of treatments and probable outcomes.  The situation is fairly static.  A "wicked" medical problem is one "where there are multiple and often competing definitions of the problem itself and where any solutions are likely to have unknowable and possibly unintended consequences." http://www.health.org.uk/public/cms  Many medical problems, and many serious conditions such as complex or late-stage cancers fit this definition.

The proposed solution to this and many of the factors retarding doctor-patient conversations might take on the structure mentioned by the Health Foundation.

7.  Both patient and doctor need to clarify their respective perspectives at each meeting.

Is Dr. Smith going to suggest a mastectomy but Patient Jones knows in her heart she will doctor-shop until she finds one to perform a lumpectomy?  Both of them need to be more forthcoming about the presumed courses of treatment, why they were selected, and what the patient's initial reaction might be to each.

If Patient Jones is presenting with a wicked medical situation, then Dr. Smith and Jones need to negotiate their positions so that both are satisfied to a rational point with the outcome.

There are times where Dr. Smith is faced with a novel  medical situation Smith has no way to attack, and Jones is dissatisfied by what course of treatment is currently available. Such a truly wicked case requires that Dr. and Patient agree to co-evolve their approaches to the case as the situation clarifies and warrants.

                                                          

We have a long way to go to correct the current state of doctor-patient conversation. But both parties can begin to alter the environment so that both achieve satisfaction of being heard.