Thursday, October 11, 2012

Pain and . . . Cancer? or . . . Other Things

The following is not intended to frighten anyone about to embark upon medical treatment for cancer, or anything else for that matter. It's just one set of experiences. As my daughter is fond of repeating to me, "Everyone is not you, Mom."

But ~ Yesterday's cancer-and-depression link took me to another one of even more interest to me personally, an editorial in the Journal of Trauma and Dissociation on the connection between trauma, particularly in childhood, and physical pain and serious health problems, such as heart disease and diabetes.  Although none of this is well understood, one study indicates that physiological changes resulting from trauma can lower pain thresholds as well as create stressors that affect the development of subsequent disease.

The matter of pain was what interested me.  We have long known, in my household, that everyone is, indeed, not me.  I'm the one who, when prescribed some form of Oxycontin, wanted to know how anyone gets addicted to the stuff, since it does absolutely nothing.  I'm the one who has finally learned to translate doctor words like "discomfort" or "a little pressure" into "stabbing, searing, you-need-to-run-away PAIN."
When I was making decisions about breast cancer surgery last fall, my surgeon commented at one point that "we have great drugs to manage pain."

I was hopeful but, of course, I found that not to be the case.

There is a brief procedure immediately prior to a mastectomy which involves injecting radioactive dye designed to "light up" cancerous lymph nodes.  The laudable objective is to determine whether any of the nodes need to be removed, sparing women unnecessary surgery in the event that they are all clear.  This is an improvement over the fairly recent past, when all doctors could do was biopsy a few nodes haphazardly removed and then take some more, or all, if a problem appeared.  I was told that the procedure would be painless, and the doctor insisted that my friend Maggie, who had gotten up before the crack of dawn to join me, leave the room.  I think that Maggie would tell you, based on the screams she heard through the doorway, that it was far from painless.

I felt as if my entire breast were being set on fire.  The surgeon might as well have doused me in gasoline and lit a match.

When she met me in the pre-op setting a couple of hours later for a last few encouraging words, the look on my face must have given her pause.  In the end, she said little,  I know that, with moments to go, I was considering cancelling the surgery.  If Maggie hadn't been there to keep me laughing with our mutually sarcastic humor about hospitals, I probably would have.

(Last week, another woman recently diagnosed told me that she is going to the same surgeon.  "She's the best in the city, of course," she added.  I remained silent.  She probably is.  It was probably me who was the problem, right?)

For the next several months of recovery and reconstruction, the pain was relentless.  Basically, from the surgical lumpectomy at the beginning of October to the final surgical recovery at the beginning of March -- five months of unremitting pain.  On many days it was not so bad, and did not keep my from my usual activities, but I was unable to lie down, i.e., sleep in my bed, for most of that time period; I had to be extremely careful about physical movement; and I was persistently exhausted from contending with pain pain pain.

Every doctor would say the same thing. "This is highly unusual."

SO not helpful.

When the plastic surgeon asked if I wanted to proceed with what needs to be done to "balance" the situation, I told him that there is a great deal I would need to forget before I could consider another surgery.


Reading those articles yesterday, what impressed me was how little we take into account the whole person in our medical system.  Purple left a comment to that effect, didn't she?

My friend Karen tells me that in her work with childhood cancer, she has learned, particularly from one young woman who has been treated for cancer both as a child and as an adult, how different our medical approaches are, depending upon the age group.  The holistic care so needed by each of us is readily available, at least in the best medical centers, to children~ but, in that young woman's experience, vanishes in adult care.

I'm grateful for many aspects of my care.  The reception areas in which I often had to wait apprehensively for long periods of time are all attractive and comfortable.  The days of treating patients with paternalistic condescension are largely behind us.  And, to be fair about it, there is another organization in town that addresses cancer care for patients and families in a holistic manner, with arts and yoga and support groups and speakers on care-giving and care-receiving topics.

Kinda interesting, don't you think, that I knew about that organization due to newspaper articles and word-of-mouth.  NOT due to any pamphlets or posters or  recommendations in doctors' offices or hospital waiting rooms.


My thoughts about this involve a pretty simple suggestion: In those endlessly repeated medical history questionnaires and interviews, might one of the more important questions be something along the lines of, "Is there anything about this upcoming procedure or sequence of care that particularly frightens or concerns you?"  Or, as a follow up to those questions about previous surgeries, "How did that go?"

I don't think, for instance, that it's all that interesting or significant that I've had a c-section.  If I were a surgeon operating on me in the future, however, I might want to know that the anesthesia for that c-section didn't work. It might help me make some alternative plans, and it might warn me to seek expertise for my patient in areas not my own.

I wouldn't expect surgeons to have much interest in the fact that an adult patient's mother died in surgery thirty years earlier.  (That particular story isn't mine.  But it does belong to others.) Such a person might benefit from some pre-operative counseling in recognition that she's headed to a place that's very scary for her.  If I were that person's surgeon, I would want to know that in advance -- not to learn about it from the chaplain afterward.

We are so not merely our body parts and the diseases and injuries that compromise them.  I'm grateful for the medical expertise that's so easily available to me in a large city with two nationally recognized medical systems.  But there is so much more to healing and health than the medical aspects of our lives.


  1. If you think the approaches to cancer treatment differ drastically between that provided for children and what is presented to adults, wait until you reach old age. If the treatment offered to adults is unacceptably "un-holistic", what they offer to geriatric patients borders on physical and psychological abuse and/or neglect.

    Western medicine has gone almost completely over to science...maybe, more specifically, Chemistry. There is very little of the human element left in medical treatment, much to the detriment of our species, I'm afraid...

  2. That particular medical procedure is ahead of me yet. The surgeon did tell me yesterday that it was not a fun one to go through.

    I gave my surgeon the bulk of the posts that I have written on my journey through diagnosis/misdiagnosis and back again. I thought it might be helpful to him to read from the patient's point of view. I'm fortunate in that he has done extensive work overseas in countries that have no diagnostic equipment and he told me that he's had to learn to truly listen to patients as they know their bodies.

    I am sorry that you have had so much pain.

    1. Hope, I am deeply moved by the relationship that your surgeon has opened himself up to with you. I think that in itself must do a great deal to alleviate fear and physical pain.

      I read all your posts from the beginning of August on, and you have certainly been through a Scylla and Charybdis passage of diagnoses and misdiagnoses and ambiguous diagnoses. But it seems that your doctors have been consistently available to reflect on the situation with you.

      I wrote a letter to my first breast cancer surgeon explaining how her handling of my case had led me to change surgeons. She never even acknowledged receiving it. Perhaps someday I will print out my blog posts and send them to the breast cancer practice.

      I think that, for me, as I age, the events of 1960 loom larger than ever, which means that every step into a medical building is one that takes considerable courage for me. And, of course, my son's death has completely altered something in the very core of my being, so that I am very quick to arm myself internally against perceived threats at times when an open acceptance might be far more helpful on every plane -- physical, spiritual, emotional, and mental.

    2. What a lot of posts you would have read to get the gist of this part of my journey, Robin! That touches me.

      I am ab ig believer in our bodies/cells having memory and that trauma lodges itself there so I can readily believe that the events of 1960 have shaped you in a lasting way.

      As people say well meaning but painful things to me about having cancer it is a struggle to continue to be gracious and not just shut myself away from taking the chance that someone will add to it.