Authored by Sydney Reed, M.S.W.

Due to the amputation of my husband’s foot, we spent Christmas this past year in the Mayo Clinic hospital. This is the twelfth year of a long story.  David has had a pain in his left foot when he walked on it for the last twelve years.  Medical opinion assumed the problem was neurological.  He was referred to countless doctors who referred him for x-rays, CT and MRI scans.  No one could find anything to explain the pain.  One pain clinic installed a nerve stimulator in his back that was controlled by a technician at Abbott Labs who determined the dosage and the frequency of the nerve jolts.  It didn’t work!

An alternative medicine doctor prescribed cannabis for sleep which did work.  He saw five different physical therapists over the years and five acupuncturists. When he didn’t get better, I assumed he wasn’t doing enough of the exercises and tried to “help” with constant reminders.  He said the Physical Therapy wasn’t helping. David, a second born son with a tendency toward stubbornness married to an oldest bossy sister, me, is a marriage set up for predictable conflict.

My colleague, Stephanie Ferrera, wrote a wonderful paper called “What Is Help” (link) inspired by her dealings with a sister with a chronic disease.  It was a paper I often shared with clients and found very useful as a guide to getting out of the fusion and togetherness that happens in a marriage under anxiety and stress.

1. Stay in contact
2. Relate to the whole person and not just the illness
3. Respect the autonomy of the impaired person
4. Share information without telling others what to do
5. Define one’s own position
6. Stay connected with every member of the system
7. Stay connected with objectivity
8. Work toward open relationships
9. Allocate resources in a balanced way

These are the main principles Stephanie defined for herself based on differentiation of self that are so practical, but often so difficult to do, especially over twelve years. David was remarkable in carrying on his active life, but inside the house, there were many things he could not do quickly, and I didn’t have the patience to wait for him to get things done.  We both could get very frustrated by these situations.  Having Bowen theory as a guide was extremely important and enabled me to get back on track when I needed to.

His doctors were frustrated as well.  In August 2023, his neurologist whom he saw four times a year for the last four years ordered an MRI for the first time.  The last one had been done eight years earlier and had revealed nothing.

This MRI showed a mass in his foot, a very rare medical problem.  But what was there in the treatment of twelve years that prevented them for seeing the possibility of such a tumor? Faced with great uncertainty, the human mind will look for an answer, something that can be a reliable prediction for what might happen.  This is often the time when anger, frustration and anxiety focus on finding someone or something to blame.  It’s a pretty common anxiety binder.  Thinking about the blaming that I am prone to in this circumstance, blame David, blame the medical institutions, blame myself, I realize that this tendency to blame interferes with the total energy needed to move beyond the past and find productive and creative ways to face reality and the future.

Now chronic anxiety turned into acute anxiety.  In September another MRI, this one with contrast, prompted the neurologist to send the MRI to an oncologist who referred David to a surgeon. The surgeon said it was a tumor, undoubtedly pushing on a nerve to cause the pain and recommended he choose between three options:  doing nothing, doing exploratory surgery, or having an amputation.  What a shock!  I said we would want to have a second opinion and could he recommend someone.  No, he couldn’t think of anyone.  He also got caught in the triangle and put me on the outside, which I didn’t appreciate.  The anxiety was very high in both David and me.

The surgeon wanted a surgical biopsy.  I asked for the biopsy that very day, but David wanted to get home for a barbershop quartet rehearsal and the biopsy would have to wait.  Even though I knew we handled our anxiety in these opposite ways, it was impossible to find a way to handle myself except to distance. This is not my usual method of operations and not the best way to problem solve!  After a few days, we calmed down and could plan visits to other hospitals, making appointments at Memorial Sloan Kettering in New York City and Mayo Clinic in Minnesota.   An old physician friend called David regularly.  His wife told me his strategy was to calm David down, which would then calm me down.  Of course, the process worked the same way if I calmed first and he followed.

Before anything could happen, we flew to Montana for two weeks to care for my sister who had just had surgery.  Then December was filled with visits to Memorial Sloan Kettering and Mayo Clinic. The surgeon at Memorial Sloan Kettering was very kind and instructive but could not tell us if there was cancer or not and recommended a surgical biopsy.

We drove the five and a half hours to Mayo Clinic. We both were reconciled to the need for an amputation, believing he might have a better life when he could walk, and maybe even ski again. When we got to Mayo, the surgeon had reviewed the same MRI scans as the other two.  He consulted the members of his team.  He told us immediately, “This is cancer and you need an amputation”.  He showed us the evidence in the MRIs from which he had made the diagnosis.  He knew to involve us both, answering every question that we had.   The surgery was scheduled a week later.  David was delighted finally to have a diagnosis after twelve years.  A hard cast was put on to protect the wound now called the stump.

Our son arrived from the East Coast to provide help and support.  It was great to have him there.  After a few days, I realized that the old parental triangle had been activated.  It was so obvious, it almost made me laugh.  Working on those family triangles in earlier times now paid off.  I knew how to manage myself in this triangle and the visit proceeded in an open caring manner for all of us.

Two weeks later our other son from the West Coast arrived to drive us the five and a half hours up to the Mayo clinic for the post-op visit.  Several of our conversations in the last few months had ended in angry outbursts from me.  This son is a systems thinker. He said he prepared himself for a week to calm down any situation that arose on our trip by how he managed himself. That was the January weekend of the major storm in the country.  Thank heavens the visit at Mayo had gone well, as the wound was healing nicely and the hard cast could be removed, to be replaced by a soft cast, or stump protector. The clinic agreed to help us transfer our care to Chicago.   Riding on this success, we began the slow torturous journey home. Our son drove the entire eight hours in icy conditions with his mother giving all kinds of anxious advice from the back seat.  We all agreed on what our anxious behaviors looked like and accepted that we were, in fact, all doing our best.

This end of January time is not easy but my husband and I are handing it well. In two weeks, he will begin work with the crew at Shirley Ryan Ability Lab to get a prosthesis and learn to walk again.

How does one sort out the best thinking of many doctors who disagree?  Looking back, I think our Mayo doctor was the most differentiated.  He handled the emotional intensity of the interview well, he had deep experience, was confident about what he was seeing and consulted others on his team to confirm his thinking.  As it turned out the tumor was cancerous, a stage two sarcoma, and doing a surgical biopsy could very well have spread the cancer.  We were so grateful that we had found the right doctor in the right hospital.

On March 1, 2024, “Chronic Illness and Death” will be the topic of the keynote address by Jennifer Howe, MSW at the CFC 26^th Annual Day of Workshops. A tape on the subject by Dr. Bowen will be shown as well.  Having previewed the tape yesterday I was struck by the fact that we had not talked openly about our fears of the cancer spreading. We had that important conversation last night.   I’m looking forward to hearing from others how chronic and acute illness have been handled in their families and how they think Bowen theory was helpful, or might have been helpful.

Ferrera. Stephanie, “What Is Help, A Theoretical and Social Perspective”, 2011, Family Systems, Volume 5, Number 1 (link)