Russell and Associates - Forum

Recently, my wife was diagnosed with adrenal cancer.  It is a very rare form, effecting 1-2 out of 1 million people.  As one might expect given the number of people effected, there is little research on this strain of cancer, and only a single medicine that offers a little hope for the afflicted.

The one drug that treats this form of cancer – Mitotane (Lysodren).  It is not a cure, but a way to inhibit the spread of the tumor that forms on the adrenal glands and, hopefully, prolong life.

One of the most difficult events was accepting the diagnosis.  The doctor actually called my wife at work and told her, over the phone, that she had cancer.  That was  a tremendous blow, and, a very unprofessional way to inform someone that their life has changed forever.  We, obviously, did not ever visit that doctor again.

When we visited the oncologist that was referred by the above doctor, he too was very direct, insensitive, and offered absolutely no hope or suggested courses of treatment.  He had us go to the appointment just to tell us that he could not help us, and referred us to another doctor.  The total time wasted seeing the first doctor was approximately 2 weeks.  When this doctor read my wife’s case file, he should have referred her to the specialist, bypassing his visit.  Our suspicion is that he never reviewed her file until we were in his office.  We later discovered that this doctor was new and just out of residency – not a good situation for him or us.

Once we did see the proper specialists, his words were not comforting.  My wife’s cancer was advanced (stage 4) and had metastisized to her liver and other vital organs.  His options were Mitotane or an experimental study group that used two forms of chemo – which would have resulted in sickness, loss of hair, and other negative side effects.  We opted to just use the Mitotane.  This did cause her much discomfort – it is a chemotherapy drug after all – but far less disturbing than the experimental treatment would have been.

Soon after we returned with the bad news – less than a week – my wife injured her foot ever so slightly – she bumped it on the couch.  Within 2 days, she was in the hospital with a severe skin-muscle infection that resulted in a large portion of her skin on her foot to be removed.  This was a very painful procedure, and even more painful after given the vacuum that was required to pull the lymph fluid away from the wound to promote healing.  We were filling 5-7 of these canistered a day – about 20x level above a ‘normal’ wound situation (1-2 canisters a week).  Her tumor had blocked the flow of lymph fluid, resulting in edema of her lower extremeties – her legs were swollen to about 3 x the normal size, which made walking near impossible.

The wound did not heal, and continued to get worse.  As a result of the Mitotane, my wife developed an ulcer.  One evening, she began to cry out in pain.  I thought that this might be the end.  We called paramedics, they arrived, and they drove her to our local hospital.  They handled the situation with tremendous professionalism and empathy for Shari, our children, and myself.  In route, the paramedics called the hospital to get permission for a dose of Morphine – which was politely denied – an abysmal commentary on our current state of medicine – pain + a terminal illness should equal empathy and special consideration – which it did not.

Once at the hospital, they finally began to administer pain medication.  She was given 3 doses of 2mg Morphine – which did nothing to ease the pain.  Finally, they administered Dilaudid and within 10 minutes, the pain subsided and she became very aware and awake.  We talked about life, our children, and the realization that our time together would not be much longer.  At 1:30AM they moved her to her room, and I left to be home with our children.  This was the last time we actually shared meaningful, lucid time together.

One of the medicines that they gave Shari was a patch containing Fentanyl – a potent narcotic with hallucinogenic side effects.  I did not understand this effect and was very concerned that Shari was ‘out of it’ for the duration of the visit.  After two days in the hospital with not a single doctor visit (??? it was a weekend and no doctor was available ???), they finally performed an endoscopy to determine the cause of her pain, they gave her the requisite meds to heal the ulcer.  This worked, and worked for the next month.  The drawback of this visit was that a second procedure was required for her foot to remove more necrotic tissue.  This was only about 5 weeks after her first surgery.  This was very difficult since she was, by now, very weak.  The cancer was not ceasing its progress, and her abdomen was now noticeably distended from the mass.  This stay in the hospital was 7 days.

Once she returned home, she recovered quite quickly emotionally, but was never quite completely coherent.  The medicine and her inability to consume enough food to sustain her resulted in a very fast decline.

About two weeks after her last hospital visit, we finally submitted and signed up for hospice.  A week later, she passed away, in my arms, fighting for her last breath.

This event was surreal – Shari was diagnosed on March 11th with adrenal cancer, and died on June 12th – my youngest daughters birthday – a lifelong burden for her.  This was a very fast disease, and one that probably would not have been diagnosed early enough for a successful outcome.  The symptom that was apparent and obvious was very high blood pressure (200 / 132 !).  However, the bp meds immediately caused a reduction in this symptom (within 2 days), so any further analysis might have been thwarted by this successful administration of BP meds.

It is early October, and we are still fighting the loss of our most precious companion – my children’s mom, and my life partner.  Each day is different – one day we are content – even happy – working together;  the next one or more of us are depressed, sad, and thinking about what could have been.  We miss her very, very much.

Our children are tremendous individuals – and very strong.  They are handling this loss with dignity and resolve – to see that her memory and life was not in vain.  Family and friends have supported us, both emotionally and financially, during this struggle.

Some say that God never gives anyone a challenge that they cannot overcome.  For myself, this is probably true.   For my children, I am hesitant to agree with this rather simplistic analysis.  Time will tell, but for now, we are all in a state of limbo – waiting and working towards that time when we can begin life again, without the constant pain and memories of one lost.

Throughout this ordeal, our Faith has been tested.  Every time we would ask ‘why Shari, why mom?’, we would not get an answer.  I would gladly have switched places with her – we have two daughters and one son – a mother is so very important, and she was such a wonderful mother.  Shari was a faithful wife, a loving mother, and a fun person to be with – someone who loved to laugh and made others feel at ease.  She never faltered from being who she was – a strong and wonderful person – up to the very end.

For those who have endured the loss of a loved one, my heart goes out to you.  One cannot comprehend the significance of such a life-changing event unless they have experienced it.

God Bless,

Vic.