Radioactive

AVM

On The Radio: Satisfaction, The Rolling Stones
In My Bloodstream: Nothing cancer related during this time.

Today's Update

Heard from Dr. Harrington on Friday and he explained that there is some peripheral melanoma in situ, basically between the skin remaining from the last two surgeries.  He would like to go at it one more time.  

We still need to resolve whether this can be done without irritating the adjoining, recovering wound, or if we need to remove and redo the  whole area again.  He is still waiting to discuss the procedure with the pathologist, and then he will call me again.  Although I cannot go anywhere where my hat needs to be removed, we are active and happy.  The wound is still messy, especially at night, when I lie down and basically rub the healing site, every time I move.

Neither Kath nor I, are entirely sure of another surgery so soon after the last.  And she, in particular,  is dead set against another large skin graft, which is still on the table as another option.  I have had a few now, and the pain and healing time, especially on the donor site, make that a viable choice, only when the other roads are closed. 

2013 was a memorable year for us.  It was the year that Stephanie and Gray had their fourth child.  On April 22nd.  Zachary was born, and we were in Seattle for his birth, as we had been for each of the girls who preceded him.  It had been a ritual for us, and as they finally had their boy, I presumed it might be our last, dedicated to helping around the house and caring for the girls, until Stephanie was home and ready to manage on her own again. The birth of each of their children was always joyous.  It was a pleasure and a privilege to be at Gray and Stephanie's side and share their happiness as well as the time we were able to spend with their girls.  It was grand parenting to the max.  All of our future visits would likely be dedicated to holidays, birthdays and to special events.

                                                                Bea and Zac.

And then we returned home to Fort Myers and continued our welcome routines.

It was May 5, 2013.
Kath and I were having our breakfast with friends at our club in Fort Myers, in advance of our Sunday golf game with the Norths.  In the buffet line, I picked up my plate with my left hand and I clumsily dropped it, spilling eggs and salsa (lots of it) on my shorts.  There was a good crowd there - lots of friends - and they gave me great grief for my new look. I had to buy new shorts as I didn’t have time to go home and change before our tee time.  We finished breakfast, played our round, went home, watched a little golf on TV, and had dinner.  Curiously, all day, on and off, my left hand felt a little numb.  We talked about the tingling and a bit of numbness that evening, and I said to Kath that I would call the doc tomorrow morning, if it was still problematic.  And we went to bed.

The next morning I awoke and turned to face Kath.  I could not “find” my  left arm.  Kath was, as always, on my left side and my arm was under her head, holding on to her.  I knew it was there, where it always had been.  I could see it.  But I could not feel it at all.  In fact, my entire left side was not normal.  Kathy asked me to smile and hesitantly told me I was not smiling .  She said my eye was drooping and the left side of my face did not look normal.  Her guess and mine, was that I had suffered a stroke.  Off to the ER.  Immediately.

It took no time for the attendant to muster a team to take me into the belly of the hospital.  They rushed me from test to test and showed obvious concern for my condition.  It was a stressful period, and we were both really concerned.  Something serious had happened and we knew I was in trouble. Considerable trouble.  I remember thinking I might end my life in a wheelchair.  Or I might not even have to worry about that.

                       Head shaved and showing a brave face for Kath, prior to  my operation.



By that time in my life, I had already been told that I would not survive cancer another year.  Several times I was rushed into a new treatment as the cancer became overly aggressive.   Now, one more bridge to cross.  After all the requisite tests and consultation with our oncologist and a neurosurgeon, the consensus was that my melanoma had migrated to my brain and was planning to kill me.  We were in the midst of the most difficult time in our lives.  Shockingly so.

Typically, stage 4 melanoma will eventually mastasize to your brain or lungs to do you in.  Their prognosis seemed logical.  I thought,  “Here we go again”.   I asked the surgeon what might be the success rate of this type of operation.  He asked if I would define exactly what I meant by “success”.  How about getting off the operating table?  I was kind of joking.  He said that could not be guaranteed.  Whoops!  That was not the answer I had been expecting.

Kath and I had another of our talks about her future and my seeming lack of one.  A nurse was shaving my head and asked if I wanted just the right side done, or the entire head.  I couldn’t believe the absurdity.  I thought I would look ‘’cooler” dead with it all gone than with a half-shaven dome.  That would look ridiculous.  Done.

My poor Kath called our girls and someone called Father Bob, who rushed to the hospital, and to pre-op, where we were waiting for the operating theater to be readied for me.  He solemnly provided me with my last rites.   At least now, I had completed the necessary bureaucratic process to continue my journey, wherever it might take me.

I was pushed into the operating room, fretting only about my Kathleen and our girls.  The surgeon and his team were talking to me and to each other.  I could not follow any of the conversations.  I felt guilty for leaving my Kath behind.  Alone.  I was honestly ready for whatever God had in mind for me.  The sedatives must be kicking in, I thought, for it became quiet and I was suddenly at peace.

When I came to, many hours later, I understand, Kath was waiting for me, as she has forever done.  I was alive, I guessed.  I didn’t feel at all well and for sure I was really out of it.  The surgeon came to see us in the recovery room and told me it was good news.  I had suffered an AVM.  Most often, an AVM is the result of head trauma.  In my case, no such event had occurred.  An AVM in the brain of an adult is unusual and typically one would die, seemingly of stroke-like symptoms.  And even then,  it could only be discovered and confirmed in an autopsy.  Good news, he said.  It was fortunate that the AVM was discovered before I died.  And, it was not melanoma, as we suspected.

                                               Post surgery after the removal of bandages.


Good news?  I know cancer.  I have had cancer. I have cancer now.  Lots of it.  It has tried to kill me all too many times.  But it has failed every time.  I can handle cancer.  I can conquer that dragon.

That something other than cancer  had now tried to kill me and having failed at that. intended to leave me paralyzed was “good news”?

I did not think so.  I most certainly did not think so.  I was already in a daily fight to stay alive.  Melanoma had come into my body year after year.  It had shown itself to me in multiple disguises and had made me weaker, but we had never conceded defeat.  We had been at life's edge.  But we were still alive.  And now this.  It seemed to be too much to take.  How much could my family endure?  Kathy did not need to hear this.  Nothing "good" was happening here.

Stephanie and her daughter, Bea, and new son Zac, traveling with his umbilical chord still attached, flew in from Seattle right away, leaving Gray to look after Eleanor and Addy.  Kristin, her husband, Doug and sons Avet and Eli had already arrived from Los Gatos and were in Fort Myers in time to pick them up from the airport.  They all knew that the situation was not good.  I was alive, but basically unable to move, still in the ICU with Kath, who had steadfastly stayed with me, loved me, prayed for me and suffered with me through twenty years of melanoma.  And now this.  A husband who might never be able to stand or walk again.  My spirits were ebbing.  I was having difficulty seeing any reasonable future for us.

An arterial veinous malformation (AVM) is basically the opposite of a stroke.  Blood seeped into my cranium from a faulty junction of a vein and an artery.  The blood created pressure on the brain and motor skills, balance, etc. were lost.  I was in the stroke unit of Gulfcoast Medical Center in Fort Myers.  My future in terms of cognitive and motor skills was uncertain.  There were innumerable discussions with a wide variety of medical specialists, most of which gave fragments of opinion and suggestions of what might lie ahead.

 My family rotated visits, keeping vigil.  Lots of meds.  Intravenous with pain meds.  Pills for everything that was wrong and what could possibly could go wrong.  Soft foods and no honest sleep.  Someone woke me hourly to check my vitals and ensure my survival.  Early on I had hallucinations and my memory was, at best, spotty.

A nurse named Jeff, was wonderful.  He was caring and empathetic and fought for my rights with one doctor, who told me that he couldn’t help with my recovery.  I now realize that he might have meant that in relation to his field, but that is not how I understood his statement.  I kept telling poor Jeff that he was not “my Jeff”,  who Kathy realized was a club pro at Renaissance, where we lived.  Nurse Jeff had stood between me and a neurologist and chose his patient over his superior.  He told the doctor he could not speak to me as he did.  I do remember that incident.  Jeff had realized that all I could hear from this doctor's mouth, was that no hope was available to me.  I was going to remain paralyzed.  God bless my Jeff.  He pushed back against his superior to protect me and my health.

Trouble was, I was a raving lunatic at that point.   Reality came sporadically, in small doses.   Logic was not available to me.  Kath was my willing and only advocate.  I had absolutely no control of my life.   We were advised that any physical and mental improvement should happen over the next few days, and from that point, there would be little that could be done for me.  Walking, talking,  and arm and hand control were all possible, but perhaps not.  The same for memory and cognitive skills.  I would have to live with whatever was there.  And so would Kathy.  It was a frightening time.  Horrifying.

Within two days I could raise my head and was moving my arms and legs.  But I could not stand or control my left hand.  My drooping eyelid had improved, I was told,  and I could, and did, smile.   Nothing much was working properly for me.  I was bedridden and needed  help eating.  I was pumped with pain killers.  I slept and I woke up.  Over and over.  I was still alive.  And oh so  slowly,  in small increments, there were hints of improvement.

I apparently could not even remember what year it was and after a few days of continual testing, when asked who was the president, I said,  " I’m not answering that question."  Kathy laughed and told the nurse I was going to be fine.  My sad attempt at humor was the strongest signal so far, that I had a chance.  (We had lost about three years of retirement income when President Obama had changed the rules of bankruptcy for GM, and had gifted the money held by its bond holders to the union. I was still smarting from that slight of hand trick.)

On the third day I was sitting up and making attempts to stand.  Doug and my very good friend Dave Hanna came to see me every day.   Doug and Dave took on the task of helping me regain some mobility.  With their help, I was taking a few steps.  My balance was gone.  I stepped, only with someone holding me or grabbing on to the wall or the side of the bed.  My family and Dave were always with me.  I cannot explain what their love and care meant to me.  They both smiled and kept telling me that I looked good, and was doing well, when they surely must have believed I had no hope of ever returning to normalcy.  They played their cards well.

People from St. John XXIII dropped in to offer me their prayers.  Volunteers, who without knowing who I was, spent their time with me.  Remember St. George?  Help from people who don’t even know you, but understand your troubles.  Thank you to all who serve and volunteer.

 I was going to get through whatever this thing was.  I knew it.  A small victory was all I needed to convince myself that I would come back.  I was starting to believe that we could recover.  It was my first hint of optimism in a hellish week.

Our house was filled with our family and I was not with them.  I decided I had to get out of hospital and get home.  A hospital is not a good place to spend time.  You get treatment there, but you cannot get healthy there.  The doctors, nurses, orderlies and therapists were all diligent in their collective efforts to help me become mobile and recover some of my faculties.  Whatever that might be.  We were told that I would get some of my feeling back quickly, some minor improvement would follow and then, whatever didn’t function properly, would be that way forever.  I had to do something.

In times of distress, one has the choice to flee or fight.  Fleeing was obviously not available to me.  But I was ready to fight.  We were not going to end like this.