Paul's Heart

When The Shoe Is On The Other Foot

I have spent over half of my life, fighting cancer.  Sure, the physical battle itself, lasted roughly three years.  But the fight has gone on, and notice, I do not use the past tense, because there are so many elements that remind me, I am still fighting cancer today.  It may be physically from the late effects of the treatments used decades ago to treat my Hodgkin’s Lymphoma.  It may be emotionally as I struggle with PTSD and survivor guilt.  It may be because of the powerlessness I feel, unable to help others get to the point of survivorship that I have achieved.

There are categories of people in the world of cancer.  Patients.  Survivors. Caregivers.  Family.  Friends.  Patients are exclusive.  Survivors are exclusive.  Family and friends are other defined groups.  But caregivers are broken down into various subgroups:  doctors, nurses, techs, counselors, volunteers, and so on.  For over 27 years, I have been involved in all of these groups of cancer.

Being a patient, was fairly obvious what was of most important to me.  Getting through the entire process, from diagnosis to treatments.  Being a survivor, making sure that I followed through with the protocol for my survival, something I only learned about nine years ago, that this was something that I would have to do the rest of my life.  But as a friend, or a family member, it can often be confusing, and frustrating to know what is needed of us to not only get our affected friend/family member through the ordeal, but what to do, when experience tells us that something does not seem right and not being able to convey or communicate our concerns, or is it even our place to  do so.

This occurred, when my grandmother had been diagnosed with ovarian cancer.  I stood in her hospital room with the surgeon and our family, as the surgeon explained that “all the cancer was removed.  We do want Emma to undergo some preventative chemotherapy, perhaps about 12 cycles.”  Having been through chemo myself, including a “preventative” regimen, something was not adding up.  12 cycles was going to be a full blown treatment regimen, and for someone who was in her 80’s, this was not going to be an easy thing for her to tolerate.  Something was wrong, and I knew it.  But I could not convey to my family my concern.  In my heart, something was wrong.  And in fact, a month later, as she was about to begin her chemotherapy, the day before in fact, she passed away.  While I am confident, the speech from the doctor was ordered by my grandmother so that we would not worry, I was no less frustrated that my family could not see my concern.

I would face this type of challenge again, this time with my first father-in-law who had been misdiagnosed with Alzheimer’s.  I believed it to be a medication issue, when I over heard a nurse comment on his low blood pressure, and then proceed to give him his blood pressure medicine anyway.  Research by me would reveal the possibility of delirium due to his medication.  Instead, the doctors and family pressed on with Alzheimer’s.  Three years later, and being confined to a nursing home on psychotropic drugs to keep him sedated, some how, he had enough inside his thoughts, to quit taking all the medicines.  Long story short, within a couple of weeks, his thoughts would completely straighten out.  And he would have no memory of what he had been through.

Having been through so much with family, friends, and knowing so many other cancer survivors and patients that I had counseled, is what you would think, would have prepared me for the biggest challenge in my life.  So much so, even my father felt so.

When it first became suspected that my father possibly had lung cancer, he wanted it kept quiet until he was ready to discuss it with everyone else.  Only two of us, my brother, his wife, and I would initially be told.  But my father had asked something of me, I would never have thought I would be in the position of being in, to be his medical proxy.  He felt that with all of my experience, I would be able to explain everything to him, would be able to help him assess everything, and make sure everything was done right.  I assured him, that I would make sure everything went the way it needed, and he would get all the care that he needed to get through this.  And having been around the cancer world and dealing with other medical crisis, I knew that I could not, and would not let my father down.

But from the diagnosis, to the surgery which was supposed to take care of all that was necessary to treat the lung cancer, things got very complicated, very quickly.  His recovery from the surgery did not go smoothly, and was later discovered as I brought to the doctor’s attention, my father had two strokes.  Then chemotherapy was ordered, and radiation was ordered as well.  The cancer was out of control.  He would eventually be told he was terminal.  My brother had already been appointed his legal guardian, and I remained my dad’s medical proxy.

The cancer would eventually spread to his brain.  This complicated a lot of discussions and feelings with family members.  My father had made it clear, what needed to be done, and what he did not want to happen.  And as I wrote yesterday, I gave my father my word, that I could make sure that his wishes were followed.  Having witnessed before the stages that my father would go through, I knew what to expect.  What I did not expect, was how the family would react.

My dad made it clear.  He did not want to suffer.  And while he had very clear moments of thinking, there were other times his thinking was clouded, nonsensical, and often times, very confusing.  The problem was, he could be very convincing even during these periods.  But for those who had never been in this type of situation, all they could see is the person they knew their whole lives, scared, wanting help at all costs.

As my father’s health rapidly declined, desperation set in by some family members, searching and believing in other possible options, even a last minute “clinical trial” for those in late stages of aggressive lung cancer.  What I could not convey to them was that my dad was not a candidate for that, because of the late stage and current status, not to mention his compromised health with past issues.  I was blasted for not even trying or fighting for it.  But as I was dealing “emotionless” with my father’s needs, I knew an effort like that would be futile.  I had to concentrate on my father’s immediate needs.  I had to make sure that he remained comfortable.  I had to make sure that the staff was responding to my dad when needed.

At times, there were even petty arguments over the care of my father.  I was often described as cruel because I would not allow my father to have certain things, even though he was dying.  A simple can of Pepsi was a lightening rod.  But what I could not convince everyone, was this, he could have the Pepsi, but it had to be caffeine free.  But my dad did not want caffeine free.  But regular Pepsi would keep him awake, wandering the halls, all through the night.  And of course, with a limited nursing staff, this had created all kinds of issues with a full building of patients to deal with overnight.  Though most staff in a nursing home clearly care about the patients, their patience can wear thin, especially in the overnight hours.  And I did not want that to have an affect on them, or how they might treat my dad.  Shit, if that Pepsi was important, I may as well have let him have his cigarettes too.

But tensions continued to rise.  Family members wanting to make certain arrangements, which clearly were not allowed by guidelines of the nursing home or hospice.  And the fact that I defended the home and hospice made me some sort of ogre.  How could I be so cruel to my father?

After my post yesterday, you know the answer.  I had to.  He asked me to make decisions for him, to make sure that he did not suffer.   That he would not suffer.  Even something simple as having to discontinue his medications I was seen as if committing murder because I did not fight for him to receive those pills.  And if he became sick, like the flu, he would not be treated.  That is how it is in hospice.  Why treat someone, make them healthy, just to die that painful death that is going to happen?

I spent every possible moment I could with my father in those last few months, as well as being his caregiver.  I would often be with him in the overnights, just to make sure that I could help if he needed anything.  I did what I could for my father, because that is what he trusted me to do.  And I kept my word.

But as I said yesterday, as hard of a loss as my father was, I still have not been able to grieve for him.

Tomorrow marks the third anniversary of his passing.  And the pain of his loss still hurts today.  And that is why I cannot grieve.  That pain is all I have of him.