Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “January 8, 2013”

Never Done With Cancer

My last day of chemotherapy took over 270 days to reach.  It should have been thirty less, but low blood counts delayed my seventh cycle, which to this day I will believe was the difference having taken the full chemo, and not a modified dose, and over twenty two years of remission.

My chemotherapy nurse Brenda had walked over to my chemo chair and prepared to remove the final IV line of my poisonous cocktail of drugs.  Brenda was a petite and very soft spoken woman.  Throughout my cancer journey, Brenda was more than a chemo nurse to me, she was like a “cancer Mom” to me.  She was always encouraging me from the first injection and celebrating with me on the final day.  And with a “mother’s love”, she helped me out of the chair, pulled me in to the gentlest of hugs, pulled slightly away, and with the biggest smile, looked into my eyes, “You’ve done it Paul.  You got through it.  As you walk down this hall, ‘listen’ to the marching band playing for you like you just scored the winning touchdown.  You’ve done it Paul.”

Today we have the internet, so now celebrations are a lot more visual.  Pictures on-line  with people holding signs saying “I kicked cancer’s ass” or “Remission April 12, 2012”.  It seems that several hospitals and chemo wards have a bell mounted to a wall that gets rung as you walk out for the last time.

That feeling unfortunately does not last.  Soon after, you look at your calendar and realize that you have a follow up visit scheduled with your oncologist in just three months.  Of course, as a survivor officially, I wished it could have been just a bit longer of a down period to soak of my achievement.  But there was a plan, and it was followed and it worked.  And if that was not bad enough, it was not long before thoughts of the cancer coming back came into my head, and stayed for a long time.

My follow up appointments got longer between visits to four months, then five months, and by the second year in remission, I was being switched to every six months.  At four years, I got to go to annual visits.  But the fear of recurrence still hovered over me.  But by this time, I actually was beginning to think of being done with cancer.  Applied for health and life insurance, told to call back when I hit the five year remission mark.  Turned down for a job because I needed to be in remission longer (another post).  So, there it was, the end of my cancer journy, five years in the making.  Boldly, I called it “the cure mark”.  At five years I would make everyone happy I was done with cancer, most importantly me.  There would be no more discriminating against me.  I would be able to buy insurance again.  I could apply for any job I wanted.  Even better, my oncologist forgot to send me a reminder card for my follow-up appointment.

Now as you follow my blog, you will see a pattern.  I have a habit of acting out “as long as no one notices, and I am not feeling toooooo bad, nothing needs to be said or done”.  And that is exactly what I did, nothing.  The following year, still no reminder card and so on.  Of course, the responsible thing would have been to contact the oncologist myself.  I knew that I was supposed to have the follow-up appointment.  But I soon realized, I was no longer dealing with cancer.  I had finally done it.  No more cancer.  No more fear of recurrence.  And that is the way that it went for twelve more years.  I went back to seeing my family physician only once a year as needed for a season allergy shot.

In April of 2008, the 16th to be exact, I learned a frightening truth.  I was not done with cancer.  No, my Hoddgkin’s Disease had not come back, but over time an unrealized side effect had developed.  The main left artery going to my heart was so badly damaged, that during my appointment just for testing, I was not going to be allowed to go home.  It was that bad  (You can see the whole story by reading “CABbaGe – Not Just A Green Leafy Vegetable” which the link can be found at the top of the blog page).  But I did convince the doctor to allow me to go home to get my affairs in order.  For whatever reason, I began to sing to every tech, nurse, and doctor that came near me, “I had Hodgkin’s Disease.  I went through radiation therapy.  I went through chemotherapy.  I have no spleen.”  It was like a recording being played over and over again.

Prior to my heart surgery, I had already been involved with other long term cancer survivors.  So I knew what the news of my heart surgery would mean.  All the people that I empathized with were now going to be my support and guides through whatever would come my way.  I needed to find someone who would have knowledge and experience with long term cancer survivors and late effects.  I found perhaps the best doctor not just in the country but in the world who has spent decades researching Hodgkin’s Disease and late cancer treatment effects.

And that is how my first visit with him would begin, learning about what they have learned about not just my treatments, but those who came before me, and those that came after me.  I was told of the new protocol and the importance of following cancer patients when they were done with treatments as it is better to recognize any side effects like secondary cancers or other maladies.  I am just one of millions of long term cancer survivors alive decades after their treatments ended.  And if this encourages you, then know that I have met many other survivors who have beaten cancer twice as long as I have.

It is one thing to be told we are in remission.  It is another to be told that we have beaten cancer.  But most of us were not prepared that we would have to continue our care, even if just follow up visits, for the rest of our lives.  Please be sure, I know what it means to be have beaten my cancer.  I know how toxic the treatments were.  Emotionally, I survived but most recently deal with physical maladies and something called Survivor Guilt.  If I could tell my oncologist one thing that I wish he would have told me, is that I would never be done with cancer.

The Power Of Pets


I was going to be starting chemotherapy in less than a couple of weeks.  My plan had been set.  I would leave work an hour early, get my injection, rush home (I had only twenty-five minutes until the next phase), puke, crawl into bed and wait for my wife (now ex) to get home several hours later.  It was a lonely routine.  The solitude served as a constant reminder, that it was just me, that was going to have to get through this cycle, for nine months.  We had always talked about getting a pet, but living in an apartment building we were limited.  I am not really a cat person but the pet policy of the complex did not allow dogs.  Even a cat would require a security deposit for potential damage.  Not even through the first week we realized I needed something to occupy my time.  We went to the local SPCA and adopted a calico kitten which we called Pebbles.

It did not take long for either the kitten or myself to get used to each other, or our routines.  She adapted to using the litter box immediately, so all I had to do for her was make sure that she had water ad lib, and I made sure to feed her in the mornings before I left for work.  On the average day, following work, Pebbles would come darting out of the bedroom racing for the door of the apartment with the click of the lock before I even had the door open.  But on the Fridays that I got my chemotherapy, I arrived home earlier, and I definitely was not as receptive to the kitten’s greeting.  By the time I entered the door, I literally had seconds to get to the bathroom as one of the chemo’s side effects was kicking in, full blown nausea and vomiting.  This would last an hour, leave me completely wiped out, and with every ounce of strength that I had left, crawled into my bed without having stood erect from the toilet.

The kitten was definitely confused by the different routine.  By the middle of my second cycle, on Fridays, Pebbles still greeted me, but from the hallway directly in front of the bathroom.  She sat there as I ran by her, and stayed there.  I would make my way past her, into bed, pulling the covers tightly up to my neck.  And Pebbles followed, climbed up the bedding and layed on my wife’s pillow, staring at me, until she too would fall asleep.  She would stay there until my wife came home.

Animals are known to have great instincts when it comes to their family members not feeling well.  Some pets actually can sense when certain health episodes are going to occur.

Following my divorce and subsequent second marriage (first in my heart), we bought a dog, a golden retriever named Pollo.  Wendy and I have had him since a puppy and thirteen years later, is still a puppy.  He has a great disposition that being left alone for long periods of time while at work, he is still so ever happy to see me at the door, tail wagging, just glad to have me home. 

We had hopes one day of Pollo being trained as a therapy dog.  But the truth is, he was and still is, just too happy, happy being a puppy.  Approaching thirteen years of age, he is still the fun loving, energetic, tail-wagging puppy as when he first came into our house.  He has typical issues, like grass and snow deafness (cannot hear us call him), knows who to sit next to at the dinner table, loves being in the rain, and unusual for a golden, has a horrible sense of smell.  I often refer to him as my “box of rocks”.  But there is one thing that I can never tease him about.  He is loyal to his family.  When one of us does not feel well in the house, that is where you will usually find him lying next to.

Here are some examples.  One fear that I had coming home from having open heart surgery, was the sternotomy (the split breast bone).  Pollo and I are known to play “alpha” often, and we often get carried away.  According to my wife, he just moped around the house while I was in the hospital.  Even my then two-year-old could not cheer him up.  I was certain though that he would jump up on me when I came through the front door.  But as hard as his tail wagged, he never left his front feet.  While I recouped at home the next several weeks, he never left my side.

More recently, I have been having immunity issues with pneumonia.  Twice in the last nine months I have been hospitalized with pneumonia.  The only warning I have had was sudden and severe nausea, and inconveniently in the wee hours of the morning.  Each time disturbing the golden retriever during his golden slumber, and then, I was gone.  Just as with my heart surgery, the boy missed having me around the house.  But then, just before the end of the year, I had another attack.  Unlike the other two times, when my temperature hit over 103.5, this time my temperature was normal, so there was no trip to the emergency room as is my normal protocol.  I just fell back to sleep.

Unusually for me, I slept, a long time.  When I finally did wake up, it was after noon, with my wife sitting next to me.  She was holding her hand on my chest.  Then sticking her finger under my nose.  Then she started pushing around on my neck clearly looking for a pulse.  So I let her off the hook when I realized she was trying to see if I was actually alive.  She has been through this so many times in the last five years with me.  Relieved that my eyes opened, Wendy let me know what time it was and went downstairs.  I looked over to my side of the bed, and there he was.  My box of rocks was lying by my side.

I asked Wendy if she had let him out at all that morning.  She informed me that he never went downstairs even when she and the kids originally woke up.  He had been up with me since 11pm the night before, over thirteen hours, he stayed by my side.  Is it possible that he had seen me twice before go through the routine of vomiting, then disappearing for days, that after this episode, he thought that I would be gone for days again?

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