Paul's Heart

Life As A Dad, And A Survivor

Then And Now – Final Day Of Treatment


Today’s post is dedicated to a young man in Southern Florida.  I am not using his name to protect his privacy.  I have never met this “kid” in person (at age 23 he is just a kid), only through the internet.  He was diagnosed with Hodgkin’s Lymphoma, just as I, at around the same age as I.  I learned of him as he was completing his second or third treatment.  Tomorrow, he will receive his last treatment.  I will be anxious to hear of his every moment from the impressive milestone.

The day had finally arrived.  It was a week late because the prior week, my blood counts were too low.  The option was to modify the chemo for that week, or delay the treatment a week and see how I feel, or just cancel the treatment all together.  The doctors decided that it was best for me to delay my treatment for one week.  I had done so well up to this point, had gone through 7 1/2 cycles.  I needed this one last set of infusions, and I would have solidified my chances of surviving Hodgkin’s Lymphoma.

That Friday, March 3, 1990 began just like the other Fridays of treatment.  I would go into the oncology office, by myself.  My name would be called twice.  The first time was to do bloodwork and confirm that I could handle going through the final treatment.  I had been cleared.

The second time that my name had been called, it was to walk back to the chemotherapy suite.  As usual, my oncology nurse Brenda was busy setting up all of the syringes.  I sat down in the chair and began to roll up my sleeves.  I was not sure which arm would be used.  I just know that my veins had been destroyed by all of the chemicals that had been used to save my life.

Brenda turned around, looked at me and asked, “you ready?  You have finally gotten here, the end.  This could not have been easy for you.  These are such hard drugs to use.”  I gave her an agreeing nod, and like that, she had already stuck the needle into my arm.  Half of the cycle resulted me dealing with nausea, the second half, did not give me any problems.

And so over the next hour, I received my final treatment.

After the last drip, Brenda began the process of removing the catheter from my arm.  “Now Paul, when you get up from this chair, you have to imagine that there is a marching band playing for you, in triumph.”  My eyes lit up and all of a sudden, I could “hear” the band as I walked down that long hall from the chemo suite, for what I was determined to be the last time.

With the internet today, over 23 years later, internet support groups now make a daily post announcing those who are completing their treatments.  And today, there are pictures of these milestone.  Someone is either holding a sign announcing the date and the event, or many hospitals have a huge bell that is rung each time a patient completes their treatment.  Even more impressive, is that every day, people join the millions of cancer survivors, MILLIONS!  Unlike 23 years ago, I know many of these survivors.

Tomorrow, my friend will complete his treatment, twelve cycles, countless injections.  This is no easy fete for anyone to accomplish.  The physical toll is nothing compared to what the mental toll can take through the whole experience.  From the fear of death, to the frustrations of having ups and downs, and no way to control them, the emotional toll can be brutal.  He was blessed during this journey with having the strongest support than I can ever recall.  As I went through my battle, I remember often the times that I said “I wish I was younger so that my parents could have made the decisions about this cancer for me”.  His mother has been by his side from the first moment.  As a parent myself, I cannot imagine having either of my children have to face such a disease.

But Dude, you have done it!  You have gotten to your final treatment.  You have done it with courage, strength, and determination.  The support of your mother, sister, grandparents clearly played a roll in beating this cancer.  Tomorrow is your day.  Congratulations and this is for you…

“As I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.”  This is a quote that I often write to many who recognize such milestone days in their battles with cancer.

It is over 23 years for me.  I wish you the same lengthy and healthy longevity that I have experienced.  Good luck tomorrow.

Your friend, Paul

The Dentist


Being diagnosed with cancer and having to go through chemotherapy, pretty scary, right?  Having to undergo open heart bypass surgery… definitely scary, right?  But going to the dentist, the anxiety produced is more than the total I felt between the cancer and heart surgery combined.  That is right, up until one point, I was more terrified of going to the dentist than when I had gone through cancer treatments and laying on the table next to the machine that would keep my body alive while the bypasses were performed.  And believe it or not, there actually is one good reason to be concerned about going to the dentist, but not what you think.  My reasons for delaying my appointments bordered on ridiculous.

My earliest memories of the dentist were not too bad.  Sure I had cavities, but Dr. Weaver was good working with kids.  My first reaction to receiving novacaine did not go well as I reacted like an eight year old might, legs thrashing about in pain.  A little nitrous oxide took care of that.  To make sure that the laughing gas had taken effect, I remember Dr. Weaver taking aim at an airplane mobile hanging from the ceiling in the corner, with his water gun which would be used to irrigate my mouth as needed.  But in the years that followed, I had no issues with getting to the dentist, or having cavities.

But somewhere along the road, a fear, and anxiety developed.  I cannot even explain it, but it led to me not being seen for over six years.  And even then, I had gone through two more dentists due to the fact that I had moved to a new city, plus, that same anxiety was becoming an issue.  I cannot say that at that point, my long term cancer survival issues had played any role, because those late developing side effects had not appeared.

In 2008, eighteen years after my diagnosis of Hodgkin’s Lymphoma, I faced open heart surgery.  All went well, and I was introduced to the world of long term cancer survivors and the many issues that many face due to the toxicity of what we were treated with.  I had broken a tooth.  I knew I needed to get seen before anything went wrong, such as an infection, so made the call to a local dental office.  It was during this appointment that I met Dr. P.  She is a young woman, but very skilled, knowledgable, and empathic with her care.  She had advised me on the risks I face, sepsis with the abscess that had been discovered examining the broken tooth.  An infection in the blood (sepsis) traveling to the heart, can be fatal, possibly within hours of being discovered.  To make matters worse, from my diagnostic plan in 1988, my spleen was removed to see if I had signs of Hodgkin’s Lymphoma in the spleen.  This procedure left me “asplenic” which means that I cannot fight off infections, or as well as a normal person.  She had mentioned root canal for this tooth due to an abscess, followed by a crown.  My anxiety level hit the roof, and out the door I went as I decided to just have the tooth pulled as this was going to be needed to be done by an oral surgeon.

Following the tooth extraction, despite knowledge of how important good dental hygiene is, especially to a heart patient, I made a conscious decision not to return to the dentist for regular check ups.  I had done a lot of reading concerning the issues of not just asplenic or cardiac issues, but how frequently heart issues are discovered just by going to the dentist.  Simply put, if you are someone who does not floss regularly (and who has not gone to the dentist and not been asked or told to floss regularly), it is not just the risk of gingevitus developing, but the bacteria could just end up in your bloodstream, leading to sepsis.  Septic shock is fatal if not caught soon enough.

It had been a couple of months past the six month check-up window that had been assigned to me.  I just kept delaying the appointments.  Then something strange happened, and often.  Until I finally relented the phone calls kept coming.  It was Dr. P calling personally to follow up on me, and the importance that I get into her office to be seen, regularly.  To make sure that I understood her sincerity, she hit me where it would make me pay the most attention.

Dr. P. acknowledged my late term side effects, and the concerns with the jaw, mouth, and teeth due to the various treatments I had received for my Hodgkin’s.  She stressed that it was important that I come in for the regular cleaning and check-up.  I actually lost count on how many times she called me personally.  But Dr. P. was not going to give up.

When I finally made the decision to come into her office for the cleaning and check-up, Dr. P. took the first half hour of my appointment, just listening to me.  Listening to me babble on about my irrational anxiety about going to the dentist.  In what may have been her last opportunity, she began a discussion about pain management.

When you get a tooth cavity filled or the tooth itself pulled, the dentist has various means to numb the nerves and surrounding gum area to eliminate or minimalize the pain.  Dr. P. does not use nitrous oxide, but she does use Ambesol along with novacaine.  The Ambesol topically numbs the gum area to be injected.  The novacaine will do the rest.  But what if you have not been given enough novacaine?  You ask for more.  The chances are probably close to 99% that you can have a booster of novacaine, in fact, several boosters if that does not work.

It has been three years since Dr. P. convinced me she was not to be stressed about.  During a recent visit to have a cavity filled, my gum was not cooperating and it took seven stabs of the novacaine before she could proceed to fill my tooth.  But she took that time.  I trusted her.  I think I am finally over my dental anxiety.  As a cancer survivor exposed to radiation therapy to my lower jaw, the structure of my upper and lower jaws is crucial.  And she knows that.

A New Leaf


A while back, I wrote a story called “CABbaGe – Not Just A Green Leafy Vegetable”.  It was a play on words mixing the vegetable cabbage with the heart bypass, called Coronary Artery Bypass Graft.  This was the second life changing event (the first was my cancer), that should have resulted in the major lifestyle changes, diet and exercise.  While initially, the shock did have me eating foods I would never have been caught eating, the novelty wore off.

For the last five months, I have made major eliminations to my diet, no more soda, no more fried and fatty foods, and no red meat.  This is an effort to cut down on flare-ups from complications of my Hodgkin’s treatments decades ago.  But it has not been a good enough.  I still have not been getting the right amount of calories, protein, carbs, etc.  Several weeks ago, among everything else I have been dealing with my health, I finally heard the words, “you are pre-diabetic”.  Then again, why should now be any different?  It has to be.

So, another egg is put into the basket of care that I receive up at Memorial Sloan Kettering Cancer Center, dietary.  I am assigned to a dietician who has knowledge of my health history, the knowledge of therapies that were used to treat me, and the late developing side effects that I have been dealing with.  That was the good news.

Now for the bad news.  Her assessment of me, my habits, and my history, of six major health concerns with diet and weight, I am at increased risk of five of them.  Wait, I already deal with them:  esophageal issues, heart disease, diabetes, high blood pressure, and sleep apnea.  All of these affect a persons health and increase risks by themselves.

Now for the better news.  Though this is now the third time I am attempting this.  But this is the first time that I feel I truly have a dietician in my corner.  In fact, she has assured me the aggressive approach that she plans to use with me to get my weight down.  She knows the risks I face if I do not follow through.  She cares.

For now, the first phase is about getting me to do something I have not done in a long time, eat regularly.  It is not about eating certain foods, but getting the right amount of calories into me, and getting the right amount of exercise.  The line has been drawn.  I will be following up with her in six weeks.  Though I cannot control what my treatments have created, I can prevent anything else from developing.

Then it will be on to the next phase, getting me to eat things I have forever turned my nose up at.

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