Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “September, 2019”

A True Miracle And A Happy Ending

Forget the Carpenters and the Boomtown Rats.  I am going to make your Monday with today’s post.

I did not realize when I decided to do this story, what today was on the calendar.  As it turns out, it was five years ago that I introduced Stephanie, a very young Hodgkin’s Lymphoma survivor and her incredible story, to Paul’s Heart.  I intend to keep this post the uplifting message I want it to be.  So if you want to see just where Stephanie started in her Hodgkin’s journey, click on the following link:

Stephanie’s Words (pictures included)

This is the first chapter written by and about my fellow survivor from my home state back in Pennsylvania.  I had known about Stephanie through her mother, and had asked her to put into her own words, what she went through, and share her story on “Paul’s Heart.”  That was five years ago today, that story was told.

A month later, I shared an update about Stephanie, as she had reached her 3rd year in remission.  As anyone who has faced cancer can tell you, the calendar can be cruel as we watch day after day go by, with us checking off, another day down, further away from cancer.  Hoping for the time, that our fight against cancer is no longer a thought in the front of our memories.

Stephanie’s Words – Update (pictures included)

The next chapter would was when Stephanie hit the magic mark, 5 years!  We shared the amount of family support that Stephanie had not only during her battle against Hodgkin’s, but in survivorship also.

A Celebration For Stephanie (pictures included)

As with many Hodgkin’s patients, especially the younger ones, we are dealing with or at the least in the planning stages of what was our normal progressive plan in life, one of the happiest times in our lives, while dealing with one of the darkest times.  Admittedly, getting married, as big a dream as it may be, takes second place to just wanting to get through this battle against cancer.  And a year and a half ago, Stephanie was not just well past her five year mark, but she got married.  And this was not just a wedding.  Stephanie married the same gentleman who had stayed by her side, her entire journey.

Go back and read these stories after reading this post.  Truly appreciate the miracle I am going to share with you.  And Stephanie can tell you, I have been very excited to share this news.

Probably the biggest concern for a young Hodgkin’s patient/survivor, is having a family.  And with that, I present the happy ending to Stephanie’s Words… a baby boy!!!!!

Cancer is one of the cruelest and most uncertain challenges we can face in life.  But we can never give up hope.  There are happy endings to many stories, and this is just one that I have been blessed to know about personally.  I know Stephanie’s mother and one of her sisters, and Stephanie’s son is not only a miraculous fairy tale, but will be smothered in family love from both the mother and father’s families.

And I know that there are several other “young” Hodgkin’s readers seeing this post.  Miracles can happen.  Stephanie is just one of many.  But now you can see one with your own eyes.

Congratulations to Stephanie and her family.

To Get The Shot Or Not

It is that time of year again, flu season.  And for many of us, we have a choice to make.  Do we get a shot to prevent getting the flu?  Or do we take a chance on not getting the flu or the shot?

The decision is an individual one, and for any number of reasons.  And it is not to be taken lightly.  First, I want to emphasize, I am not “anti-vax”.  I believe in getting the vaccine’s we had as children and perhaps optionally some of the vaccines considered today.  The problem for me is always going to be, have the long term side effects been studied on the vaccine?

If you follow my blog, you know this is a major issue for me.  Long term side effects.  Statistics reflect only a five year survival rate for Hodgkin’s Lymphoma.  Clearly, I am well beyond that mark heading toward my 30th year in remission.  Long term studies were not done on exposure to extreme levels of ionized radiation or toxicity from chemotherapy because we were not supposed to live this long.  Well guess what?  We did, and many of us developed side effects later in our survivorship, that were not expected.

You need to understand something.  Vaccines are not profitable for Big Pharm.  Unlike prescriptions that can last decades, vaccines are once and done for the most part.  The pharm company gets a one-time shot (no pun intended) to its revenue.  Vaccines can be rushed to market to meet an immediate need, and you know what that means… no long term studies.  This is one reason I am adamantly opposed to the Gardasil vaccine.  Sure, I can appreciate the fact that it may prevent one type of many types of ovarian cancer, especially since I have two daughters.  But what is known about the long term effects of having received the vaccine?  A legitimate question.  I am proof of living with the unknown, and the unstudied.

But every year, flu season comes around.  A new type of flu is the current concern, requiring a different flu shot than the previous year.  And the concerning thing, the flu vaccine of the year, does not prevent all types of flu.

Also every year, my doctors, not only my primary care, emergency care, but even the doctor I trust with handling my late effects, argue with me, to get the current flu shot.  And I understand the concern.

Like Jim Henson, and many other well known celebrities who have died from complications related to a compromised immune system, I have a compromised immune system.  Mine of course is from having had my spleen removed thirty years ago as part of my diagnostic process, and of course my Hodgkin’s Lymphoma.  There is a definite reason that if there is a vaccine to prevent the flu, pneumonia, menningitis, etc., and we have a compromised immune system, we should get the vaccine.

The vaccine world got even more complicated when scientists discovered using “live virus” vaccines.  The two most popular uses of “live” vaccines are the flu, and shingles.  Using “live” vaccines on someone with a compromised immune system can be fatal, at the very least, complicated even to exposure to someone who had received the vaccine.

When my spleen was removed thirty years ago, I received a flu shot, and a pneumonia shot.  Since then, and only during a two year period, I received multiple boosters of pneumococcal and menningicoccal vaccines as it was determined my body could not fight those illnesses at all.  The crazy thing is, I still got pneumonia… twice in one year.  Though to be fair, it was bacterial both times, not viral.

But I received only on flu shot since thirty years ago.  In fact, I received two.

In a one week span, I had received a pneumococcal booster, the regular current flu shot, and a swine flu shot during the year we had the huge epidemic.  And that would be the last time that I received a flu shot, ever.  I ended up with extreme side effects, which literally scared those around me.  I made the decision I would never do it again.  The arguments with me to get the shots continue.  And now, they are making it even more convenient for you to get the flu shot.

Okay, maybe I am being a bit sarcastic.  And shoot me for questioning the environment and quality control of storing and receiving a flu shot in a grocery store.  But are we that far off then from convenience stores and drive thru’s?  After all, your arm is already sticking out the window.

I know the risks that I am taking.  One of my doctors put it as bluntly to me as he could, listing the many celebrities with compromised health issues and have died.  I am a soon-to-be thirty year survivor of Hodgkin’s Lymphoma, with a compromised immune system.  I have rolled sevens twenty-nine straight times.  I have had twenty-nine straight winning hands of black jack.  I have won twenty-nine straight times against the one armed bandit.  What are the odds that my luck can continue?  A compelling argument by my doctors, and combined with those that we have lost, the decision should be a no-brainer.

But at least for another year…

Chemo – Day One, Part 1

This post continues my journey towards 30 years in remission of Hodgkin’s Lymphoma.

The time had come.  After eleven months, several diagnostic procedures, and failed radiation treatments meant to avoid this day, it was finally here, my first day of chemotherapy.

I have always been a planner.  Prepare for the worst, hope for the best.  I had read up on all the drugs that I would be injected with, and the potential for side effects.  I knew the two side effects that I had seen so many times in movies and on television, nausea and hair loss.  All I had to do was get this thing started.

One of my biggest faults, is that I am always considerate of others before my own needs.  And this day was no different.  And I did my best to make sure of it for the next eight months.  My attendance at work was rarely impacted during my radiation treatments, to the first hour of each morning, allowing me to work the rest of the day.  For my chemo, I had to plan differently.

I would receive seven different drugs, four during one injection, then a week later, a second injection would be given with the other three drugs.  My appointment was the last one available on a Friday, meaning I would only miss an hour of work, twice a month.  Expecting to be violently ill following the treatment, I would have the weekend to recover, as the time period between the injections was meant to do just that.  And that would be the plan for eight months.

I woke up that Friday, made my breakfast and lunch.  And in spite of me not having any appetite for obvious reasons, I knew the poisons that my body would be taking in, and I needed to take in as much nourishment as I could to give me my best chance of getting through these treatments.  It was not until past noon, that I was no longer able to distract myself from my appointment in less than three hours.  At 2:30pm, I punched out of work, got into my car, and drove to my oncology office.

My routine at the oncology office was pretty much the same.  Go into the lab to have blood work drawn, then go into the exam room.  Today would be different.  From the lab, I would go into the chemotherapy room, where there were two chairs for patients.  I would never see anyone else in the other chair my entire time though I knew I was not the only patient being treated.  It was a very plain room.  You could see outside the windows to the hospital across the street.  Other than the supplies in the room, it was going to be just myself, and my oncology nurse, Brenda.

For those that have never seen what a typical chemotherapy suite looks like today, these pictures show that.  The room is bright and large, filled with other chairs for several patients, all being treated.  There is entertainment by visiting troubadors and televisions, and visits of the non-human variety meant to bring a little cheer into such a dismal environment.  There is even an aroma of food as patients actually eat while receiving their chemotherapy.

But I did not have that relaxing environment to get through my treatments.  Instead, I had been reading a book called “Positive Imaging” by Norman Vincent Peale.

The book emphasized that getting through difficult situations, we possess a power to help get us through our difficult times, by imagining not only the success, but how we get to that point.  And I was going to use that same thinking to get me through my treatments.  My goal was to not only imagine myself finished with treatments and in remission, but to even picture the chemotherapy drugs fighting each and every cancer cell.

To help with that process, I went to this appointment, and all the others after it, with my Walkman.  For all of you too young to know what this doohicky is, back before you had the Ipod and MP3 player, you had this box that played cassette tapes, and later CD’s, again, I know you may not know what I am talking about.  So let me make it simple.  It played music.  But not just any particular music.  I supposed I could have put soft and mellow meditating type music into it.  But after reading the book, I wanted fighting music playing.  If you could work out to it, fight to it, it was on there including “Eye Of The Tiger” and other Rocky soundtrack music.  And for good measure, I even put this song on there…

Why “Pacman Fever?”  Because every time the song came on, I imagined the chemotherapy eating up the cancer cells just Pacman gobbled up dots.

Yes, I would have had a much easier time getting through my treatments with chemo suites of today, but I did what I could, with what I had.

My oncology nurse, Brenda, came into the room, with her prepared syringes, saline bags, and IV line.  Her face was sullen which I was not used to seeing that way.  She was in her mid-40’s, I believe, short and frosted hair, glasses, and always had a pleasantness supported by her smile.  She put her tray down on the table top next to me, and pulled up her stool.  At this point is where she told me that she had a son my age.  And now I could understand her sullenness.  And just like I thought of my co-workers, my fiance, my family, I had another person that I could not let down.

The IV line had been inserted into my left arm.  It was time to begin.

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