Paul's Heart

Life As A Dad, And A Survivor

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Chemo – Day One, Part 2

The following is a continuation of my series, recognizing my 30th year as a Hodgkin’s Lymphoma Survivor.  This post subject matter includes dealing with nausea, something that we had no help with thirty years ago.  Whereas today, nausea is often no longer an issue because of how it is controlled.

With the IV placed into my arm, quite easily I might add, Brenda, my chemotherapy nurse would now turn her attention to the tray to my right.  There were many syringes on this tray, some filled with saline to help “flush” the line feeding my veins, four other syringes filled with the half of the treatment cocktail, that would hopefully save my life.

Before I go further, I want to recognize the oncology nurse.  I wrote in an earlier post, about the lack of empathy from my former oncologist, and the excuse being given to me, “how much ‘death’ he has to deal with each patient, along with his other patients.”  Brenda, as do every other oncology nurse, was going to be spending the next several hours with me, knowingly injecting toxic medications into my veins, over a period of months.  During all of my treatments, Brenda and I would have many discussions, some cancer related, some general conversations, and others directed toward emotions.  Looking back, I have so much respect for Brenda and all of the other oncology nurses, because it is they who deal with the every day events of the patients.  They are the ones that put their emotions at risk, exposing themselves to feelings and concerns.  They are the ones who really deal with both the successes and losses of a cancer patient.

I could see the expression on Brenda’s face.  My case was too close to home for her, as she had a son around my age.  While I never had any doubt that she would give me the best care she could, her mentioning her son to me, as well as the teariness in her eyes, I knew she was going to take really good care of me.

To be honest, I do not recall the order of the drugs given to me.  And the only thing I recall is that I knew she had to take care with one of the drugs as far as delivery, slow enough not to blow out the vein.  Though I had my headphones one, I would turn the volume down to allow me to hear what the next instructions would be.

The first drug injected into me, was horrific.  Not from a pain standpoint, but it was a drug that I could taste, and from my veins that made no sense to me.  It was a metallic taste, and it was nauseating.  One side note, we did not get any kind of medicine to help with nausea back in 1989.  I was about to be dealing with the one side effect I had seen played out on TV and movie screens.   Brenda could tell I was uncomfortable with that particular infusion, and assured me that it would not last after it was finished.

At that point, I just came right out and asked, “so how much time will I have before I puke my guts up?”

She told me that I should expect to make it home in time following the end of the treatment.  Though after how that drug made me feel, I was not too sure.  I had a “barf” bag on me, just in case.

I turned my music back up, and put myself mentally into a place, where I could use that imaging technique, to actually picture the chemotherapy, attacking the cancer cells.  Stunning them, knocking them silly, as the next drug to be delivered would be another solid jab to my cancer.  I would not taste this drug, but I was warned by Brenda, that it would like make me pee “red.”  Not to confuse it with blood.

Again, I turned the music louder, this time, wanting to drown out any more directions from Brenda.  Because each time she wanted to talk to me, she took me from the “place” that I needed to be, to tolerate what was happening.  I would get through the remaining two infusions without even realizing it.  Three and half hours after I arrived, I was finished with my first treatment.

I lived only twenty minutes from the oncology office, without any traffic.  So far, I was not feeling any wave of nausea that I had been dreading.  It was going to happen.  I made it home, and climbed three flights of stairs to my apartment, now fumbling for my key to the door.  “It” was coming!  And fast!  I finally got the key into the lock, turned it, opened the door.  I tore off my jacket, dropping it onto the floor, and raced toward the bathroom, just fifteen feet away, down the hall from the door.

And that is where I would be for the next half hour.  It had been just as I had viewed in the movies and on the television.  Once everything had been brought up, my body still felt the need to vomit, but it could not.  That did not stop it from trying, which is called dry heaving.  I was exhausted.  My stomach muscles felt as if I had done 10,000 situps.

As I lifted my head up, reached for a hand towel above to clean myself up, I saw a figure out of the corner of my my left eye.

It was my cat, Pebbles.  She was adopted back before I went through my radiation therapy.  Apartment regulations would not allow a dog, which is what I really wanted.  But, they did allow cats.  Because of my belief in the power of “pet therapy,” and its relation to healing, Pebbles would eventually be described as my chemo cat because of the care she would give me, once I got done in the bathroom.

I honestly believe animals know when we are not feeling well.  And she really did look confused as to the way I was using the toilet.  But as I stood up, washed up, I then made my way to my bedroom, totally worn out.  I climbed into my bed, fully clothed but now shivering, either from being cold, or from feeling so weak from what I just experienced.  Pebbles jumped up on the bed with me, and laid down on top of the pillow next to me, my wife’s pillow, until she would come home from work.  Strange as it may seem, it made me feel safe, that someone was watching over me.


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…

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