Paul's Heart

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…

Preparation For Chemo – Part 3

Of the three parts of this series, I have saved the most important for last.  Why?  Because there is no factor more important, than the mindset of the patient, especially as they head toward a fork in a road, where both roads are a potentially fatal choice.  One will kill you for sure, the other has the potential to kill you.

My team of medical providers seemingly complete, I went to my pre-chemo appointment to make my final arrangements  to begin.  All of my testing was done.  What happened next, I was not prepared for, and evidently neither was my doctor.

I checked in with the receptionist, and sat down waiting to be called back to the exam room.  As always, there was a stop by the lab to draw my blood, and into the second exam room on the left I went, with a legal pad under my left arm, a pen clipped to the pad (we did not have smart phones to record conversations, had to take any notes the old fashioned way).

I had chosen Dr. M to treat my Hodgkin’s Lymphoma for one reason only.  Though I referred to him as older than dirt, he did cure my grandmother of her breast cancer just five years earlier.  I could overlook him being long in the tooth, and the fact that the bedpan had more of a personality than he did.  This was going to be the guy to get me through this ordeal.

Dr. M. closed the door and sat down on his stool in front of me.

Dr. M:  So, we have gotten all the preliminary testing done.  How did you make out with the sperm harvesting?

Me:  They said there was not enough to be worth storing.

Dr. M:  You should have insisted anyway.  One could have been enough for you to have a family.

Me:  But, I…

Dr. M:  Ok.  Your heart scan and lung tests came back good.  They will be able to tolerate the chemotherapy plan.  It’s my understanding you would be okay with starting Friday (2 days later)?

Me:  Yes.  Because I would not have to miss much work for my treatments.  I would just leave an hour early from work, and have the weekend to rest before going back to work on Monday.

Dr. M immediately began to stand and walk towards the door, appearing to have finished our appointment.

Dr. M:  Very well, that is okay.  Will see you Friday afternoon.

Me:  Excuse me doc?

Dr. M turned around having already mentally concluded the appointment.

Me:  I have some questions about going through the chemo.

Dr. M slowly and hesitantly turned around, looked at my left hand, which had now exposed the first page on the legal tablet to be full of writing.

Dr. M:  What is that?

Me:  Like I said, I have some questions.

Dr. M had not even seen the second page of questions.

Dr. M:  Are you serious?  I don’t have the time to spend with you answering all that.  You will have to talk to the nurse.

And Dr. M walked out.

As I mentioned earlier, my team involved with reaching my cure, was almost complete.  Dr. M did not realize, or did not care, there was another member of the team.

Dr. M did not acknowledge me as a team member.  Without me, there would be no treatment.  Yes, I know that would mean that I would die.  But I had serious questions about being given drugs that were so toxic, that were going to not just kill the cancer cells, but many of the good healthy cells in my body as well.  Going through chemotherapy is not just a physical battle, but a mental one like none other you face in your life.

I was not considered part of my team by Dr. M.  And that is where he was mistaken.  In this case, and others like mine, there is actually an “i” in team.  And yes, I know the punchline, it is in the “A hole”.  And the minute you start to advocate for yourself, the reaction is to actually respond to you as if you are being an asshole.  But there is no doubt about it.  I was a member of the team, the most important member, not just because I was the patient, but because without putting the fires out in my mind of all the concerns that I had, I was going to die.  Just because a doctor did not want to answer my questions.  And yes, I acknowledge there were a lot of questions, and they all pertained to what I was about to go through.

For my own sake, I, and I repeat, I was a team member, I needed to advocate for myself.  If you remember anything from this post, or anything on “Paul’s Heart,” it is the importance of advocating for yourself.  In most cases, it will make a difference, especially if you do not have the confidence in others to get your through your difficult time.  You must do what you need to do, to get through.

I was about to break down completely as a nurse walked in.  She introduced herself as Brenda.  She did not give her last name.  She was old enough to be my mother, a fact that I will talk about later in another post.  She introduced herself as the nurse that would be administering my chemotherapy.  I did all I could to fight back tears of fear.  Because at this point, I was prepared to die, preferring quality of what would be left of my life, rather than dealing with the uncertainties that could come because of chemotherapy.

Brenda:  Good morning Mr. Edelman.  My name is Brenda.  I am your chemotherapy nurse.  I understand you have some questions that you would like answered before we begin.

This did not begin the way I thought.  Dr. M said he had no time to talk to me about my questions.  So he sent someone in to do it for him?  No.  I wanted the doctor, not a nurse.  I wanted the knowledge, not the routine.  As if she knew where my mind was at, the doctor had the personality of a bed pan, she spoke:

Brenda:  Dr. M is a good doctor.  He is also quite busy.  And he does care.  He just cannot show it.  He cannot open himself to personally caring directly with a patient.  Dr. M deals with a lot of patients.  Many survive.  Some do not.  He has been at this a long time, and he has lost a lot of people he has cared about, and it is his demeanor that protects him from any further hurt.

Me:  That’s all well and good.  But I need to know what is going to happen to me.  He saved my grandmother’s life.  I trusted him.  I thought he would care.  I no longer feel that way.

Brenda took the time to answer ALL of my questions, two pages worth.  Questions that dealt with the drugs in the chemotherapy cocktail, side effects, what to do in the case of…, and more.  And after nearly an hour, she offered me one more suggestion.  She heard something in the questions that I had asked, and the comments that I made.  She recommended one more member for my team.  Someone to talk to.  Someone who had experience with patients who struggled not only with their diagnosis, their treatments, but their survival.

I had one more appointment to make before that Friday.