Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

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.

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Preparation For Chemo – Part 2


So the first pre-chemo testing I underwent was for my future life after cancer.  The next set of testing was to determine my body’s ability to tolerate two particular drugs in the chemo cocktail.  Newbies will likely recognize the drugs, Bleomyacin, and the other, Adriamyacin.  I would be given seven total drugs, four at one appointment, the other three the following week.  Both of these two particular drugs would be administered in the second week of the cycle.  Blood tests would be done weekly for the duration of my treatment schedule, eight months, or “cycles” in the cancer world.  Any delay makes it longer than the months, so that is why “cycle” is used.

As far as the drugs and what they do, what they cause and such, that will be in an upcoming post very shortly.  But in preparation for the chemo, what you have read here, is basically all the knowledge that I had at the time.  All that was explained to me, was that the two drugs mentioned above were known to potentially cause issues to the body.  Adriamyacin could have an impact on the heart, and Bleomyacin could affect the lungs.

Now here is where progress has changed from 1989.  In 1989, the tests that would be administered to me, would be for the purpose of seeing if my heart and my lungs would be strong enough to take the pounding from the drugs.

A MUGA scan would reveal the blood flow in my heart.  A pulmonary function test would determine how strong my lungs were.  Again, it was this simple.  With both tests completed, and results negative, chemotherapy would begin as soon as scheduled.  As expected, I had no issues with either test.  My heart was strong and so were my lungs.  Chemotherapy would begin in days.  I was handed several pamphlets with information on the drugs I was going to be given and my appointment was made.

And that is what I knew then.

This is what I know now.  One of the few times I will spoil my story (you already know my long term health issues from my treatments), this is what these tests now provide.  Yes, they still confirm that your body is strong enough to take these drugs, but they also serve as a “base-line.”  In other words, the numbers on these tests, will be compared following future cycles, and if anything comes up like complications.

You see, the Adriamyacin, though critical in the standard treatment regimen, has the potential for damaging the heart so badly, you could end up with CHF, congenital heart failure.  The drug damages the heart so badly, that if left undiscovered, a heart transplant is necessary.  And you cannot get a heart transplant for up to five years post-chemo.  Unfortunately for me, and for those not considered “newbies,” we were not followed up this way.  Whatever happened at the end of our treatments happened.

But I reported on an earlier post a long time ago, technology available, that can discover this damage after the first or second treatment, before it gets too bad.  This would allow either a modification of the dose, or use of a different drug.  A simple ultrasound after each cycle can keep track of this progress.  To be fair, this issue affects only roughly 5% of the patients, so until recently, it was not considered that big of a concern.  That is, unless you are one of the ones facing CHF.

Both tests are easy to go through.  They are non-invasive, and over in minutes.  But the information that they provide prior to, and now during, and after, is critical.

In part 3 of this series, an epic showdown with my oncologist that almost stopped my treatments.  One of the few times I have been able to prove… there is an “I” in “team.”

 

Preparation For Chemo – Part 1


So, I am a little behind in my “30th anniversary” journal, because by September, I was already in my second round of chemotherapy.  I was happily engaged with the Summer visit with my daughters.

To recap, diagnosed with Hodgkin’s Lymphoma in November of 1988.  I underwent all kinds of tests and procedures to determine how bad it was.  I opted for 30 treatments of a ridiculous amount of radiation therapy which by the end of March 1989, I got to hear the news that I was in remission.  Got married in May of 1989.  I went on my honeymoon.  Followed up with my oncologist in June of 1989, only to find out that I had evidence of new Hodgkin’s.  The decision was out of my hands.  I was going to undergo chemotherapy.

And so begins Part 1 of this post.  Chemotherapy.  If there is one word in the English language that scares the shit out of anyone who has ever heard of the word, without even having to go through it, is “chemotherapy.”  We all have the similar immediate thought when we think of chemotherapy, violent sickness.  We can thank movies and television for this, because that is how it is portrayed.  There is no entertainment value in explaining the importance of chemo, what it does and how, and how it can be managed.  The truth is, there is a lot to be aware of before chemotherapy can even begin.

At this point, I want to stress, the chemotherapy plan that I underwent, is hardly, if ever used anymore, except possibly as a last resort.  Progress and newer methods of treatment have resulted in safer and better results.

I was 22 when I was diagnosed, and by the time I was to begin chemotherapy, I was 23.  A young male.  I was not really thinking about anything other than beating this thing once and for all.  But as it is explained to every cancer patient, chemotherapy works by destroying cancer cells.  However, it not only destroys cancer cells, but it also affects good cells.  For men, that includes sperm cells.

I can tell you, that after 30 years in this world of cancer, and the many people I have met or talked to, fertility is a major concern, but oddly only for one gender.  In fact, the younger generations, those in their 20’s and 30’s, women’s top two concerns are being able to have a child and losing their hair.  Men do not really think about it.  But the doctors do think about it.  And because of the risk of infertility, the doctors recommend taking measures to preserve the ability to have children, no matter what.

I have a long time friend whose son went through Hodgkin’s treatments, different than mine.  He was 19 at the time, so as an adult he could decide what he wanted to do.  Much to his mother’s horror, who had one day dreamed of being a grandmother, he stated that preserving his ability was not important to him, because he was not going to have children.  While he may have felt that way at the time, we all know that at the age of 19, recognized as an adult, we do not have all the life experiences yet to be able to determine what is best for us, and a long time to go in our lives, unable to change our mind.

Amongst the chaos, I was still able to understand the importance of what my oncologist was trying to get across to me, that a particular chemotherapy drug in my cocktail, had the likelihood of rendering me unable to get anyone pregnant.  Being a newlywed, not the thing either I or my wife wanted to hear.  But the directions were clear, I needed to preserve sperm prior to beginning chemo, if I wanted any chance of having biological children.

There was a company in East Orange, New Jersey that dealt with storing sperm.  This would be different than just going to a lab, and taking care of business to have motility (the ability of the sperm as well as availability) determined.  The process was simple.  The company shipped out a special insulated container, do the deed, and ship it back.  Results would determine if I was able to have children or if it would even be worth pursuing.

disclaimer – AND YES I AM USING ALL CAPS… THAT IS NOT ME IN THE PICTURE.  Just so we have that clear.

As a teen, as a young adult, who am I kidding, I have never had a problem with rising to the occasion.  Except for one time.  The one time when I needed “it” to work, it would not.

Having tried to manage the situation on my own and having no success, I asked my wife for some assistance.  In a crushing blow to her self-esteem, the effort resulted in the same situation, unable to complete the task at hand, or rather… in hand.

All kidding aside, the pressure on me at that very moment, that the future of any further generations was at that crossroad, but also, I was dealing with the fact that I was facing cancer and could die, and at the least, chemotherapy was going to be the most challenging thing I would ever endure.

Several hours later, and no longer trying, my wife had surprised me with an attack, my mind no longer focused on what needed to get done, but at that moment what I wanted done, the pressure was off, and with the lid on the container closed, so the sample would be off to East Orange to determine my fate.

Only one thing left to do, and as if a page out of Seinfeld itself, I faced public humiliation over what came next.

My “package” had been sealed properly, and placed inside the medical container to be shipped.  The Fed Ex driver knocked on my apartment door, to pick up that package.  Even though shipping concerns were not that big of a deal back in the late 1980’s, that did not prevent what happened next.

Fed Ex Guy:  Mr. Edelman?

Me:   Yes

Fed Ex Guy:  You have a package for pick up?

Me:  Yes I do.  Here it is.

Fed Ex Guy:  What’s in it?

Huh?  That was kind of rude.  What the hell business is it of his what is in there?

Me:  Just something that has to go to East Orange.

Fed Ex Guy:  It is in a biohazard medical container.  I need to know what’s in there.

At that point, I am thinking, “biohazard?”  My sperm is equivalent to nuclear waste or botchulism?  Trying to find the least embarrassing way to answer his demand, which in spite of me feeling he had no right to ask me, we were at a stalemate if I did not.

Me:  IT’S SPERM!  ALRIGHT?!?  YOU HAPPY NOW?

I think he definitely regretted asking me as his head lowered to the floor.  The box was clearly labelled.  And he knew how to handle packages like that.  In the end, he left grossed out, and I embarrassed.  The he left, and I closed my apartment door.

The results had come back.  I did not have enough sperm in the sample to recommend “storage”.  I would not be able to have biological children if my fertility did not survive the chemotherapy.  Upon hearing the news, my oncologist still insisted that I store whatever I had, even if only one.  I explained to him that the facility would not do it.  And once again, I heard the “time” speech.  I did not have time to seek out another facility.  Treatment needed to begin, and soon if I wanted my best chance at success.

Next up… Part 2… more tests.  Then a major fight with my oncologist just before treatment begins.  Followed by Chemotherapy Mixology 101.

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