Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

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.

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.

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.”

 

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