Paul's Heart

Life As A Dad, And A Survivor

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30 Birthdays… 30 Years Of Hodgkin’s Lymphoma


Continuing on with my 30th anniversary posts of my diagnosis of Hodgkin’s Lymphoma, I will not lie, my birthday thirty years ago really sucked.  When asked what I wanted, only one thing, and it could not be bought… a cure.  And though thirty years of remission has happened, it came at a price to my health with long term side effects that developed from the treatments I received.  For many of us long-termers, we often find ourselves wondering, was it worth it?  Would I do it again?

My answer is yes.  Reflecting back on things that have happened over 30 birthdays since I was diagnosed, not only would not have happened without the treatments, but I have to even give the experience of having had cancer, to making me who I am today and giving me the blessings I have experienced.

First, I have met well over a thousand other cancer survivors whom we have all shared our stories with.  Each on as inspirational as the next.

For a time, my career involved working in medical research, not only dealing with one of the chemo drugs I was given as a patient, but other cancer studies as well.

I regained my love to write, and have contributed articles as well as stories of cancer issues and survivor issues.  In fact, one of my stories was actually performed live!!

You can actually find the story performed, “My Dad Was Just Like Me” on Youtube.

Doing the unthinkable, I took on politics briefly, campaigning twice for school board.  It was a local election, which provided enough excitement for me, and it was the success of the first came, literally by a less than a few hundred votes short, that gave me the hope to run again.  It was an exhausting but very rewarding experience.  Unfortunately, it also did give me a behind the scenes look at politics, which I am not a fan of.

But the most important events in my life, of my thirty years of survivorship, came when I adopted my daughters.  They are my reason for living.

They are the reason, when my doctors tell me, they want to make sure that I see them graduate, perhaps get married, and maybe even have grandchildren, I will do my part as well.  And to do that, means that I will obviously be celebrating many more birthdays, and many more milestones.

But I would be remiss, if I did not mention, I do miss so many who have passed on, not just from this horrible disease or its effects, but everyone.  I wish you could be with me today.

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The Progress In Diagnostics In 30 Years


If there is one comment that I do recall, besides being “lucky” to have gotten Hodgkin’s Lymphoma, it was that Hodgkin’s was very treatable, especially when caught early and dealt with quickly.  “Time is of the essence,” as they say.

During my meeting with my oncologist, besides explaining the different possibilities of being treated:  chemotherapy, radiation therapy, combination of both, there would still be a process that I would have to undergo to determine my treatment options.  The same is determined, with some differences in other cancers, a process called “staging”.  Simply put, “how bad is it?”

Obviously, I could have been really lucky and only been Stage 1, with just a single node.  So far, at this point, only one node was biopsied, blood work was not showing anything, and a CT scan had not shown anything.  I was hopeful with all of the other results.  And just like not knowing what a hematologist was at the beginning of this series of posts, I had no idea of the things that were about to be done to me, to make sure I was properly “staged.”

Before I get started, for those who have no experience in being diagnosed with a cancer, this may be both interesting and intense.  For those who have been recently (as in years) diagnosed, you may breath a heavy sigh of relief that you did not have to go through some of these things because of the newer technology (like a PET scan to actually determine your “stage”).  And those of us who are “long in the tooth” of our survivorship, we still remember all too well what we went through no matter how many decades ago it was.  Needless to say, I am happy for the easier diagnostic methods available today.

The plan had been to get me started on treatment before the new year started.  Yep.  I had a lot to go through during the holiday season.  Just one of many reasons I do not like to celebrate this time of year.  The first thing I had been scheduled for, was something called a lymphangiogram.

Just like you have blood vessels that carry blood through your body, your lymph system also connects all those nodes in your body to other organs and such through a similar highway, but much smaller.  So small in fact, that they lymph vessels are so difficult to see.  Unlike a tech finding a good vein to draw blood from by seeing it, in order to find this lymph vessel, you need optical enhancement support to help you see them, and it also cannot be done by just looking through the skin.

The doctor needs to be able to inject an agent into your lymph system to “light it up” on an x-ray to see the entire lymph system.  The end result is quite cool, seeing every lymph node glowing in your body.  The down side to this process, the substance is injected through your feet, by way of inch long incisions in both feet.  Unlike my biopsy, I was going to be awake for this process, lying down on my back, for what seemed like hours.  The toe areas on both of my feet would be numbed, and one incision made in my left foot, and unable to locate a vessel in my left foot, a second incision was made just to the right of the other incision.  The numbness had begun to wear off just as they were beginning to suture up my feet.  As I complained about the pain of that process, I had been advised that I would be sewn up very quickly and it would actually be more painful to inject more numbness with several more sticks.  I shut up, and let them finish.  I was placed in a wheel chair, and rolled off to x-ray.

I went home following the procedure, told to relax and stay off my feet.  One thing about someone who never gets sick, they do not know how to act.  And so, as I had stitches in my feet, the wounds closed up, and I was feeling fine, I decided to join the rest of my co-workers in our weekly city-league basketball game.  This was one of those times, when all the “knives should have been removed from the drawer, not just the least sharpest.”  I lived alone, and my fiance was nowhere to warn me not to play, but one thing I did not consider, after the game was over, “what would have happened if either of my feet would have been stepped on”, let alone the stress on the incision on my feet.  But you know what?  For at least that hour or two, I was not thinking about cancer anymore.  I needed to feel normal.  And as I would soon come to realize, it would be the last time, I felt in control.

This is a photo of my feet, 30 years later.  Pay no attention to the tan lines as I live in south Florida and wear only flip flops 95% of the time.  But you can see, the scar on my left foot, and both scars on my right foot remain.

The news was good from the results, and just as they were with the blood work, CT scan, the lymphangiogram also showed no signs of Hodgkin’s.  This was awesome!

Clearly, my oncologist had enough experience, and knew the steps that he wanted to take.  He informed me that the next process in the staging, and unfortunately has not changed in 30 years, was a bone marrow biopsy.

I had heard this term once before.  My stepfather needed to have one done, and it had been done through his breast bone.  He would describe as taking an extreme punch to the chest.  Okay.  No problem, I had been in my share of scraps as a teenager, I could handle this.

Now, the thing about me, and in spite of everything I have gone through not just in my cancer years, but also my survivorship, I am extremely squeamish.  I do not even look at the dentist tray of tools.  So the last thing I wanted to see, were the tools I could assume would be strong enough to get through bone.  Of course, another procedure I would have to be awake for, I was relieved when I found out, the biopsy would be done through my hips, both sides.  I would not have to witness anything, just a couple of sharp sticks in my ass.

It was not my normal oncologist doing the procedure, but one of his partners.  I laid down on the bed.  I was asked if I wanted another pillow, and I naively asked why?  I was warned this would be uncomfortable, and very quickly I realized that the pillow was for me to scream into.  I am going to say this a lot with these posts, “I had never experienced pain like this in my life.”  When the doctor was getting the sample, it felt as though my ankle was being pulled up through my leg.

If you have ever heard the term “growing pains,” those pains occur in your bones.  Well, they were removing samples from inside my hips.  Of course there would be pains.

With the first sample taken from my left hip, and done, the doctor decided to start making small talk with me, I assume to try and distract me.  Oddly, he began to talk about pro-wrestling, which fortunately, I knew quite a bit about.  It did not change the amount of pain, nor how loudly I screamed into the pillow.  However, one word got my attention.

“Oops.”

Now of course, since I cannot see what is happening, I could only assume, he made a mess with the sample, or perhaps I was bleeding too much.  But then the doctor said this, “I lost the sample.  I need to go back in and get another.”  I have no idea if he said anything more to me because at that point, I was so angry.  I do not even remember the pain or even screaming.

The results would come in and would just like the others, negative for any sign of Hodgkin’s.  Just the one lymph node.  This should have been a piece of cake.  Perhaps even no treatment.

And then my oncologist said this, “there is one thing more that I want to do, and this pretty much will determine what stage you are.”  I began to feel so much frustration.  Time was important.  He even said so.  Yet now several weeks had gone by since my diagnosis, and seemingly wasted on tests that were not going to determine shit.  Why was this not set up and done sooner?

To make matters worse, this next procedure would not get done until after the holidays.  So much for timeliness.  But I would find out why it took so long to schedule.

You Did Not Just Say That


Before I being, I want to take a moment and give a HUGE SHOUT OUT to fellow Hodgkin’s Lymphoma survivor, Barry.  Yesterday he announced his 55th birthday, and even more momentous, this year, marks his 50th year as a Hodgkin’s survivor.  Yes, as you can see, cancer does not discriminate when it comes to age.  Though I know many long term survivors with longevity similar to mine, I can probably count on one hand how many I know that I have hit this milestone.  And as is often the case, wondering how much time we still have left, seeing someone with twenty more years than me, gives me a higher bar to reach for in my survivorship.  Barry, for that, I thank you.

I have been recalling the 30th anniversary of my diagnosis.  Something I am not certain that Barry would remember 50 years ago, other than what his parents may have told him.  In my last post, I had finally accepted the diagnosis of Hodgkin’s Lymphoma, and now had to move forward with getting better.  Cancer to me at that point was only a death sentence.  I did not want to die.

After speaking to my grandmother about who her oncologist was, I made my appointment to see him.  And yes, as you can tell, I often use celebrity look alikes to give you the impression of who I was looking at.  Dr. Morrison reminded me of the actor Martin Landau.  And yes, he looked this old.  I had no idea why he was still practicing.  But, my grandmother was still alive because of him, so I needed him to not retire just a bit longer.

When he came into the exam room, I noticed much of the familiar conversation he was directing at me.  The only difference was, this time I was paying attention.  I was no longer in denial.

Dr. M stated that I did in fact have Hodgkin’s Lymphoma.  At first, he talked about treatment options such as chemotherapy, radiation therapy, or even a combination of the two.  In any case, back in 1988, he stated this to me:

“Hodgkin’s has a high cure rate, over 86% when caught early enough and I believe we have done just that.  But timing is important.  We need to get you “staged” (a term for just how bad the disease is) and then determine the treatment from there.”

Ok, I got all that.  High cure rate.  Need to deal with now, not later.  I had wasted enough time.  Get treatment.  Got it.

But then he said this to me:

“If you are going to get a cancer, this is the one you want to get.”

Even if you have not had to deal with a cancer before, I am sure you would agree, that to say if you were “going to get a cancer, this is the one you want to get,” is an awful thing to say.  That is like saying to someone who got stabbed with a butter knife, “at least it was not by a sword.”  The wound is a wound and just as deadly.  And so is cancer.

One thing I know is certain, I know of no one who has been diagnosed with Hodgkin’s Lymphoma, who has not been told this line, and not reacted in a similar fashion.  So now I have gone from hope because he saved my grandmother’s life, to “you pissed me off pal!” and now I am probably not hearing everything you are telling me that I need to know.

More bloodwork had been done, and just like the other, nothing was showing up that I even had a cold, let alone cancer.  All that confirmed that I had Hodgkin’s was a lymph node that had been biopsied, and confirmed.  Without getting too technical, a certain type of cell, called a Reed-Steinburg cell must be confirmed.  This cell is a large cancerous cell with more than one nucleus.  Without this biopsy, and in my case, not having any pain in the swollen lymph node, my original doctor really had no chance of diagnosing it as anything more than a cold.  Even if he had done bloodwork, it did not show Hodgkin’s.  Doctors do what they specialize in, and honestly, family practitioners back in the 1980’s and before, were not prepared how to look for this.  Big cancers like breast and skin, sure, but Hodgkin’s?  Not when less than 10,000 cases a year get diagnosed.  That is what makes Hodgkin’s so hard to diagnose.  Without that biopsy confirmation, it could be a cold, some other infection, even non-Hodgkin’s.

But now that Hodgkin’s was diagnosed in me, the next thing that had to be determined was how bad was it.  And if you are newly diagnosed, or were diagnosed five years ago, or even twenty years ago, in my next post, you will get to see the progress made in diagnose Hodgkin’s Lymphoma.  Fortunately for you, easier methods were found than the tortuous and painful methods of staging compared to simple scans being done today.

I have to wonder though, as my fellow survivor Barry was diagnosed twenty years further from me, would he say the same thing to me.

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