Paul's Heart

Life As A Dad, And A Survivor

My Hodgkin’s Disease – The Beginning

Four words in the form of a question I always get asked,  “How did you know?”

Up until my 22nd birthday, I had really only ever had one experience with cancer personally, and that was my Grandmother.  She had beaten breast cancer and was doing well.  The only other mention of cancer, was hearing that someone had died from it.

I was engaged (to my eventual ex-wife) with a little more than six months to go until the wedding.  There was not any feeling that something was wrong.  It was rare that my doctors would ever see me other than for an annual shot to help me deal with seasonal allergies.

It was just by chance that I had reached my hand up to the back of my neck to scratch a spot that was not really all that itchy, just enough to get noticed.  There it was, just two inches below my left ear, a huge lump about the size of an inch in diameter.  For the life of me, I swear it just popped up.  I never noticed it before.  But it was not normal.  So, I went to the doctor.  He felt due to its location, it was not a concern, probably a swollen node from perhaps the common cold.  Given the title of this post, I am sure you must be thinking “what kind of !@#$^@&#!!!! doctor was seeing”?  Just hold on for a brief moment longer.

The doctor put me on Naprosin, which is an anti-inflammatory, which actually did the trick and reduced the node in my neck.  But alone with the prescription, he did not want me playing any basketball or volleyball, really nothing athletic to give my body enough rest.  Odd orders for something compared to the common cold.  But once that was done, I went full tilt trying to get my body back into the swing of activities, exercise, weights, and of course, the games.

Almost immediately, I developed a very wierd painful tightness under my left arm when I extended it.  I cannot explain it, but I was upset with my doctor over all this, that it must have been his fault that ordering me rest for those couple of weeks made me susceptable to an injury.  So a co-worker had recommended that I go see his doctor who was pretty good at dealing with injuries.

I was only there briefly when he recommended seeing an oncologist.  I had no idea what that was, but agreed to go see it.  Upon entering the office, I still had not idea what discipline of medicine it was, but with all the fancy equipment, there is no way this was any simple office visit.  The doctor, who resembled Jeffrey Goldblum as The Fly, had barely walked into the office I was put in, not an exam room, not even shaking my hand, and begun to tell me about Hodgkin’s Disease.

HOLD ON A F*CKIN MINUTE!!!  Hodgkin’s Disease?!?  I had heard of it, not sure how, but no, no way.  I had a sports injury.  He obviously has me mixed up with someone else.  I was ready to bolt out of the office, but somehow he convinced me to at least an examination, which I conceded to.  Of course, then for whatever reason, he explained he need to… well… take his finger and go where no one has ever gone before.  When I protested and questioned the reason, he said to check for blood in the stool.  To which I warned him that the only blood he would see, would be his own if he attempted it.  So he does the digital, and now I cannot figure out which has me pissed off more, going in my out door or trying to tell me I had something bad, real bad.  He insisted on investigating the lump in my neck, which had resumed growing.  I said that I was there for my sports injury, not my neck.  He wanted to do a biopsy.  I wanted to do a quick exit.

So, six second opinions later, the final by a sports facility who ruled out the sports injury definitely, and then recommended that I get the biopsy done.

Within the next two weeks, the biopsy was done, and the preliminary diagnsosis was made.  Hodgkin’s Disease, Nodular Sclerosing, stage of disease to be determined following further tests.

And how on earth did a doctor mistake cancer as a common cold?  Hodgkin’s is a very difficult cancer to diagnose, as far as recognizing it.  There was nothing in my bloodwork to offer any clue, and x-rays and CT scans were negative.  But it was noted in journals, that Hodgkin’s was often misdiagnosed as a common cold by general practitioners.

5 thoughts on “My Hodgkin’s Disease – The Beginning

  1. greg on said:

    I got a hodgkins diagnosis around 1988/89. I am not as well versed as you on all my treatments etc. but I had back pain for quite a while before I was found to have a tumour. I had surgery to remove it and it was found to be benign… Oops…it wasn’t benign after all but it took them several months to discover this. I’d developed swollen glands in my groin and neck area!! I had chemo and radiation til the cancer was gone but it quickly came back. They booked me in to the hospital for a Bone Marrow transplant which meant that they harvested my marrow and then chemoed me to the edge of death. I don’t know the details but I think the theory was that they kill off the cancer but they also damn near kill you and then they reinsert the bone marrow that they saved from this process to help you heal. 2 months in hospital but It worked! Well that and the 2nd set of radiation treatments. Anyway I lived an active life for 20 years after…I was always slightly short of breath on exertion but I figured it was from damaged lungs and carried on…no more hockey and I only skiied a few times after cancer and quit. I walked all kinds of golf courses for 20 years carrying my bag when I was younger and I also worked manual labour (garbageman) for 20 years. This came to an end 2010 when I started fainting…I now have a pacemaker. I found lighter work driving a roll off truck for 2 years and did well. Now I’m struggling again. Shortness of Breath. I’ve finally found a good follow- up oncologist who diagnosed moderate cardiomyopathy. Things suddenly took a turn for the worse. At present I walk up a flight of stairs in my house to go to bed and have to immediately sit down for 30 seconds or so before I can do anything else. Cardiac clinic thinks it may be a leaky valve combined with damaged lungs. I’m getting an echocardiograph Wednesday followed by a cardiologist appt. next week. I should have wrote this on the Listserv site where I found you but I was reading your blogs and saw some similarity. I’m just blowing off steam really. More a less typing for myself.

    Good luck with your life and your issues!

    • Greg,

      It is a good thing to vent. I am not a cardiologist, but will tell you from others, the echocardiogram is a good test. You did not mention if you had radiation, which would play a factor in options. If it is a leaky valve, it could just be meds to treat it. A tip for you, if you have any way of obtaining your treatment records to take with to your cardiology appointment, that would aide them in treating you. I had actual chest pain which is what led to my heart surgery. I do occasionally get short of breath, but have really learned to avoid pushing myself to anything that might bring it on. If you’re on ACOR, then you know the many other resources available to you. Please take care and good luck with your upcoming test. Hopefully things will turn out well for you.

  2. yes I had sets of radiation treatments after my first set of chemo and after my BMTransplant. The Dr. who diagnosed the Cardiomyopathy is a Radiation Oncologist and she has all my records…Thanks for hearing me out and I have been reading ACOR.

    You’re a good writer…interesting blog so far

    • Greg,
      Then I would feel ever closer to what I said, that hopefully this is something that can be treated with meds, like they would do for anyone else, who had not been through an experience like yours.
      You’re in my thoughts, please let me know how you make out.


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