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.