Paul's Heart

Cancer – Do You Feel Lucky? Well, Do Ya?

I am going to ask you three questions. Do not look ahead to the next question before answering each one. To help, I am going to skip a few lines in between each question.

If you had to choose between an apple and an orange, which would it be?

If money and time were no object, where is one place you would like to travel?

If you had to choose a cancer to be stricken with, what would it be?

Cue the sound of a needle scratching a record to a complete halt. Cancer? What?

Ok, first, my answer is an apple. I love putting peanut butter on apples. And my dream place to visit, Alaska. Those two questions were easy to answer. But that third question, what the Hell? Of course, we never think about opting for a certain type of cancer. We hope beyond all hopes never to even hear the word cancer, though it is happening more and more each day.

But the truth is, that third question really happens, well, not in the form of a question, rather, for most Hodgkin’s Lymphoma patients and survivors, we have heard this comment, “if you are going to get a cancer, Hodgkin’s is the one to get.” So, that is why I asked you in the form of a question. Imagine being told by a doctor, you are lucky to have gotten a particular cancer.

To be clear, no, lucky is the last thing I felt when I heard him say that to me. I was literally like “what the fuck is wrong with you!!! I don’t want any cancer!” If you refer to the image, you will see that Hodgkin’s ranks 6th of the top 26 cancers in terms of 5-year survival rates. Up until recently, I had never researched if Hodgkin’s was the best cancer to have. All I was aware of was the high remission rate, and I thought it meant I had a good chance at long term survival. Turns out that part was true, as I write this, I have had 37 years as a Hodgkin’s survivor.

While many of my fellow long term survivors echo my sentiment, others were not as strong, some even agreeing with their doctor. Here are some of the comments that have been shared:

“Having all these late side effects, I am not too sure about that.”

“I was told I had a good cancer (Hodgkin’s).”

“No cancer is good.”

“I am encouraged by the statistics. When I was young, breast cancer was considered mostly fatal.”

“What about all the late side effects caused by the treatments?”

“Hodgkin’s is the least of my worries at this point. All the side effects (cardiac) have flipped my world upside down.”

“No one wants cancer!”

“What really sucks… 3 of the 5 cancers above Hodgkin’s are linked to the the treatment for Hodgkin’s.” (and on a side note – along with the 3 referred to, I am also at risk of 4 other cancers in the top 26 from my treatments, along with my other issues)

“I felt lucky. I felt lucky that they knew what was wrong with me and they knew how to treat it.”

“I wanted to throw a punch!”

“I always put more emphasis on the “if” in the phrase.”

“No one from the top six says they are lucky.”

“I actually found the comment positive and hopeful.”

“No cancer is lucky and just look at the late side effects so many of us have to deal with from our treatments. It’s very scary living under the Sword Of Damacles.”

“It strengthened my inner belief that I would beat Hodgkin’s.”

While there were some who did not react as negatively as the majority of us took it, there is a range of reactions. I know personally, I wish the doctors would just stop saying it. And here is why. If you look at the graphic again, do you see any of those cancers stating 100% survivorship after five years? No. And the truth is, of the top six alone, there are too many that do not even hit remission, relapse, and worse, don’t survive.

Do not misunderstand me, after 37 years as a survivor, and in spite of all of my health issues from late side effects caused by my treatments for Hodgkin’s, I am still here experiencing my daughters lives as they continue to grow and experience life, I know that I am blessed. And I would not be here today, if it were not for the countless other survivors who have come into my life, young and old, newbies or long termers.

But that does not change, that the hardest thing to hear is “you have cancer,” and then follow that up with “you’re lucky.” Being told you have cancer does not feel lucky. It makes you angry. It makes you upset. And every word spoken after that, if it is not put in the right terms, can be hurtful.

I am glad that so many more cancers have higher favorable outcomes these days. That is one thing I have lived long enough to see. But I am also disappointed, that we have not gotten over the hump to find a 100% cure at this point.

This was a pin that I have from over fifty years ago, for a fundraiser for the American Cancer Society, to raise money for cancer research. Yes, I am disappointed that we still do not have that cure. And there really is no reason for that.

Cancer – How Important Is An Apostrophe?

September is National Hodgkin’s Lymphoma Awareness Month. It is also the month that Non-Hodgkin’s, Leukemia, all blood cancers, and childhood cancer are recognized.

Hodgkin’s Lymphoma is considered a “blood cancer.” It is also considered a childhood cancer, though it can happen at any age, but prevalently among teenagers and adolescents, most common among 15-19 year olds. I was twenty-two when I was diagnosed, and I am considered in that childhood range.

Then there is this oddity of information. Back in 1988, I was diagnosed with Hodgkin’s Disease. Discovered by Thomas Hodgkin in 1832 when he reported enlargement of lymph nodes and spleens, he did not name the disease after himself. It was another physician by the name of Samuel Wilks, who in 1865 recognized Hodgkin’s earlier work, officially giving the name “Hodgkin’s Disease.”

It was in the later 1990’s that researchers established that the malignant Reed-Sternberg cells were usually developed from B lymphocytes. In other words, Hodgkin’s was no longer some sort of mysterious disease of the lymph nodes separate from other lymphomas. Hodgkin’s was actually a distinct type of lymphoma. And in 1997, at a WHO advisory meeting, debate occurred and Hodgkin’s Disease was changed to Hodgkin’s Lymphoma officially in 2001. It is only recently that I have referred to my Hodgkin’s as lymphoma.

And now, twenty-five years later, a new issue has come up with the name. It is small in stature, but it appears to matter to some, the apostrophe in the name “Hodgkin’s Lymphoma.” A fellow Hodgkin’s survivor (I am still using the apostrophe) pointed out, that it did not appear to be grammatically correct, as there was no “S” at the end of Hodgkin’s name, oops, just no getting away from that apostrophe. But historically “Hodgkin’s disease” literally meant the disease described by Hodgkin, so the possessive apostrophe was natural. But modern medical terminology increasingly avoids possessive eponyms (I wonder how others with other major illnesses like Lou Gehrig’s Disease or Parkinson’s syndrome care about this grammatical issue). Hodgkin did not “own” the lymphoma, but his name is the identifying label. Thus, the preferred modern wording today is “Hodgkin Lymphoma”, no apostrophe, no “s”, which honestly does not even sound right.

So now, I have lived long enough to see three different eras of Hodgkin’s (I am forever going to use the apostrophe, though I have resigned myself to using “lymphoma”). There is the Hodgkin’s Disease era, the Hodgkin’s Lymphoma era, and now the Hodgkin Lymphoma era.

And that is the irony. Thomas Hodgkin himself never called it Hodgkin’s disease. He knew he had a major discovery. He just probably never thought that punctuation would become a major part of that discovery.

And to be clear, I am a 37 year survivor of Hodgkin’s Disease.

Long Term Survivor Follow Up Appointments – Part 1, The Loss Of My Advocates

This post was to have been written two days ago, to piggyback on my last post, “Five Year, Follow Ups, For Life.” This is my second of two weeks through the year, that I have follow ups for all of the late side effects that I deal with as a result from my treatments 37 years ago for Hodgkin’s Lymphoma. I wanted to give a day by day reporting to show what this practice of long term survivorship care looks like. However, I hit a mental snag at one of my appointments on the first day, and it knocked my focus off enough.

John Lennon once said, “life is what happens when you are busy making plans,” and admittedly, I was already having difficulty with my focus before that appointment, as I have a close family member ill, and because I had already had these appointments scheduled more than six months ago, I needed to be in both places at once, and cannot. And like I have mentioned before about the airplane analogy, “if the cabin loses pressure, an oxygen mask will drop from the ceiling, and put your mask on first before helping anyone else.” This is one of those situations, if I don’t take care of myself, I am no good to my family member.

I see a number of specialists during these weeks, all coordinated well in advance to see as many as I can fit in, and to get as many of any studies they need to get done. When I first started this strategy, it was a couple years after I realized that I was no longer just a cancer survivor. I was a cancer survivor with late side effects. And between the doctor I found who understood this need, and my primary care doctor of nearly forty years, this process went flawlessly, seeing who I needed to, having testing that I needed, and any surgeries or corrections that had to be done, completed.

And then, as is their well-earned right (I would never begrudge them), they retired. But I felt confident that I had learned enough to be able to navigate with all the new medical specialist and doctors I would bring on to my team. I had learned so much what needed to be done to help my survival.

Turned out, I was wrong. Without those two advocates of mine, I am lost. I now find myself making brash decisions, not necessarily in my best interests, but worse, struggling with the foundation of my care, trust. I won’t get into the full issue because it is not what this post is about, and therefore will have its own post, but whereas I usually have my issues with health care, normally steered at insurance and corporations, I felt that morning, an absence of the backbone of medical care, medicine itself. So, yeah, I will get into that on another post.

So, my week has gone as it was on paper with my appointments. The very first thing that happens with me, I have bloodwork done, with a multitude of tests. I am a difficult stick as my veins were destroyed by my chemo, as ports were not available back when I did my chemo. Normally, this is the most stressful thing for me, yet this particular lab has the best, and most pain free success with me.

From there, it was off to have a chest CT scan done, to follow up lung nodules I have, one suspected of being cancer. There is always concern about me being exposed to more radiation on top of the lethal amount I had for my Hodgkin’s treatment, but as this is following a situation that needs to be followed, and possibly dealt with, the risk is worth it.

From there, it is my first discipline I see, pulmonology. With the scan done, it is reviewed immediately, compared with prior scans for growth or development, and the decision is made what to do next, or if we are on to the next level of care, a biopsy. But for now, this scan has revealed little growth, or enough to warrant doing a biopsy at this time, which carries risks I do not need right now. See you next time.

My next appointment was with what I consider the most important of my survivorship care, as it always gets the most attention, cardiology, my heart. Of course today, I arrived with a new symptom, the same symptom that took me to the ER two weeks ago, a swollen right arm and hand.

When I arrived, the swelling was just as bad if not more than two weeks earlier. Now, to be transparent, though I disagree with why, today’s appointment was only to be with a nurse, not my doctor, per rules from corporate or insurance, I don’t know. But today, and I want to be clear, I respect all of my nurses, but I needed to see my doctor today. This was an emergency.

Regardless of my concern, I gave the nurse the benefit, that surely he would bring my doctor in to look at my hand and arm. Instead, he told me of the CT scan that had been ordered (I knew this already), reviewed my prescriptions, did some vitals, and that was it. I said to him, “is there any chance the doctor can just come in and at least just take a peak at my arm and hand in person” so she can see what I am dealing with?” The answer was “no.”

And then my stomach sank. This had never happened to me before. My other doctors would never let this happen. I have been at this survivorship stuff for sixteen years now, but yes, that was with my advocates quarterbacking everything. And I thought I knew enough, and had the confidence that I could continue my care the only way I had known. I was wrong. I was crushed. I left the office feeling my survivorship care was now ending, no longer allowed to see my doctor, especially when I needed them most. I was definitely shaken.

I felt I had only one hope, which would be the next morning. Since I could not get cardiology to be concerned, I was seeing vascular, responsible for my carotid arteries, impacted also by the radiation therapy. I had a stent placed seven years ago.

As soon as that ultrasound was done, I was seen in the exam room. First, the scan showed the carotids were still doing well. And then the attention turned to my hand and arm. He knew I still had a CT to be done that was ordered by him that would show anything vascular as a potential cause. But he offered me another possibility, and something quite common among Hodgkin’s survivors and breast cancer survivors, lymphedema or lymphadenopathy, swollen lymph nodes, something I definitely did not want to hear any more than a blocked vein or artery or a blood clot. If it turned out to be lymph related, he would arrange for me to add yet another specialist in my long term care.

I was originally scheduled to have two CT scans, which would have meant being exposed to double the radiation. A last minute decision, and availability of a special machine, allowed the scans to be combined. That news brough other good news, in that contrast would be used, it meant only trying to get an IV into me only one time. The scan was completed in about ten minutes. And then the results were available later, and were shared by my doctor.

The good news, the CT showed nothing vascular or blood clots. But it does show some lymph concerns as he thought a possibility. In particular, there are two swollen lymph nodes. You would think someone who was 37 years out, the last thing I would think about is my Hodgkin’s being back, but this would not be considered a relapse if it was, this would be considered a new diagnosis.

I am trying not to get too far ahead. I have an appointment later this afternoon, as well as two other appointments to in fact discuss this direction. But I cannot overlook the fact, that the symptom with my arm and hand, is identical to when I was diagnosed with Hodgkin’s back in 1988, with the left arm and hand.

I am in a critical spot of thought right now, and I want to make the right decisions. Which clearly means I need to have my quarterback to make sure I don’t make any foolish decisions. All the while I am dealing with my ailing family member at the same time.

This was my harder post to do, so, I am hoping to wrap up this week of follow ups with just a second post. And then it is on to figuring what is up with my arm.