I woke up this morning more stiff than usual. Chances are, most of you reading this, when you wake up, are able to just reach out your arms as far as they go, and let out a good and sustained morning grunt as you loosen up for the day. I am not able to do that. I miss being able to do that.
I often get told to “cheer up”, assuming that I am not having a good day.
There is a reason that I have these issues to deal with. Nearly thirty years ago, I received 4000 grays of ionized radiation to my upper body to treat my Hodgkin’s Lymphoma. You do not need to work in the nuclear radiation field to know this is not a good number. But it worked in treating Hodgkin’s at the time.
If you grew up during the time of 3 Mile Island or Chernobyl, one thing that was always feared was the long term effects of being exposed to the radiation being released from those crisis. Well, consider my body, similar to someone having been exposed to those two events.
It is not all that bad, barely, because I actually have someone that understands how to deal with the side effects, late developing side effects from that radiation exposure. They know the how, the why, and how to manage it.
Radiation Fibrosis Syndrome. I am blessed to have had one of the pioneers in studying this issue as my doctor. Combined with my other doctor who has studied late effects for treatments for Hodgkin’s, and my primary care doctor of twenty-nine years, I have the best possible chances of dealing with RFS, managing it. RFS cannot be reversed. It is progressive. In other words, it only gets worse.
The pictures above were from a lecture given about RFS, that patients definitely can understand, because we live it. But for those of you who are not patients, perhaps this might help you to understand what we deal with, is real. And what you see with your own eyes, might not actually be what you think.
This is how we used to learn about our bodies when we were in school. Either use of a mannequin or an encyclopedia with “slides” that overlapped showing the various systems of the body. When it comes to the late issues dealt with by a Hodgkin’s Lymphoma long term survivor, we have become that mannequin or encyclopedia. And as the doctor, teaches his student, whether it is educating the patient, or his interns or nurse practitioners, it can be unnerving. Because the teaching tool is not an inanimate object or book, it is a human being actually going through an issue.
My follow up appointments were always the same. An explanation of what has been happening. And for those who are learning at my expense, they are doing so in real time. My inability to stretch? Or as many may recognize about me, my “slouch” that I have, it cannot be help. The damage from the radiation to my shoulder muscles has resulted in pulling my shoulders forward. If I actually do stretch, or participate in some sort of activity that would force my shoulders in a snapping action, I am likely to tear my rotator cuffs. Without my shirt on, the doctor points to all the areas where muscle loss has progressed, one of my shoulders actually hangs lower than the other, and other noticeable points.
And looking like I am down or depressed? Muscle loss and destruction in the back of my neck, means that the the muscles left in the front of my neck, actually pull my head forward, or downward, as in the picture above. The technical name for this is “drooping head syndrome.” I went through extensive physical therapy to not only make my neck strong enough to keep my head up, but to keep my aware that I need to keep my head up. Otherwise, the option of a special neck brace can do it for me.
I have become that mannequin or encyclopedia. For better or worse, this is my life. I am lucky because I have doctors who are understanding what I go through, and how to manage it. RFS is just one of the dozen of late effects that I deal with, and it just happens to be one of the issues you might have a chance to notice, if I am not being alert.
I miss the days that I could have my daughters pull my arms back to give me a good stretch or walk on my back. The stiffness that I deal with, the acclimations I have had to make to my mobility, often leave me dealing with pain issues, which of course, lead to more problems. Even the simple storage of dishes in a cabinet must be kept at a level that allows me to reach for without my arms raising above my shoulders.
Do not misunderstand me, I am not complaining at all. In fact, I am quite used to this. I have adjusted as the years have gone by. I deal with all of my late effects as they come to the forefront. I have my goals in front of me, watching my daughters grow. But first, I have a major milestone coming up next Tuesday.