Paul's Heart

Life As A Dad, And A Survivor

Hands Up. I Can’t.

If you have ever flown, you are familiar with going through full body scanners. There are plenty of jokes made about what can be seen as you go through the scanner, but nothing that lets you see “intimate” body images. That being said, a “shape” does appear on the “human shape” ( a picture of a body, not my own), on the screen in the area of the middle of my chest. That shape is my artificial heart valve, which does contain metal. I also have a stent with my heart, and also my carotid artery. And I have plenty of metal clips in my chest cavity. Long story short, I am going to get extra attention when I exit the scanner. I have a card in my wallet that makes reference to the “hardware” inside my body, necessary to keep me alive, but I will still usually require a passing of the metal detector wand, and hand swab. Whatever, I am not worried.

The problem I do have with the process, is that I cannot raise my hands above my head and shoulders, as high as TSA would like me to. I can extend my arms outward which would give them a similar view as far as I am concerned. But going higher, is not possible. Related to my treatments for Hodgkin’s Lymphoma back in 1988, I received a large amount of radiation therapy. The damage that has developed progressively over the decades is diagnosed as “radiation fibrosis syndrome.”

Dr. Michael Stubblefield is a pioneer in the study of this condition, and one of my former physicians who I actually saw for this condition. The key word to focus on, is “sclerosis”. Typically you would hear this in reference to the cardiac system, as in a hardening of the arteries or valves. Well, if you apply that the the muscles in your body, it is the same thing, a hardening of the muscle fibers. This issue will also result in muscle loss and atrophy, something you are not likely to notice necessarily when it comes to the upper body, unless someone has their shirt off. Then you can clearly notice the damage without even having a medical degree.

In another one of Dr. Stubblefield’s slides, and to be clear, none of these images are me, I can tell you, that without my shirt on, my physique is very much like the image on the right. In the other two images, you can also see a “chicken wing” like appearance with the shoulders that I also have, preventing me from having two well rounded shoulders, just flat shoulder blades. With my shirt on, look at me from behind, you might be able to notice one of my shoulders actually does hang lower than the other shoulder. There is also a condition many of us have to deal with, and I currently have mine under fair control, is something referred to as “drooping head syndrome,” appropriately named because it looks exactly like it is called. This is caused by muscle loss in the neck, as the image in the right photo demonstrates. Many of us have heard fellow survivors referred to as “pencil necks” depending on the severity of muscle loss in the neck.

Getting back to airport security, this radiation fibrosis, hardening of my shoulder muscles that are left, prevent me from raising my arms above my shoulders. More times than not, after I get out one of the quickest medical explanations, “I can’t, I have radiation damage from cancer treatments,” most will let me go through as is. Every now and then, there will be someone in TSA who will have an attitude, and make me go through the old metal detector instead. I do not let it bother me, because while some very cool images will show up on my picture, someone else going through might have something nefarious hidden on their person that needs to be caught.

Forcing my arms, as in someone lifting them for me, would tear my shoulders apart. In fact, my doctor was so concerned with injury to my shoulders, that he even advised me against participating in karate with my daughters, even if slow and low impact, modified for my protection, for fear of injuring either or both of my shoulders. As you can tell, I felt I needed to prove my doctor wrong, although admittedly, I did stop following my first belt promotion, a matter of just being able to say that “I did it.”

At work, some of my job descriptions involved reaching above my shoulders, and repetitive motions with my arms. As my condition got worse, it required my doctors to issue health restrictions, which under the Americans With Disabilities Act, required my employer to not only accept those restrictions, but retain my employment, finding other work to complete within those restrictions. Seriously, the ADA exists for peoples’ protection. Learn the law.

Over the decades, I have slowly lost my ability to make my upper body work for me. I cannot do pushups or pullups. I cannot reach for some things in my cabinets without a step stool. Nearly every sport I used to enjoy, volleyball, softball, bowling, are done, my arms unable to perform the functions necessary to participate. The last thing I remember being able to do, and this was more than fifteen years ago, was hoisting my daughters above my head, to carry them on my shoulders.

If there is anything, anything that I truly miss having lost this mobility, it has been to be able to hold my daughters this way ever again (yes, I know they are both much older now, but someday I hope to be a grandfather, and this old perch will never be sat upon like that again.).

Looks can be deceiving. You know what I mean. This shell that we have, hides what is being dealt with inside. Do you know the story of anyone using a handicap spot in a parking lot? What happens when the person looks totally normal, or climbs out of a vehicle that no one with any kind of handicap should be able to do? There are a lot of internal things that you cannot see, functional things as simple as someone struggling for air, due to heart disease or reduced lung capacity. Perhaps as is often the case, some do not want to burden others with a load of pity or empathy for those of us that have limits. People are much happier, and comfortable, when they do not have to think of some of the difficult things that we deal with. That does not change the fact that we still do have to deal with those things.

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2 thoughts on “Hands Up. I Can’t.

  1. mbetchkal1965 on said:

    I am going through so many similar things. I am almost at 37 years since finishing my radiation treatments. Each year things get worse. I hate that it seems like I always have an excuse as to why I can’t do certain things. Shoulder surgery twice on the left shoulder for torn rotator cuff. This year it was the right shoulder and it’s taking so much longer to heal.

    I cry reading your posts knowing that I am not alone. I wish people could understand.

    Also during my surgery to remove the football sized tumor from my heart and left lung my lung collapsed and it doesn’t function. Breathing can become difficult at times. Thyroid replacement as well, we have numerous similarities.

    Thank you for sharing your story.


    Sent from my iPhone


    • Marjory, thank you for sharing. Your situation with your shoulders is exactly what my doctors had warned me about.
      It is my hope that you are able to see doctors that have experience in radiation damage (ReVital has many locations around the country and would be an excellent resource, as well as any major cancer network with a long term cancer survivor clinic).
      Like you, I wish people could understand. If anything, please find solace that there are others like us, who do understand. We are not alone.

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