Myeloma On The High Plains: Pa ti l Inf ma ion
The late great comedian George Carlin used to have a routine where he played a sportscaster doing the nightly sports report after having had one too many [you can fill in the blank]. About halfway through this routine, the loopy sportscaster would announce, “And here is a partial score from Yankee Stadium: New York 3.”
Huh? I chuckle when I think about that line because I believe that it so describes living with multiple myeloma.
Partial everything is how we live. Partial information is the norm. Don’t get me wrong, I am not complaining. I am just pointing out the basic fact that partial information is all that is available. And that takes some getting used to. My engineering undergraduate degree pencils me in as someone who likes complete, exact, and repeatable answers. The adaptation to partial answers, partial information, and partial outcomes has come with some challenges.
A sample of some basic questions that receive partial answers / information starts with: How bad is it? What should I expect during treatment? How long will I have this port in my chest? When will I start feeling better? When will my hair fall out? When will my hair grow back? Why does everything smell so bad? How long do I have to take all of these pills? What kind of side effects can I expect?
All of these are basic questions that usually are answered with some form of qualifying statement by the expert, letting us know that it is just a best estimate.
Most, if not all, of the of time, there is no one set answer or response that can accurately satisfy the desire for a more definitive picture. For instance, we may get a response to a question based upon how our doctor perceives we respond to information, or maybe based upon the current status of our cancer. Or, maybe yet, we get a response based upon the most recent clinical trial. Whatever the reason, we get a lot of “New York 3” type responses.
But partial information can still be appreciated. It is better than no information. It provides us with a notion that someone knows something about what is going on. And partial information leaves room for interpretation. Or maybe I can write: "It leaves room for hope."
“I hope that the information I just read does not apply to me because it is not to my liking,” or maybe “I hope that it does apply to me because it is good news.”
Information that makes me worry or is not to my liking goes down easier by understanding that what I just read or heard is not exactly my situation. It did not contain all of my information, so it may not apply. All they have is partial information. I must remember that published data and results do not include my particular circumstance.
When listening over the telephone to the nurse reading the side effects of Revlimid (lenalidomide) as an order is being filled and sent out can get scary because anything and everything that can go wrong is mentioned. However, and this is a big however, it is all based upon partial information. They do not have my “specifics.” They do not know exactly what my response to the medication will be. It could be this way, or it could be that way, or it could be both. We sort of know what is going to happen, but not really. It is all based upon partial information.
Steroids? Who among us can say for sure how any of us will respond? My oncologist told me that the wife of a patient called him one evening very concerned that her husband (who had multiple myeloma) was jumping up and down on the bed naked. She did not know what to do. He calmly asked her if he had taken his steroids during the day. She indicated that he had. Well, he told her, “Make sure the drapes are closed, no glass is in close proximity to the bed, and enjoy the show.” He was reminding her that no one can predict with total certainty the side effects of steroids.
For me, taking five little steroid pills on Friday morning results in a Saturday morning routine that can and has involved, in varying degrees, me detailing the car, working out, making the evening’s dinner, and taking care of the laundry all before my wife wakes up (which is usually around 7:30 am). So far there has been no jumping on the bed.
Partial information. Partial answers. Partial this and partial that. No one knows. Our choice is in how we respond to all of the “partial.”
George Carlin may have been more than a comedic genius with his “New York 3” routine. He may have been helping to prepare us for a multiple myeloma lifestyle. But then again, who knows? We only have partial information.
Mark Pajak is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. His column is published once a month.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
This was a great article for me. Before retiring, my career was in medical research, and I completely understand the search for complete information. As I help my husband cope with and understand multiple myeloma and the treatment, I become an information hound. I find the partial information very frustrating. You hit the nail on the head!
Thank you Mark! Your column was entertaining as well as enlightening. It provided a perspective that we had not considered. Partial information can be a two-edged sword. On one hand, some information seems better than no information, but then sometimes it can cause undue anxiety. As you mentioned, no one can tell us how long “remission” will last, how susceptible we are to infections, or what the reaction to a new drug will be. We have to continue to live our lives with partial information and hope that we are realistically weighing the pros and cons of each decision. Again, we appreciate your insight.
Oh my gosh, I had to read your article to my husband. We had such a good laugh over the guy jumping on the bed!!!
Thanks for the interesting column, Mark! The unknowns in life seem to loom large sometimes when thinking about myeloma. I think that my worries right now centre around having a low immunity level, and trying to avoid getting infections. I have had some strange moments when on dex. Once I almost let a dog eat one of my gloves. The owner was quite upset with me since her dog is always trying to eat items and she gets his stomach pumped! Later I explained about the situation and now we talk a lot about her dog, but I am careful not to let it grab my gloves. Another time, I was walking with a pointed stick, like a ski pole, to get over icy sidewalks. I told a couple I was using it to protect myself against coyotes! We got into a heated discussion about coyotes, which do annoy me since they run in a pack in the woods nearby. These folks were very sympathetic to coyotes. I had to apologize to them too afterwards!
My wife and I have laughed for days over the guy jumping on the bed. So funny, especially for those who have taken huge doses of steroids. Thank you for sharing.
Mark, your column cracked me up! I had forgotten George Carlin’s routine, so it brought fun memories! He was, indeed, a crazy man! I enjoy reading your column as I think we are pretty much on the same drugs.
I’ve been in remission for almost four years since my transplant and have taken Revlimid on my maintenance plan. Recently, my oncologist put me on the lowest dose, which frightens me. If my multiple myeloma finds away around the drug at this lower dose, he will have to change it to a different drug, which will bring new side affects and a new set of worries. My choice was either this or to go off completely, which, even though that is my fervent wish, terrifies me. I guess it is the thought of the cancer coming back, which I know it will one day, and not being able to get back to total remission once again. The partial information of “that would be our goal,” when I asked about getting back to total remission, is exactly what you are talking about in this column.
It’s comforting to know that we are not alone as we deal with our new normal. Thanks for that!
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