Letters From Cancerland: Puzzles
Santa left some small, cheap jigsaw puzzles in our stockings. They are flimsy and garishly colored. Last week, we cleared off a coffee table, cut one box open, and spread out the pieces.
Jigsaw puzzles can be huge time sinks, as much as any electronic entertainment. This particular puzzle is of a carousel horse, its colors tinted towards the Fauvism spectrum. It has 660 pieces, over 600 of which look identical to the casual eye. No wonder an hour can go by while I try to find the next piece of the carousel pole on the far left side.
The latest twists and turns of my medical saga bear a strong resemblance to that jigsaw puzzle.
I have been experiencing shortness of breath (dyspnea, if you want to get technical about it) for over a year now. I am not talking about “Gee, I just climbed Pike’s Peak and am having trouble breathing” concerns. I mean I am experiencing shortness of breath walking upstairs to the second floor, a staircase I have climbed thousands of time in eight years, and walking to or from downtown, trips I have made tens of thousands of times in my life.
My myeloma specialist has tried to track down the cause. Amyloids in my heart? Negative. Pulmonary hypertension (suggested by an x-ray when I got my port placed)? Negative. I passed the walking tests; my echocardiograms are immaculate.
Finally he said, “Just because you have cancer doesn’t mean you can’t get another serious illness.”
Like cardiac disease. Like pulmonary disease. Like something else that will seriously hurt me.
As a result, I have spent portions of the last three months undergoing more tests. There was a full cardiac workup, including stress tests. My heart is fine. There was a series of respiratory function tests. I passed them with flying colors. Then came a high resolution CT scan. Piece of cake.
Yes, we eliminated some concerns, but the puzzle is still taunting us.
While working on the jigsaw puzzle, my husband Warren dropped a piece on the floor. It landed print side down; the backside of the piece is gray. Our carpet is gray and brown. We looked and looked but could not find the piece because it blended in so well.
Four days later, sitting down at a different angle to work on the puzzle, I could clearly see the piece against the carpet and restored it to the table.
In looking at old medical notes for another reason, I came across a PET scan done in June 2015. The focus of the scan was multiple myeloma. But buried in the findings is a reference to a possible pulmonary issue.
Like the puzzle piece that blended into the carpet until I was in a different position, the findings could only be seen from a different angle. I copied the report and passed it on the pulmonologist with whom I am consulting.
It may be a false lead. I don’t know. Or it may be a missing puzzle piece.
In a few weeks, I have a slate of doctor visits. First my oncologist for my four-week check, then the pulmonologist for the shortness of breath problem, and finally my personal physician for the ongoing Coumadin (warfarin) battle, which I wrote about in my last column. (The latest twist in that adventure is we upped the Coumadin dosage and my INR dropped lower, which is totally contrary to how this is supposed to work.)
There are multiple puzzles in my life right now. There are multiple pieces, some upside down, some mixed in with the pieces for another puzzle, some, I am sure, missing entirely.
It makes the carousel puzzle look easy.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
April,
The jig saw puzzle analogy was perfect. I hope that you get answers, not knowing the cause is frustrating. You know, as do your docs, that something is not right but can't start to effectively treat it until you know what is causing the problem.
I hope you get to the bottom of this. Having symptoms and not a diagnosis is very stressful. Best to you and hope it gets resolved.
I know how frustrating this must be. You didn't mention it but I am sure that you and your doctors have considered whether your symptoms are traceable to the medications that you are taking. I hope that you get some answers soon.
Aloha April,
Great article! This whole multiple myeloma thing is such a complicated "puzzle". I read of your struggles, and it makes me wonder how our diseases can be so different and still be the same problem.
You are a leader of our group now, so we all really appreciate your insights into your health challenges. Keep searching for the answer. Like that piece on the floor, the answer is there – you and your docs just have to see it.
We are with you on this as much as we can be! Thank you for sharing.
Much Aloha
Tom
Hi April.
First off, thank you for such a wonderfully written article. Secondly, I'm new here so please forgive me for not being on top of all your past articles, but I too experience shortness of breath, sometimes just from talking, but mine is caused by my anemia. Just a thought, not to diminish the possibility of a more serious problem, but figured I would at least mention it.
Thank you again for sharing your story. I've truly received so much comfort and support from reading all the wonderful articles published here.
Something to consider. My husband is a year out from his multiple myeloma diagnosis, and seven months since a stem cell transplant. He has had asthma since childhood, and it was well controlled until shortly after the stem cell transplant. He experienced symptoms much like you described. His asthma doctor increased (doubled the dose) of my husband's use of an inhaled steroid, QVAR (beclomethasone dipropionate hfa), and another (albuterol) that he uses as needed, and he got pretty immediate relief. Within a month or he was able to reduce the use of the inhaler to the former dose. Of course, this may not be your issue, but something to consider. Good luck.
Make sure your hemoglobin level is above 8. When mine drops below 7.5, I have the same problems as you do (really big problem when it goes below 7). One blood transfusion clears the problem almost immediately. Transfusions are a life saver. The problem is not my heart – it’s the cancer shutting off your red cells. You may have the same problem.
While I am so sorry to hear of this latest hurdle, your columns are a joy to read. You inspire me to pursue those symptoms and not ignore them (how tempting that is!). Praying for recovery and discovery!
Good morning, April, and thanks for the interesting analogy about the jigsaw puzzles. I am really sorry you are having shortness of breath. All of the above comments and suggestions seem like they could be a cause (correlation with a drug taken, asthma, anemia). I hope that your doctors can rule in or out any possible cause, and find a treatment.
It's funny, but at our cancer centre there is a whole cupboard of jigsaw puzzles that have been donated. You often see people working on them, in any waiting room! They put in a few pieces and then leave them for the next person to work on. I talked to a volunteer who is in charge of the puzzle cupboard, and she said that they rotate them around the waiting rooms! If there is a piece or two missing from a puzzle, she asks that the donor makes a note of that too.
I can only imagine what you're going right now. I have been having a similar issue with migraines and something I'm not familiar with. These episodes take a hold of me every night lately and I cannot explain what is causing them. We have done all kinds of tests stars as a migraine but intensifies about 10 times worse and people who have migraines know how bad those are. Right now I am having them and I don't know when they will stop. I was having them about 3 months ago and they just stop. Now they are coming back. You will be in my prayers. God bless you.
Hello April,
Medical detective work sure does require following a lot of false clues. Many of us wish we had been more persistent on our way to diagnosis, and now I guess we become more determined to push toward answers. One friend of mine had several infections in her lungs that were treated partially successfully with antibiotics. Her cough diminished, but her shortness of breath after a life of fitness increased. It turned out that one of her heart valves had been damaged by the lung infection; it was no longer closing enough. The valve damage was so subtle that it could only be seen through several images. Your columns light the way toward coping with dignity and being positive without being delusional. I sincerely hope you get an answer soon. Best wishes from a myeloma mate!
Dear April, Your puzzle analogy was so effective in describing your latest health challenge in Myeloma Land. You sound positive, and yet this has to be so challenging. The frequent tests, the consultation, and the paucity of answers would be awful for any of us. I wish you well in the search. Once you have more answers and a plan, that will be progress. Meanwhile, don't forget to intensify your self-care strategies. Looking forward to your next column.
Dear April,
What a terrific column!
I also have developed dyspnea, and so far no cause has been found. It is frustrating. I hope you get to the bottom of it quickly.
I always enjoy your writings, and have learned a lot from them.
I've had the shortness of breath for two years. Had a heart cath and the arteries were "clean". God news considering my family history. Echo cardiogram normal.
Can't walk up steps, across the yard, or ride my bike without losing my breath. Anxious for your results.
I am a professor of orthopedic surgery who had similar shortness of breath (SOB) symptoms and the same type of extensive – and negative – work up when I had initial diagnosis in 2003. The SOB was also accompanied by mostly sensory (and some motor) neuropathy for which there was no known association with multiple myeloma at that time – although it is now well known that a significant number of myeloma patients have neuropathy of some degree on initial presentation – before treatment with anything (sic). My neuropathy stabilized and the SOB went away after my successful tandem transplant. I am fairly certain that the SOB was associated with the neuropathy, although it is a very difficult to pin down – diaphragmatic involvement? intercostal nerves? etc. My symptoms of SOB and neuropathy have returned recently since I have relapsed into a gentle multiple myeloma "smolder". These will hopefully go away when and if I decide to get more treatment. May it be the same for you. Of course, get a proper work up, as you seem to have done, but if they don't find anything specific, don't make it worse with worry. As a world class neurologists told me: treat the main disease, i.e., the multiple myeloma – not the symptoms. Good luck to us all.
Gordon
As always, lots of good suggestions, many of which have been tried, tested, and discarded as not the answer. I guess those came from other puzzles--yours, mine, theirs--or just stray pieces that we thought "might" fit. After all, in the original telling, Cinderella's stepsisters made the glass slipper fit by cutting off a heel or a toe.
What struck me most about your comments was that strong and comforting sense of being in a support group where we all share, listen, and encourage one another to go on. That for me is the most significant thing about the columns, columnists, and readers of The Myeloma Beacon. Back in November 2013, I wrote a column about how I don't do support groups. But as I wrote, I AM in a support group through this site. I still feel that way. You all are part of that group. And you totally rock.
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