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Myeloma In Paradise: Carrying A Cancer Patient
By: Tom Shell; Published: September 21, 2015 @ 5:10 pm | Comments Disabled
If you have ever read any of my past columns, you will already know that I am all about “carpe diem,” or seizing the day. My father is my inspiration for this outlook. He has spent 50 years battling debilitating multiple sclerosis (MS) with a positive attitude that has allowed him to do the most with whatever he has each day.
My father's amazing ability to keep plugging away with a smile through his life-altering disease has carried me through the difficult task of trying to live with multiple myeloma.
Unfortunately, his battle may soon be coming to an end, as he has been given his own terminal diagnosis: plasmablastic lymphoma, a very rare and very aggressive form of lymphoma. Because of his weak physical condition due to MS, my father has decided not to fight this new disease and instead has entered hospice treatment and is only receiving palliative care.
How very ironic that, after three years of determining how to live with my terminal disease, I am faced with a terminal diagnosis of my father – the primary inspiration for how I have dealt with my myeloma. It was truly a moment to decide if I was really ready to “walk the walk” instead of just “talk the talk.”
Turns out that it wasn’t much of a decision after all. It seems very natural to me to accept his fate and move forward with as much grace and positive outlook as possible.
Of course, I’m still not talking about my own death being as imminent as my father’s, so I can’t say for sure that I won’t turn into a bubbling mass of sobs when my time is near. But this is as close as I am ever going to get without meeting St. Peter myself.
I was very concerned about how my Dad was handling all this until I actually spent some time with him last week. Once I got off the plane, it was clear that Dad was still the same smiling man I last saw about nine months ago.
What a relief! Any doubts I had about my/our philosophy of keeping a positive mental outlook were immediately banished. Like many myeloma patients, he didn’t look or seem any different than he was the last time I visited. While his memory is taking a major beating from his MS these days, and his body continues to shrivel from 25 years in a wheelchair, his smile is as big and warm as ever.
Unlike most myeloma cases, Dad’s cancer is very aggressive, and he has been given only 3 to 12 months to live. My trip was intended to squeeze out as much enjoyment as possible with him before he becomes too debilitated.
Since we have no idea when the cancer will start to overwhelm him, we needed to decide how to make the most of each day. After a bit of discussion and debate – including some back-and-forth about possible trips to Mexico, Hawaii, Alaska, and California – it was determined that Dad was really much more comfortable staying at home and sleeping in his own bed. Turns out those trips were more my desire than his!
What he does want to do is swim, swim, and swim some more. The man has a serious addiction to the water! All these years in a wheelchair have left his backside pretty raw, so the gentle support offered by the water of a pool is great relief. It is also almost the only way left for his frail little body to get some exercise.
So we swam. We swam every day I was there. His townhome complex has a pool, but he is completely unable to use it anymore as he can’t get into or out of the water. Since the pool is 50 feet outside their front door, I couldn’t see the sense in going to the city pool to use the handicap assist lift.
Our first attempt at getting him into and out of the pool near his home was a clumsy awkward affair, with me, my sister, and my mother all carrying a different body part. This fools ballet saw his feet come away bleeding from scraping on the rough surface of the pool deck.
On the second day, it was just him and I, so I decided to go a different way and just carried him like a baby cradled in my arms. To get out, I just floated him into my arms and walked up the steps of the pool and set him into his chair. Much easier!
I remarked at how unusual it was to have one terminal cancer patient carry another. That’s when it occurred to me that Dad had been carrying me for years now and I didn’t even know it! His infectious positive outlook has led me to treasure all I still have even though I have myeloma.
I am so VERY honored to have the strength left in my body to carry him to the thing that gives him the most satisfaction in his life.
It’s amazing to me that with all the options we have available to us, there is nothing that he wants to do more with his life than to go for a swim each day, and there is nothing more I want in mine than to be able to give this to him.
I love you, Dad. Thanks for carrying me all these years.
Aloha and carpe diem!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here [1].
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