Myeloma In Paradise: Carrying A Cancer Patient

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.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
..An amazing awareness of his condition, yours, and time...slipping away.
May you have a wonderful time(s) together.
The pool is very soothing.
We come in to this world floating on amniotic fluid, and we go out....
Good luck.
This is a wonderful tribute to your father.
You brought me to tears. Not of sadness but, for love and family and the memories of my father. He was very special to me. Reading your column reminded me of that special bond. Thank you!
Enjoy your time with your dad.
Very inspiring and energising.....
Your love for your dad is outstanding. Thanks for sharing your life with us. You have strengthened us all.
Your father sounds like a wonderful man who raised a wonderful son. I'm sure it's a very difficult time but also how incredibly special. Thank you for inviting us in.
Hi Tom, I read all your columns, but had to comment on this one. Just so beautiful and heartfelt...
My heart and thoughts go out to you and your family during this sad and challenging time. Life never ceases to throw us "unwanted" curves
(I believe you and I are both IgA myeloma, and deal with all the awful GI side effects of IgA and our meds.) So enjoy each day you have with dad, and whatever he can do, or wants would be the goal. My mother passed from awful Alzheimer's just 2 months after my myeloma diagnosis 12/2009.
Take care, one day at time, and no rules or expectations, just what feels right. You are a very loving and loyal son! Go swim!
Aloha,
Thank you all for your supportive comments. I was concerned that this might come off as too narrowly focused on my Dad's plight. I am really glad if you found some inspiration from our story.
Thank you very much.
Tom
Tom,
I always read your column, it's always great! Your father sounds like an incredible warrior, and such a positive role model. Enjoy the time you guys can spend together
P.S. My husband and I just got back from the Big Island on our honeymoon, so Aloha!
Beautifully said and beautifully done....
Tom - you, your father and your family are in our thoughts and prayers. How brave you and your father are in coming to terms with your father's condition and I pray that these next few months are lived to the fullest. Our stories and experiences along our multiple myeloma journeys carry and support all of us. Thank you for sharing.
Tom,
I wish your father peaceful days. How fortunate to be able to be with him and to share in his enjoyment of simply swimming. Thanks for letting us know what is going on for you. Life gets down to basics – loving and being with others.
Thanks for the heartfelt column, Tom. It is nice that you could spend time with your father now, and enjoy the soothing waters too.