Friday, July 11, 2014

The Myeloma Beacon

The Myeloma Beacon is one of my favorite sites for getting input into other patient's experiences.  A recently column by a myeloma survivor, Andrew Gordon, talks about how myeloma changed things. It's a good read.  Here you go:

Myeloma Lessons: I Am Not Alone Anymore


The title of this column is a bit of an overstatement. I never lived alone as a her­mit in a cabin in the woods. I have loving, caring family and friends.
However, I have always been comfortable with a fair amount of alone time. In fact, I often crave it.
I heard a recent radio interview with Jane Goodall, the famous prima­tol­o­gist and anthropologist. The interviewer asked her if spending years in the jungle among the chimpanzees drove her stir crazy. She said, “Not at all. From the time I was a child, I always enjoyed being alone.”
I thought: That is me.
Even as an adult, taking long bike rides alone, or walks in the woods accompanied only by my own thoughts, has been comforting.
One of my fellow Myeloma Beacon columnists wrote recently that, prior to her myeloma diagnosis, she didn’t think too much about doctors and rarely needed their help. That describes me as well. In fact, usually when I went to a doctor, the result was: the tests are negative — nothing serious to worry about.
Which is why, when the first signs of myeloma appeared, it never occurred to me that anything was seriously wrong. That sore spot on my head that persisted for months? Just an invisible mole or an ill-fitting bike hel­met. The pain in my back/rib? Just a muscle strain or spasm.
Much has changed since my myeloma diagnosis was confirmed, and it changed rather quickly. I was ad­mit­ted to the hospital with severe anemia on a Friday evening, had a bone marrow biopsy the following Monday, and saw the myeloma specialist on Tuesday. A week later, I reported to the infusion center for my first Vel­cade (bortezomib) shot and Zometa (zoledronic acid) infusion.
I have always prided myself on being pretty self-sufficient. I have never liked asking for help or having to rely on others to do what I can do for myself. But, after the events I just described, it became clear very quickly that I was going to need a lot of help.
Some of the help I would need was obvious: Having a strong medical team of doctors, nurses, technicians, and other medical support personnel would be essential. Of course, I would also need the strong support of my wonderful girlfriend/caregiver.
But one thing I had not counted on at first was the physical restrictions I experienced. Once my transfusions took effect and I had my energy back, I felt pretty good (except for that pesky rib pain). However, my doctor said I had to limit the weight I lifted to 10 pounds.
Well, that seriously restricted what I could do around the house. Now, I must confess that I have not strictly adhered to that limit, but I have been careful about lifting heavy objects. So now I need a neighbor, relative, or friend to do the heavy lifting.
This sometimes makes me feel a little helpless.
This past winter was particularly harsh here in Pennsylvania, where I live. Plus, I had my transplant at the end of January. So my neighbor, my son-in-law, and his father had to shovel the snow around my house. All I could do is stand by the window and watch.
Another aspect of accepting help revolves around learning about dealing with the disease.
As most of you know too well, treating myeloma is as much art as science. To be sure, the science part is extremely sophisticated and is advancing at a rapid clip. But there is no complete consensus on how to treat a particular patient presenting a given set of symptoms.
There are “schools of thought,” different approaches, and strong but conflicting opinions among myeloma experts. My initial treating doctor told me that declining to proceed with a transplant would be “suicide.” Another equally prominent expert thought that position was silly. So how do we make these important de­ci­sions?
For me, the answer was, and still is, that I need help.
There are vast resources available online to research the disease, the treatments, and the developments on the horizon. It truly is amazing what is available in the way of research papers, interviews, and scholarly ar­ti­cles.
But just as important as the help available for understanding the science of the disease has been the help from fellow myeloma patients who have taken their time to share their personal stories and insights into how to deal with the many challenges myeloma creates.
Through the Myeloma Beacon’s discussion forums, I have met many people who have been so helpful to me. Sometimes they helped me by commenting on questions I have posted in the forums, and other times through an exchange of emails or telephone calls.
Coming to terms with the need for all of this assistance has not been easy for me. When you have been used to being the strong one, the one who can fend for himself, and the one who always has the answers throughout your whole life, it is difficult to become so reliant on others.
But there is a lesson here, as there often is when life throws you a curveball and forces you to change.
Becoming more reliant on others also brings you closer to those who step up to help. You appreciate not just the fact of living, but the people around you who make living a wonderful thing.
So far, dealing with my medical condition has taught me quite a bit about myself. But even more so, it has taught me about the great people who have come forward to help.
So I am not alone anymore, even in a relative sense. I am not happy for the reason why I find myself there, but I treasure the increase in company that I keep.

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