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:
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.