We were told that Joanne was "lucky", because her lymphoma was an indolent
type, follicular non-Hodgkin's Lymphoma. This in 1996.
Being a caregiver, I have only indirect experience about these matters. But I recall how unusual the sounds of normal life sounded to me
after Joanne's diagnosis. I remember thinking: How can people be excited
by a ballgame, or even put out the garbage?
Okay, everything being relative, we can say it's usually much better to have
follicular lymphoma than a brain cancer, or metastatic lung cancer ... when
you're told to get your affairs in order because you have months to live.
So what can happen?
It varies. A good many of us can live long and well with indolent lymphomas. Some small fraction may never need treatment. The
majority, it seems, may need first treatment within three years of diagnosis. Many of us
- a decreasing majority - will need treatment repeatedly over many years.
Also, we should recognize and respect that a minority will have a very
difficult time from the very beginning (such as LovesToRead, and Jim) ...
despite the selected approaches to treatment or lifestyle strategies. There
are many varieties of follicular. Joanne has one kind; Jim had another.
So what's to worry about?
The variety of follicular lymphoma we might have, which we can't control. The risk of progression or relapse, which we can't
control The risks and toxicities in treatments, which are often effective
but still mainly trial and error ... The worry about test results, which can
be like waiting for the verdict from an indifferent jury.
These quality of life affects are sometimes called the psychosocial impact
of being diagnosed with indolent lymphoma. Does giving it a name help? The
diagnosis is certainly nothing to be dismissed. "Do not worry" doesn't fit.
I suppose a lot depends on our natures and temperaments. My way was to direct my worry into learning about the
disease and its treatments - finding promising new therapies and hopefully
the process itself would add meaning to my life.
My concern is for unproductive worry ... the type that can erode the present
moment; removing our capacity to see and take pleasure in what we have right
now. To shake free of it I try to remind myself that, eventually, everyone
will face their mortality, and that many people never even get past
infancy. So we have now, and I've found that now can be a pretty amazing
thing when I bring myself to look at it.
~ Karl Schwartz
Patients Against Lymphoma