Lab work? Done &
waiting for results. PET and CT
scans? Likewise done and awaiting
results. Bone marrow biopsy? Not for another three weeks yet. UNACCEPTABLE!
Conventional wisdom maintains that you are your own best
advocate when it comes to your health, and that one must take a proactive
approach. Being impatient doesn’t hurt
either…..
Over the past few days, I began to get pretty anxious at the
prospect of having to wait another three weeks before having the final diagnostic
test that will enable the oncologist to stage my lymphoma. Yes, it’s indolent (slow-growing), so I’m not
worried about my cancer cells careening out of control over the next few weeks –
but, as you may recall from an earlier post, I deal best in concretes and
definites, and hate ambiguity. Having
all the tests done except one leaves everything vague – no staging, no
treatment plan. Remember, I’m the one
who needs DATA and lots of it. Having
the bone marrow biopsy will be the final step for the oncologist to assemble
all the facts so she can give me what I need:
INFORMATION, a direction, a plan.
Lymphoma in the bone marrow automatically ratchets the
disease up to Stage IV, which significantly affects treatment. Now, don’t confuse this with Stage IV of,
say, breast cancer. Both Hodgkin’s
lymphoma and Non-Hodgkin’s lymphoma (the type I have) are very treatable even
at Stage IV, whereas other forms of cancer at higher stages are much more
difficult to get under control.
I just want to know what I’m up against. How widespread is it? What organs, if any, are affected? Are there tumors, or is it confined to the
lymph nodes? And waiting another three
weeks to have the final test just ain’t gonna cut it.
So I got on the phone today and advocated for myself. I told the oncologist’s nurse that I was stressing
about the lag time; he listened to me and understood my concerns, and by the
end of the phone call, I had the appointment rescheduled from May 30 to May 9.
So, the day after tomorrow, I get to have a long needle
pierce the flesh on my hip to extract marrow and quarry a small piece of
bone. And I’m happy for it. It’s a
step closer to having all the data. It’s
forward motion and being proactive. And
it’s a satisfying bit of self-advocacy.
Bring on the biopsy!
