We have heard stories from cancer patients about the crazy ways disease is discovered. Jeff had a bad case of poison ivy that sent him to the doctor. Friend Michael broke his neck while boogie boarding with his son which led to a diagnosis of Multiple Myeloma. At the MDS Foundation Family Coping and Caring Luncheon at the White Dog CafĂ© in Philadelphia last month, two of the six patients in our group were diagnosed after being deferred (for low hemoglobin) at a blood drive! There’s another reason to donate blood, if you are able – free mini-screening for blood problems.
The MDS
Foundation sent out a call for participants for a study on AML symptoms. Data would be collected via a phone interview
which I knew Jeff would prefer to the tedious online surveys that ask “On a
scale of 1-10 how significant were the following…”
MDS
sometimes turns into AML, as it did in Jeff’s case. Jeff went from MDS, to AML, to transplant so
quickly that it didn’t seem likely he would qualify for the study. An online questionnaire for Jeff and another
for his oncologist, then a follow-up email with the study team and he was
in! He was happy about that. Then he began to express anxiety about his
ability to answer questions because, he said, “You’re the one who knows this
stuff.” The study was about symptoms and
side effects. It would not include
naming drugs or giving specifics on the timeline of events, things his memory
has gloriously - and fortunately - muddled.
He asked me to schedule his session on a day when I would be able to sit
beside him for moral support.
I admit
that as the day approached, I wondered how useful Jeff’s contribution would be,
given his poor recall of that time. Just
before the phone call I primed his brain, “Remember that the study is about AML
symptoms.” He said he didn’t remember
ever hearing that he had AML. Oh, boy. I
reminded (informed) him that after four months of Vidaza treatments he had a
bone marrow biopsy which revealed the disease had morphed into AML. AML was the reason for his first hospital
stay – to get his blasts down and make him viable for transplant. “Think about the symptoms you had during that
time.”
The
phone interview took place during what would normally have been Jeff’s
naptime. We’d put our granddaughters
down for their naps and placed the call.
Researcher Sengyeon got Jeff’s permission to record the call. Jeff asked if he could put her on speaker
phone so I could listen. Hearing the
questions as well as his responses made it more interesting for me and allowed
me to jot down an occasional prompt on a pad of paper – “typhlitis”, “one month”,
“memory”.
Jeff
seemed to be having difficulty answering the questions that were asked but he
kept talking. Sengyeon was patient and took
good notes about his symptoms which she recapped later. After the open-ended questions, she asked,
“Now I’m going to tell you some symptoms that other patients have described and
you tell me whether you ever experienced them.”
Then Jeff remembered!
“Oh,
yeah, I had diarrhea! Yes, vomiting,
too. You’re making me remember all the bad
things!”
Memory
problems were discussed although Jeff isn’t a very good judge of his own losses
in this area. The question about sexual
function was followed by a long pause (I was curious what he would say) and
then his response, “No. No problems
there.”
The
final question: “In what ways has AML
affected your life?”
Jeff said
life-before-cancer did not involve incessant doctor visits and he feels that some
family members don’t seem to acknowledge what a significant change that is for
him.
Then he
supplied another consequence of cancer:
“I’m happier now.”
The interview
lasted an hour and a half. Sengyeon
graciously thanked Jeff for giving up his nap (he’d admitted to skipping his
nap mid-interview when he was slow to articulate his answers) and she
apologized for causing him to remember things he might prefer to forget.
Later I
told Jeff how surprised I was to hear he believed he was happier.
“Well,
don’t you think I am?” he asked.
“You
were always happy,” I said.
I
suppose his increased joy could have something to do with savoring life,
recognizing each day for the gift it is.
I wonder how many participants gave similar replies. If it is a common sentiment, the researchers
are lucky to hear it again and again.
Jeff
was paid a fee for his participation and he knew immediately what he wanted to
with the funds – donate it back to a couple of the organizations that have
helped us both cope with life after treatment.
