"I'm Happier Now"

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 Café 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.

Prayers, please, for the family and friends of Big Rich, an MDS patient who passed last week of GVHD of the liver and lungs.