Good News, Bad News, Good News

Good News, Bad News, Good News

Good News:  Jeff’s kidney function is good.  If his numbers are good in September, Dr. Pat will push out the following visit to six months!  Woohoo!

Bad News:  Our blood cancer networking group had six new members this month. Some of their stories are pretty sad: a husband/caregiver who was himself diagnosed with cancer a year after his wife’s blood cancer diagnosis - when their daughter was 4 years old, and a single mother of a 9-year-old blood cancer patient with unique challenges, and a quiet but tough cop whipped by a blood cancer diagnosis.  We greeted them all, “It’s nice to meet you.  Sorry you are a member of the club.”

Good News:  Although the tissue box was passed along as the new members shared their stories, everyone was uplifted and laughing by the end of the meeting.  And that is part of the reason we still attend this group.  One man tentatively asked Jeff, “I don’t know if this is okay to ask but do you have foamy urine?”  Michael – who could have probably answered the question on Jeff’s behalf - assured the new member, “There is nothing you can’t talk about here.” 

Thank you to Gilda’s Club for providing a safe place to discuss the unmentionable and to the members of our group – “old” (6 years) and new – who help us find purpose in Jeff’s cancer experience.

"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.

Spin, Kim, Spin!

Guest blogger/Daughter Kim asked for a chance to plug her next fundraiser for the Leukemia & Lymphoma Society.  Kim began fundraising for L&LS when her friend was diagnosed with lymphoma.  Just a few years later her dad was diagnosed with MDS.  Her efforts continue:

Greetings!  I have been roped into a Flywheel event to raise money for the Leukemia and Lymphoma Society on Thursday, May 18th.  My friend's sister is a coach for LLS's Team in Training and is currently helping to fundraise for another LLS event, Man & Woman of the Year. I always said it would take a lot for me to participate in a spin class, i.e. a million dollars, a small private island/jet, or a fundraiser for a charity that benefits people I love who have been affected by blood cancers.  And the day has arrived!  

Next Thursday, I will be spending 45 minutes on a bike (hopefully) to raise money for the LLS.  I would greatly appreciate any donations you can make to the cause.  Thanks for your support!

http://events.lls.org/pages/epa/flywheel/klouxz

Immune System Booster: Laughter

“Ah, funny!” says almost-two-year-old Penny with an adorable, deep laugh. 

Penny finds amusement in both the ordinary and the extraordinary and we laugh along with her.  It’s impossible not to.

Laughter is good.  Medicinal, we’re told.  And science backs up that claim.  An article, “Laughing Your Way to a Strong Immune System” by Anne Belcher, appeared in a health bulletin that crossed my desk at work recently.  A version of the article is available here:  http://www.igrc.org/blogpostsdetail/4421954   Evidently, more T cells are released from the spleens of “laughers” than “non-laughers”.  Those T cells, now present in the bloodstream, fight illness. 

A good belly laugh can increase your pulse from 60 to 120 in just a few seconds, according to the article.  Yes, laughter is good exercise!  Laughter-exercise releases endorphins which we know act as pain relievers and mood boosters.  Oh, the health benefits enjoyed by laughers!  I hope you are one!

Can we hone our laughing skills as part of a personal wellness program?  If we want to stress less and laugh more, the article suggests keeping a jar of jokes at hand, laughing at your own mistakes, letting others see you being silly, and keeping a list of things that made you laugh during a five-day period and then collect that type of humor.  I particularly like the idea of becoming a humor collector.  It reminds me of my father’s incredible ability to remember jokes – and his skill in delivering them.

When I think of someone who makes me laugh, I think of their laugh or smile.  The memory – which is linked to the reasons I love that person - makes me happy.  I might add this to the list of suggestions:  Make a list of people who make you laugh and spend lots of time with them.

Daughter Kim takes humor so seriously (ha!) that she takes comedy improv classes.  We like to see her shows because, well, we laugh a lot.  She and the other players get silly – speaking gibberish, miming action, telling stories one word at a time - and we are delighted to watch! 

A co-worker mentioned he was volunteering at the library book sale and it brought to mind an embarrassing moment of some 18 years ago when I was volunteering at the library sale with then 12-year-old Daughter Kim and her friend.  I began laughing at the memory, and then tears came with the laughter.  My coworkers laughed with me - and I hadn’t even told the story yet!  Here it is:

I inadvertently propositioned a man at the library book sale.  He was walking toward a table where the girls and I were beginning to box up the unsold books.  Really, I was only trying to be helpful when I asked him, “Are you looking for romance?”  The man’s eyes got very, very wide and he backed up to the door, then turned and left.  No sale.

It seems odd not to mention the subject of this blog, my humorous honey.  So, some good news: Jeff’s city docs have stretched out his visits – hematology/oncology from every three months to every four months and dermatology from six months to one year unless something crops up.  Not funny.  Just something to smile about.

         

What a gift, to be a laugher and to be surrounded by laughers!

Better Vision, Better Outlook

Jeff watched an orange laser light show, his chin and forehead resting against the metal frame mounted on the ophthamologist’s microscope.  Dr. Pendse projected crosshairs on Jeff’s left eye and zapped away – by quadrant - the debris left after cataract surgery in November.  Then he whooshed the bits to the edges of Jeff’s field of vision where they will be absorbed by the body.

Jeff’s description of the procedure was matter-of-fact, no hint of his pre-cancer squeamishness.  This is the man who once nearly passed out at the eye doctor’s office.  Well, okay - he was, after all, having metal removed from his eye.  This time, though, he had been more nervous about whether his vision could be improved rather than the means by which improvement might be accomplished.  Once finished with the laser procedure, he went home and took a nap. 

Happily, hours later he believed his vision was better.  He told me that there is “still something there, like a hair” but things appear much clearer.  A week later Dr. Pendse performed the procedure in Jeff’s right eye and, again, “something’s in there” but there is improvement.

Eyes, kidneys, liver and skin have all been affected by the transplant experience.  And, of course, there is the fatigue.  Fatigue is a curious thing.  It can sometimes be ignored and sometimes must be acknowledged and given into.  Jeff takes naps three or four times a week for one to three hours each.  Twice a week those naps occur when Jeff is with our granddaughters.  On the weekends we work around his naps, adjusting our plans as necessary. 

Fatigue can also cause depression or, at least for Jeff, confusion.

“How can I be so tired and not be sick?  How do I know it’s just fatigue?”

I remind him that his blood counts have been great so… no cancer.  I suggest he talk to Dr. Porter about his concerns but whenever he goes to the doctor’s office, he forgets to mention them. 

Jeff asked me to go along to his next visit.  With a little prompt from me, he asked the doc about disease recurrence.  For a large percentage of patients who are, as Dr. Porter explains, “destined to have a recurrence”, it happens within two years of transplant.  For another large percentage it happens by five years post-transplant. 

I remembered seeing charts showing the five-year survival rates in patients with MDS and AML who had bone marrow transplants.  At the time of diagnosis, those numbers were frightening - with that terrible drop in the first two years and then a too-low percentage surviving five years!  And we’d feared that “you have an incurable cancer” meant that the survival curve continued a downward trend after five years - although the rate of this decline was unknown to us.  We imagined the chart only needed to show maybe, what? - another five-year period before reaching a no-survivor vanishing point.

Dr. Porter said the issues Jeff is having (related to treatment and meds) are annoyances – particularly, he guessed, the vision issues.  Jeff will always have to take immunosuppressants for GVHD.  However, Dr. Porter does not see any of these issues as insurmountable.  If asked, he would sign a life insurance form “cured of leukemia”. 

The language of cancer is interesting to me. I am pragmatic in most things; I ponder probabilities – it helps with planning for the future, right?  (Ha!)  With a few words from Dr. Porter I began to consider that Jeff could be in a group of people for whom recurrence is not inevitable.  Jeff, on the other hand, was always sure he would survive.  His faith - which I mistook for denial early on – and his humor have kept us both from going to dark places. 

At the kidney specialist’s office, an intern was searching online for the results of Jeff’s “echo”, the echocardiogram that was done after his November hospital stay for chicken pox.  Jeff sat behind her and called, “HELLO, Hello, hello, ‘ello…”  The intern chuckled.  Jeff was very pleased with himself.

As we approach the six-year anniversary of his transplant, it seems more and more likely that we will have a lot of time yet together. 

I read this to Jeff, as I always do before posting.  He laughed and said, “Just in case, we’re keeping our life insurance policies up to date.”

Now who is the pragmatist?

Winter Respite

Siesta Beach, Florida

Since the New Year, Jeff has been feeling well with only a minor bout of conjunctivitis requiring medical attention.  I noticed that he naps less frequently and his days, therefore, seem longer.  This allowed us to squeeze more fun into the last few weeks than we’d had in a while.  We enjoyed a weekend in the Poconos with family, indoor biergarten at the Cannstatter on several Friday nights, a day in the city with Daughter Kim.  We spent a week in Sarasota, Florida, visiting friends and seeing a play directed by Friend Kathy.  We saw a performance artist at Rider University.  And, of course, we spent a lot of time with our granddaughters, including an impromptu sleepover!  Whether or not this pace continues, I must say that it was really nice to put more than doctors’ appointments on the calendar.

Another fun day was spent at the Philadelphia Car Show.  This would usually be a Guys’ Day Out for Jeff and our sons, Kerry and Keith, but this year we had a particular mission which involved the ladies as well.  We were on the lookout for minivans for Son Kerry and Daughter-in-law Theresa’s expanding family.  By July, only a car that will fit three car seats will do!  Kim teased her brother, “I bet you never thought you’d say, ‘I’m going to the Car Show to look at minivans!’”

An email came to me at work last week that pleased Jeff and me immensely!  Rushit, Rider University’s Campus Ambassador for Gift of Life Bone Marrow Foundation, said that Rider had just approved a campus organization called Rider Bone Marrow Registry.  It was Rushit’s hope that this worthwhile work would continue after he graduates.  We look forward to helping with the swab station at Rider’s Relay for Life next month as well as helping the club in any way we can.  The potential good that can come of this is humbling.  Lives may be saved!

Although Jeff has had only one doctor visit since the first of the year, he has had labs done twice.  And so it all gears up again…  Coming Soon!  Appointments with the kidney specialist, oncologist, ophthalmologist, dermatologist and dentist.