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.

Christmas Gifts

It wouldn’t surprise me if Jeff asked Santa Claus for a break from doctor visits for the holiday season.  We cancelled his December 29^th appointment with the family doctor because the abdominal pain that hung on for at least two months (before and after the hospital stay for chicken pox) seems to have abated. 

Visits to the kidney specialist and the gastroenterologist – bad news and good news respectively – closed out the year 2016.  For some reason, we both had been experiencing some anxiety about these visits.  Sometimes we are able to take the uncertainties in stride and sometimes they get the better of us. 

Jeff is officially old.  We had to buy a blood pressure cuff for when the Lisinopril – which has been increased to 15mg a day (from 10) – makes him dizzy.  His blood pressure tends to be low and with an ACE inhibitor, it is even lower.  This medication is supposed to help the proteinuria but after the last dosage increase his urine protein was higher instead of lower.

Patients with proteinuria, according to Kidney Specialist Dr. Carpenter, fall into one of three buckets:  one – it goes away, two – it stays the same, or three – it progresses and can eventually cause kidney failure.  Dr. Carpenter didn’t want to say which bucket Jeff fits in.  I asked if we could choose.  Another urine test in a month will tell us whether a referral to a city doctor is in order.

During Jeff’s hospital stay in November he’d had an irregular heart beat and he passed out in the ER so an echocardiogram was ordered as a precaution.  All good there!  The cardiologist noted Jeff’s low pulse, “Like an Olympic athlete!”  Since then Jeff has often reminded me (with a weak voice while falling asleep sitting up in a chair) that he has “the heart of an Olympic athlete and the body of an 80-year-old.”  He’s so cute. 

Gastroenterologist Dr. Frank had good news for Jeff.  A follow-up colonoscopy after last year’s removal of a “very large, precancerous polyp” revealed only one small polyp - which was also removed.  And he heard the words he so hoped to hear, “Come back in five years.”  Joy!!!

He was not, however, able to pop up and leave right after his procedure.  When his nurse showed me to the recovery area I noticed his blood pressure was 73/58.  I thought maybe I was reading the wrong area of the digital screen.  Nope.  The nurse told me it had been lower and it was slowly coming up.  He couldn’t leave until his blood pressure was at least 100/xx.  It went up to 85 which Jeff attributed to seeing me (he’s such a charmer).  After awhile of slow progress, the nurse suggested a little walk.  He was dizzy but the walk did the trick.  It went up to 99 and then 101!  Home Ho! 

On the way home we saw Neighbor Carmen outside and asked her about her husband - and the ambulance we’d recently seen at their house.  He has had a couple of falls from which he could not right himself.  Jeff offered to rake the leaves in their front yard.  Although he wasn’t supposed to work the day he’d had anesthesia, he went right over to do as he promised.  I thought helping a neighbor might wait for another day.  Silly me. 

Jeff winks his bad eye closed when he finds his poor vision particularly annoying.  He does this far less frequently than he did right after his cataract surgery and complains about it far less often.  He must be getting used to it. 

Despite the challenges, 2016 was a terrific year and we are blessed to have the gifts of family, friends and each other.  May you all find gifts of the spirit under your trees this Christmas!

Pillow Talk and Gratitude

“We’re lucky,” Jeff said during early morning pillow talk.

“I know,” I said.  “But why do you think we are lucky?”

“Because here we are, next to each other.”

Sweet.  That’s what I was thinking, too. 

Jeff is recovering from his second cataract surgery which, unfortunately, did not have as good results as the first.  After surgery, the vision in his left eye became so impaired that he doubted he would be able to read the big “E” on the eye chart.  An extra visit to the eye doctor relieved some of his anxiety (he could, in fact, read the “E” and, with a special paddle with pinholes, he could read the whole chart).  However, he will need another surgery, probably in January – rather than at six months as Dr. Pendse predicted on the day of his surgery.  Dr. Pendse described the eye as having the shape of an M&M candy and said he was unable to remove as much of the cataract as necessary from behind the “candy coating”.  He needed something stable on which to attach the new lens.

You might think that there would be driving restrictions for someone whose vision was suddenly made worse.  No.  None were given.  I drive whenever we are together anyway because Jeff often has fatigue.  We’ll see whether he will be able to work since his prescription glasses don’t help him right now and he can’t be fitted for new glasses until the left eye is dealt with.  Sometimes the poor vision in that eye frustrates and annoys him.

Jeff took advantage of this week of recovery to do some errands.  Yesterday, after his blood draw for Dr. Pat, he planned to get his driver’s license picture taken and then get a haircut.  He joked, “Will it look suspicious if I get my haircut after my driver’s license photo?  Like I’m trying to change my appearance?” 

I said, “Oh, you know what?  You should probably have ‘Organ Donor’ removed from your license.” 

Jeff slid the license paper aside to reveal the flyer on organ donation.  He studied the pictogram and quipped, “Well, let’s see.  Maybe there’s something they can use.”

I said, “I don’t think so.  Once you’ve had cancer…”

Jeff seemed to ignore me.  “Liver,” he read, “no.  Kidneys, no.  Pancreas, probably not.  Eyes, no.  Skin, no.  Veins, no.”

I joined in the game, “Lungs.  Your lungs are okay!”

He did have the Pennsylvania Department of Transportation remove “Organ Donor” from his license but not before confirming that he really, truly could never again be an organ donor.  It must be a hard realization to come to after years of willing inclusion. 

Daughter Kim suggests her dad grows his hair out to 8” or more so he could donate his hair (as she will soon do).  Ha!

We are thankful for willing donors – those who list “Organ Donor” on their driver’s licenses on the chance they could be of some use after their own demise.  And we are grateful for those who swab their cheeks for potential bone marrow donation – and even more grateful for those who answer the call and give the gift of life.  We hold Jeff’s donor Nicole in our hearts this Thanksgiving.  Her marrow makes possible our pillow talk and laughter and life.