A Corn? Really?

After all that Jeff has endured and survived, he was disgusted to realize he needed minor foot surgery for a corn that had been giving him trouble for a few months.  He followed the post-surgery instructions fairly well – when and how to keep the incision dry, and later when to soak it, ointments, bandages.  When his foot was still fairly sore, he dropped a fresh bar of soap very close to the incision while showering and bruised the area further!  Drat!

Just one hitch with the foot surgery itself.  The surgicenter called the evening before the procedure to remind him to take his Lisinopril.  Jeff reasoned that heart patients are told to take their Lisinopril to keep their blood pressure down during surgery but that in his case, it was NOT a good idea to lower his already too-low bp.  His kidneys would survive.  As it turned out, he scared the anesthesiologist with a very low bp during surgery.  The poor man visited the recovery room frequently and emitted many loud sighs of relief as Jeff’s bp inched back up to his normal.  I wonder whether Jeff maybe should go to a hospital for short procedures rather than to a surgicenter.

Granddaughter Penny asked Grandpop how the doctor put him to sleep for his procedure, “Did they sing Hush Little Baby?”  She is fascinated with injuries and had the good fortune to accompany Grandpop on his follow-up visit with the surgeon.  She was very curious and insisted on watching the removal of the stitches.  She asked, “Grandpop, when are you going to cry?”  Pre-BMT Jeff may have passed out when having stitches removed but he has become a much braver man!

Otherwise, doctor visits are further between - and that seems okay.  He has dental and eye visits coming up.  So very, very ordinary.  In fact, Jeff is getting practice as a caregiver since he’s had to drive me to the retina specialist several times.

We are excited about Rider University’s Bone Marrow Registry, a campus club which I am advising.  This year the club is flourishing under the leadership of a sophomore biology major, Ally, who serves as a Gift of Life Campus Ambassador.  Gift of Life offers training and support for Ally’s team of cheek-swabbers and, through connection with other universities' Campus Ambassadors, ideas for promoting swab events on campus in very creative ways.  I love this program and hope we see folks in need of marrow or stem cells matched to Rider students and alumni in the future.

8-year Survivorship Anniversary

May is a big birthday month for our family.  Two of our children and two of our grandchildren celebrate birthdays in May.  And this year Jeff celebrated the 8th year anniversary of his bone marrow transplant.  He thanks Nicole for 8-Year Survivorship Anniversary.  We continue to be grateful and while we (or maybe, just I) may seem to focus on Jeff’s care, we do not think about recurrence.  Eight years and counting…

Jeff has accepted that his weekdays must be planned around doctor visits.  I have not heard complaints about these interruptions in a while.  It’s his job to take care of himself.  And sometimes he works, too.

To deal with Jeff's swallowing issues, his endocrinologist stretched his esophagus, and ordered a repeat endoscopy in six weeks.  It seems to have helped.  Jeff says he can eat even faster now!  Ha.

The kidney specialist reports Jeff's uric acid and creatinine are a little high.  His kidney function is at 61% while 70% is age-appropriate.  Below 60% would require further treatment.  Jeff was very disappointed to hear this but Dr. Pat said, "You've been through a lot.  So 61% is good, considering."  His medication drags his blood pressure pretty low at times, 90/60 last night.  Dr. Pat would prefer it in the area of 120/ but that is seldom achieved.   

As we enter summertime, I am concerned about the difficulty Jeff has in drinking enough water to protect his kidneys.  When he talks about taking on outside jobs, I wish he wouldn't.   I'd rather he works inside, in air conditioning, with minimal ladder work, on easy jobs that don't require a lot of heavy-lifting.  Jeff sees it differently, of course.  Summer is the time to be outside.

I decided, with Jeff's nudging, to address my ongoing Caregiver Syndrome.  I've delayed mammogram, colonoscopy, eye exam, blood labs for primary care doc, even the dentist.  I made appointments to take care of all of these things and it's a good thing I did.  The ophthalmologist found I had a retinal issue and referred me to a specialist who diagnosed BRVO which would cause vision impairment if not treated.

I recently spoke to a friend who is scared of doctors.  I told him that, at the time of Jeff's diagnosis of MDS, my brother asked what he could do.  Jeff's response was, "Go get a physical."  Good advice.  Job one: take care of yourself.

We attended the Leukemia and Lymphoma Society's Man/Woman of the Year Gala to support our friend, Michael's campaign.  Michael took home the Mission Award.  This was well-deserved because Michael, Monique and their family are relentless in promoting the mission of L&LS.  We are proud to know them and pray Michael achieves his goal of living long enough to see a cure for Multiple Myeloma.

A Month Early and a Year Later

Jeff took the train to the city for his six-month visit with Dr. Porter.  This was the longest stretch to date between appointments and he was eager to see Nurse Heather and Dr. Porter - more on a personal level than for their medical expertise.  

He must have been a little too eager to see them.  He gave his name at reception and, when the receptionist couldn't find his name in the day’s appointments, Jeff realized his mistake.

"I don't have an appointment today, do I?"

He'd arrived on Tuesday, February 19th instead of Tuesday, March 19th - a month early!  He said it was a "practice run”.  The construction between the train station at University City and the Perelman Center had progressed quite a lot in the six months - well, five months- since his last appointment.  Even the road had been straightened and the news stand relocated.  

At his actual six-month appointment, Heather told Jeff that Dr. Porter would have seen him on his earlier trip if he'd only asked.  Apart from telling Jeff to follow up with the family doctor and a gastroenterologist about a swallowing issue he is experiencing, Dr. Porter had nothing much to say.  He was confident Jeff will continue to do well and said the most amazing thing.  "Come back in six months. No!  Let's make it a year."  A YEAR!  Wow!  

Weird and interesting:  Jeff has had eye pain for about a month.  It went away for a while but came back and was concerning him.  Off to the ophthalmologist.  He learned that his eyeballs are swollen.  Yes, swollen eyeballs.  The doctor said, “Your body just does this sometimes.”  The quick and easy cure is Ibuprofen but Jeff’s kidney specialist will not allow him to take that.  Instead, eye drops should take care of it in a couple of days.

Our friend Michael from Gilda’s Club is a candidate for Leukemia and Lymphoma Society’s Man of the Year.  We have been saving up our donation dollars to give to Michael during the campaign period, now underway.  A Beer & Whiskey Kick-Off event was held on Saturday night and we had a lot of fun seeing friends from Gilda’s and friends of Michael’s whom we’d met at past fundraisers.   We even came home with a couple of baskets of goodies that we won at the silent auction.  Michael and his wife, Monique, are awesome representatives for L&LS and their commitment to funding research which may someday help Michael is impressive.  Jeff commented that sometimes it seems our social life is centered around cancer friends and events.  We’ve met some really nice folks this way.  

Also on our social calendar was a visit with old family friends - five siblings and their spouses and four of the Claus siblings and our spouses.  It was great to see everyone, reminisce about old times, and eat good food.  We shared Jeff’s good news from the oncologist – “Come back in a year”.  One of our friends had lost her husband to leukemia and we were reminded that the disease is not easily conquered.   We are always and forever grateful for donors like Nicole and Niece Amy Lyn, for Dr. Porter and all those who dedicate their lives to helping blood cancer patients have a better chance at survival.  We pray for a cure for all blood cancers one day.

Another Life Saved!

Niece Amy Lyn texted me on the anniversary of her bone marrow donation.  I had been thinking about her and her recipient and wondered, like Amy Lyn, whether we would ever learn the identity of the young girl.  We were pretty sure that she survived her transplant because the transplant center would notify Amy if she hadn’t – and only if she hadn’t.  No news is good news.

Amy seemed a little nervous and hopeful as she began the process of granting permission to share her contact information.  Within a short time (especially compared to our almost 2-year wait) she had an email from Ashley, the mother of her recipient, 13-year-old Lesley.  Amy shared that first email with me because she knows that we are enjoying seeing the process from the donor side.  Ashley says that she and Lesley prayed for Amy, just as we prayed for Nicole before we knew her name.  And she reports that "Lesley made it."  We're so glad!  

We remembered those first contacts with Jeff’s donor, Nicole.  It really is very exciting.  The gift of life can now be acknowledged without a go-between although you don’t feel that you can ever adequately express the gratitude you feel.  Nicole tells us that Jeff’s health – and him living his life - is thanks enough.

Granddaughter Penny likes to list everyone’s injuries, including her own bumps and bruises.  “Remember when I fell down your steps…  Remember when you fell and broke your nose…  Remember when Grandpop’s foot was hurt…”   Perhaps she is a future medical professional.  I wonder what she will make of Grandpop’s blood being produced by Nicole’s marrow.  Her current medical knowledge is in the range of what cartoon character Doc McStuffins could explain using dolls and stuffed animals.  The little book Jeff and I wrote for Nicole’s children, The Butterfly and the Carpenter Bee, is useful to show that a far-away stranger can save a life.  Bone marrow transplant is a miracle.  We look forward to helping Penny and her sisters understand more about that most precious gift of life.

Jeff’s latest labs were good.  I like to tell him, “Your BUN looks good, hon.” That is what the kidney specialist tells him (She doesn’t call him “hon”, of course.).  He sees a lot of doctors but no big challenges have arisen recently.  All good.