Bushwhacking and Other Firsts

LuAnn Cahn, a former local newscaster and two-time cancer survivor, was the inspirational speaker at a survivor’s event we attended last month.  She spoke about her experience of trying something new every day for a year to shake herself out of a funk.  We are having fun brainstorming potential Firsts and have started keeping a list of Firsts we have tried - including driving down the very narrow first block of Daughter Kim’s street heretofore believed to be off-limits to cars.  We had a lot of laughs and felt very, very bold.  LuAnn is on to something!

Unlike LuAnn, however, we are haphazard about our Firsts.  Thinking of something new to try every day would be far too stressful.  Some things on our To Do List are:  see a kid’s movie without the kids, have a crepe breakfast in Princeton, visit a trampoline park (okay – that one is mine alone) and take a Segway tour in good ol’ Philadelphia.

Inadvertent and unwanted firsts have cropped up, too.  For example, Jeff had a couple of issues that required reporting to his oncologist and dermatologist.  Two appointments that were scheduled for early 2016 were moved up to December – a day apart.  A very large polyp was removed from Jeff’s colon which the gastroenterologist said would have “almost certainly become cancerous.”  This means we are now waiting for the results of a biopsy (we’re not too concerned since the doctor was not).  And – Oh Joy! - Jeff will need annual colonoscopies!

On Friday, barely 24 hours after being under the influence of anesthesia, Jeff took a one-hour drive to the Radnor office of Penn Dermatology.  This was a First; he’s only ever seen Dr. Samimi in Center City Philadelphia but she wanted to see him and she was in Radnor.  A hard, new growth on his forehead, at the hairline, was frozen off.  This visit won’t replace his six-month check-up, however.  It seems April is turning out to be the next “Doctor Month.”

Polyps and skin lesions are both fairly common issues and yet we wonder to what degree the harsh pre-BMT treatments caused or sped up these growths.  We’ll never know, of course.  The diligence required feels a little like whacking back the wild – bushwhacking! 

Jeff and I check on each other frequently.  I’m not sure how he could tell I was feeling anxious last week.  He asked, “Are you worried about me?”  I was kind of worried but it passes.

A milestone – a First of sorts – was commemorating five years since diagnosis (October).  Another will be celebrating five years since transplant (in May).  Jeff has come far and he has many more Firsts ahead of him. 

Eyes for You and Wonky Legs

As only true romantics can do, Jeff and I had a hot date at the ophthalmologist’s office after work on Monday night.  It was the last of the exams Jeff needed to take care of – for now – and we wanted to make it fun.  The office staff cooperated by putting us both in the same exam room and we each had a turn in the chair before getting our dilating eye drops.  We were giddy with togetherness – and maybe hunger, too.

Then Dr. Hirsch saw each of us separately.  Jeff wanted to discuss his ocular migraines and a floater/insect thingy that seems to pulse with his heartbeat.  He learned what symptoms to watch for that would indicate a more serious issue or escalation of the problem.  Neither of these annoyances concerned Dr. Hirsch.

He did, however, ask Jeff, “Were you on steroids for a long time?”

Jeff said, “Oh, yeah!”

“Well, you have cataracts.”

Dr. Hirsch told me that I need distance glasses for driving (I hadn’t noticed) and asked me to return in 18 months.  He added that he’d need to see Jeff sooner, in six months.

I met Jeff at the checkout desk.  He had already paid my co-pay.  What a sweetheart! 

The romance continued the next day as we celebrated our 36^th wedding anniversary.  I got home from work to find our dining room table set with china and candles and roses and wine – and dinner nearly ready.  It was a lovely weeknight surprise! 

Leg cramps continue to plague Jeff.  On the worst nights he wakes up six or seven times.  Sometimes his muscles are sore the next day.  One night both legs and his buttocks cramped at the same time so that he had trouble standing upright when he leapt out of bed.  Recently, he began having cramps in the daytime, too - while driving!

In an effort to minimize cramping, Jeff takes calcium and magnesium supplements and occasionally uses a muscle relaxer at bedtime.  I think he needs to eat more bananas, too.  In September, his magnesium level was checked and Nurse Heather advised adding another magnesium pill to his regimen.  Our support group friends have suggested several remedies which Jeff has tried: wearing warm pajamas, drinking tonic water (for the quinine), tomato juice, and pickle juice.  Pickle juice! That’s how desperate he is to find a solution!

We’re regulars at a Thai/Chinese restaurant near the mall and on our recent visit we were given a good-luck calendar for 2016.  Along with our bill were two fortune cookies.  Jeff’s read, “Many people will do nice things for you.” 

Jeff said, “I hope that doesn’t mean I’m going to get sick again.”  He is doing well, feels well, looks great, jokes regularly.  Still, a niggling dread of relapse lurks nearby sometimes.

Done with Doctor Month

Son Kerry happened to be at the Philadelphia airport in time to see the pope board his plane Sunday night.  For the city of Philadelphia hosting the pope was, perhaps, like having cousins visit - glad to see him come, glad to see him go.  Daughter Kim and Niece Melissa and her husband, Josh, posted pictures they will probably never have the opportunity to get again – city streets with no cars!  We heard tales from faithful folks who were lucky enough to get at least a glimpse of the man. 

HUP did not schedule appointments for “Pope Friday” or “Pope Monday” fearing it would be difficult for patients to get in and out of the city.  Jeff had the first post-pope appointment – 8 a.m. Tuesday morning.  As we entered Exam Room 22, the nurse tsk-tsked, shook her head and yanked the paper on the exam table to roll out a clean section. Some of the hospital staff stayed overnight during the pope’s visit.  I don’t imagine an exam table is a very good substitute for a bed.

Jeff told Nurse Heather about the death of our blood-cancer-support-group friend, Steve, who had gladly participated in HUP’s CAR-T immunotherapy trial.  I commented that it is probably typical for cancer patients to find purpose in such contributions, even if they don’t benefit themselves long-term.  Nurse Heather tipped her head and sadly related that some patients are angry, some don’t want to be “guinea pigs” and some don’t want to lose their hair.  What a challenge for a hematology oncologist!  Her perspective makes Steve’s contribution seem all the more generous.

In the realm of Too Much Information but must be mentioned if we want honesty in this journey, Jeff shocked Nurse Heather with a description of his foamy urine which requires two flushes – odd, but not a new development.  We actually aren’t sure when this began but it has been months or years, maybe – sometime since BMT.  Heather didn’t know what to make of it and Dr. Porter didn’t address it.  The blood labs include kidney and liver function measures - all is good there.  We’ll mention it to the family doctor and leave it at that.

Dr. Porter decided to keep Jeff’s dosage of Cellcept at one pill, every other day.  Jeff assured Dr. Porter that it was alright with him if he needs to continue the immunosuppressant indefinitely.  Since all is well, Jeff’s next visit will be in four months instead of three!  And that doesn’t seem as scary as it once would have.

This appointment closes out September “Doctor Month” during which the dermatologist froze off another suspicious spot, the vein specialist prescribed shorter (knee-high) compression stockings, the urologist monitored minor ongoing issues and the dentist filled a small cavity.  Strung together, this sounds like the litany of an old person, not a 56-year old.  Yet to come, eye doctor (ocular migraines continue and new glasses might be in order).

Accomplished by Jeff in the last month:  removed an overgrown evergreen tree and an old holly tree from the backyard, finished a potting table on our shed, took on a helper for the short-term (a young friend who worked with Jeff in the summers during his high school and college years and who complements Jeff’s work style very well), and nearly finished bathroom renovations at our church.  Plus, of course, he watched the girls two days a week. 

Jeff and I said “Good-bye” to our dear dog, Giblet, after 15 years of companionship.  The loss was especially difficult for Jeff who appreciated her company during his long recovery.  She was an affectionate dog and we will both miss her very much. 

A Purple Pair and Simultaneous Sleeping

“I’m wearing purple.  Will you wear purple, too?” 

I peeked from inside my closet to see that Jeff had pulled on his purple polo.  The sparkle in his eye was playful but, my goodness, he was serious, too!  He wanted us to match!  There was a time when our accidental color-matching brought forth a groan from Jeff and sometimes an outfit change.  I couldn’t help wondering what this new development was all about.  In fact, I am still left wondering. 

This summer Dr. Porter dropped Jeff’s dosage of Cellcept to one pill every other day.  After one month of this regimen, blood work showed good levels and the irritating cough that is associated with Cellcept stopped.  Dr. Porter is still hopeful that Jeff will be able to wean completely off the immunosuppressant.  We’ll see what he says at Jeff’s next visit later this month.  Thankfully, it is scheduled for the day after the pope leaves Philadelphia so our travels in and out of the city should be normal.

Jeff’s plan to pack several of his doctor appointments in September seemed like a good idea until September 1^st arrived.  He greeted the day with a moan but he has very little to complain about beyond having so many check-ups.  All is good.

Daughter Kim was captain of our family’s bowling team for The Dude Hates Cancer fundraiser for the Leukemia and Lymphoma Society.  As Pop would say, “Fun was had by all.”  None of us won any trophies but we did help raise money for the important research that L&LS funds.  Jeff remembered not being able to bowl very well three years ago because he was having issues with his shoulder and still hadn’t regained his strength.  Although we probably hadn’t bowled since then, Jeff’s old form returned and it was evident that his strength has improved considerably, too.

All summer Jeff spent two days a week with Daughter-in-law Theresa and our two little granddaughters, two-year-old Rosie and brand new Penny.  Theresa recently returned to work after her maternity leave and is impressed with Jeff’s prowess at getting both girls to nap simultaneously!  Jeff says his motivation to succeed is high because he wants to nap as well.

Please pray for Steve and Robyn as Steve is left with only one more treatment option for lymphoma and Robyn is preparing to care for him at home. 

Our First Gift of Lift Drive Yields a Match!

We got the most exciting news from Gift of Life today by email:

“Dear Gift of Life Volunteer,
On Jun 14, 2014 you helped facilitate a donor drive in Hamilton at NJ YMCA Staff Training Day Drive. We are thrilled to inform you that a donor recruited at that drive has been identified as a match for a 65 year old woman battling Acute Myelogenous Leukemia.” 

Jeff remembers giving a rousing short speech to the crowd and then walking around with Rosie in his arms, telling his story to the young camp counselors and encouraging them to swab their cheeks.  Theresa helped us that day along with Donor Frank and Gift of Life Staffer, Nick.  More about that day:

http://jeffs-journey.blogspot.com/2014_06_01_archive.html 

Jeff is proud that we had a success only one year after our very first drive and I'm shedding a few tears whenever I think about the families who are preparing for donation and transplant.  We're thinking, of course, about Nicole, too.  We're feeling blessed to be a part of the Gift of Life process.