Let’s Play The Waiting Game!

While waiting to hear more about Jeff’s tests, we received a very nice letter from Gift of Life announcing that a swab drive we ran in 2014 recently produced a match for a 62-year-old man with leukemia!  This was exciting news!  We also heard from Barby Pilpel from Gift of Life to let us know she is thinking of us and sending virtual hugs.

We’re getting a lot of virtual hugs and prayers from our friends and family.  They, like us, are ready to hear something.  We’ve heard that Dr. Porter’s office is working on setting up an appointment (double or triple booked because Jeff is supposed to be seen within two weeks of the bone marrow biopsy).  And we saw that results for two tests were posted on the Penn Medicine portal. 

The chimerism test shows that 74% of Jeff’s blood is produced by Nicole’s marrow instead of the 100% that he enjoyed for 9.5 years.  And he is negative for both of the FLT3 mutations for which targeted therapy is available.  Of course, this knowledge leaves us wanting more. 

We attended the Leukemia & Lymphoma Society’s National Virtual Blood Cancer Conference today to get ourselves back in the game – learning about new therapies for blood cancers and new studies on AML.  Jeff fell asleep and missed the discussions on sex during treatment and managing fatigue.  Oh, well.  The sessions were helpful to me.

One screen shared at the conference showed the impact the many new treatments have had on blood cancers and survivorship.  At the bottom of the list were MDS - “minimal impact”, and AML - “no impact”.  Geez.  L&LS is trying to Beat AML so there are many clinical trials going on which do not exclude people with low blood counts as had been the case in the past. Fingers crossed.

The Waiting Game consists of creating questions for which we do not have answers.  Jeff’s questions included:

1. If I have another bone marrow transplant can I make sure that it is done on a different date than my birthday or transplant anniversary so that I can have three birthdays?
2. Can I get chicken pox three times?
3. Since Amy can’t come to the hospital and take my dirty laundry away, do I have to wear only hospital gowns?

Amy’s questions included:

1. Is the new azacitidine tablet approved on September 1^st, an option for Jeff?  (Remember the belly-burning injections of Vidaza?)
2. Can his treatment be done without the use of Daunorubicin (the likely culprit in his kidney issues)?
3. Which will be recommended for Jeff, traditional therapies similar to what he’d had before or might there be a suitable clinical trial?  

Thank you to all who are playing – and praying - The Waiting Game with us. Ain’t it fun?

Disappointed and Deliberately Vague

 Jeff belted out “There Ain’t Nothing Like a Dame” as we traveled I95 on the way to his hematology oncology appointment at Penn.  I’d put the South Pacific CD in the car for this trip, thinking he’d enjoy listening to songs from his favorite musical.  He dropped his voice for “There is… absolutely… nothing… like the frame… of a dame.”  I wish I had taken a video of the performance!  We both sang and laughed at the silly lyrics – a perfect diversion for what may have been an anxious 45-minute ride.  Less COVID risk in our own car than on public transportation.  Plus, we would not have been singing “I’m as Corny as Kansas in August” on the train.

It was my first look at the Perlman Center in a few years and it looked the same to me.  However, just as my sister warned us, the elevators could hold only four people at a time, and those were not, technically, sufficiently socially-distanced.  Still, it was undoubtably safer than the normal sardine-style capacity.  We reached the West Wing, 4^th Floor where Jeff had labs drawn – three vials – then sat and waited.  Vitals taken, then sat and waited.  Once in the exam room we expected to see Nurse Heather first.  It was usual for her to ask Jeff questions, take notes, then update Dr. Porter who would come in later.  However, it was Dr. Porter who came in!  Jeff told him it was nice to see him and asked, “Are you disappointed?”

“Very disappointed,” Dr. Porter replied. 

Dr. Porter’s appearance threw us a little and we forgot to call Daughter Kim until several minutes in.  I had her phone number ready to dial, though, and quickly called.  Dr. Porter backed up a bit to bring her up to speed.  We could hear Kim typing, taking helpful notes. 

“It’s never good when leukemia relapses after this many years but there are options that would not be available to patients who relapse after only two years,” Dr. Porter explained.  It is rare for a patient to survive this long – 9.5 years post BMT – and then relapse.  He said he was going to be “deliberately vague” because we just don’t have all the information he needs yet.  He ordered more blood work – three more vials were drawn before we left the office – and a bone marrow biopsy set for tomorrow.  Jeff will have to go alone for the biopsy, no companion pass this time.  Today’s blood work shows Jeff’s blasts are at 15% (not as terrible as when first diagnosed in 2010), his platelets dropped another 20,000 (“not yet dangerously low”) and his hemoglobin dropped a little, to 11.8.

Some options discussed tentatively, pending test results which may identify the source of the MDS/leukemia, include:

• 1.     Vidaza as before with the goal of lowering the blasts.  Maybe via infusion instead of those tummy-burning injections – slower to infuse but maybe less painful. There is a drug that was not available in 2010 which is given with Vidaza to make it work better but has more side effects.  (Vidaza was not particularly successful the last time around so a drug to boost its efficacy seems like a pretty good idea.)
• 2.     DLI – Donor Lymphocyte Infusion.  Donor Nicole’s cells may have reacted against cancer cells so injections of her lymphocytes could help.  Nicole has already graciously and amazingly offered whatever is needed. 
• 3.     Another transplant.  Although Dr. Porter told us 10 years ago that you don’t go into bone marrow transplantation expecting to do it again, he says it is “on the table”.    

Dr. Porter concluded that Jeff is medically fine right now, it isn’t a life-threatening emergency.  To Jeff’s question, “Should I be working?”:  he expects Jeff will have enough going on in the coming weeks and, with anemia and low platelets, it would not be good if he was hurt on the job.  He suggests slowing down.

As we left the office, Jeff kept asking me if I was disappointed.  I wondered, about what?  That we still don’t know what the treatment will be?  That he is sick again?  I gave what I hoped were reassuring answers but he asked again in the car on the way home.  Realizing he was probably trying to express his own disappointment I asked, “What are you most disappointed about?”

He sighed, “All the doctor visits I’m going to have.”

Really?  I can’t imagine facing Vidaza again or the prep for and recovery from bone marrow transplant.  He is focused on the next steps, those pesky tests and doctor visits.  And maybe that is as it should be.  I am amazed at how brave he is.  Disappointed, yes, but brave and willing to do it all again!

Love and Cancer in the Time of Coronavirus

We’d been dealing with the pandemic just fine.  After all, we knew how to quarantine.  This is less challenging than Jeff’s 100 days of isolation when we cooked everything he ate, never ate out, cleaned daily, sanitized all surfaces.  Now when we go for walks, we both wear masks.  This pandemic thing is a piece of cake.

Early on Jeff dug out a full case of 120 N-95 masks from a shelf in his shop.  He dusted the box off and our son Keith took it to St. Mary’s Medical Center where it was received with amazed gratitude.  Jeff worked on projects at church because he could be there alone.  He finished a kitchen job he’d started BC (Before Coronavirus) and then completed projects around the house and worked some here and there. 

Each week of quarantine seemed to have a theme shared instinctively by family and friends.  Clean out closets week, puzzle week(s), bake-bread week, call friends week, freak-out week (Week 6).  During the yellow (second) phase of reopening we began to see the grandchildren again and Jeff resumed his Monday and Friday Grandpop Days.  I was working at home, Jeff was keeping busy, we were faring just fine.

Jeff’s hematology oncology appointment set for March – his first ever annual appointment - was postponed to May.  It was done via BlueJeans Videoconferencing, no travel to the city required.  I popped into camera range to say ‘hello’ to Dr. Porter.  Jeff said he couldn’t believe it had been over a year since they’d last seen each other and that he missed their more regular visits (as if they were social occasions!).  Since Jeff’s blood counts were all within normal range, Dr. Porter said, “See you next year.”

As the summer progressed, though, Jeff was napping even more than usual and feeling “not quite right”.  He realized he was overdue for a physical so he made appointments for labs and a visit with his Primary Care doc, Dr. Li.  After his lab work was done, Dr. Li’s office called to ask if Jeff could come in sooner than scheduled, the next day.  Jeff figured Dr. Li wanted to make a golf date for the day of the original appointment (cynic!).  I thought if that was the case, the appointment would be pushed out, not moved forward.  Ugh.

Unfortunately, Dr. Li believes Jeff is having a relapse of AML and needs to return to Dr. Porter.  Jeff’s red and white blood cells and platelets are below normal range.  Jeff shared this news with obvious disappointment but, as always, he was upbeat and finding humor where he could.  “I told Dr. Porter I missed him…”  Another family member has an unfortunate cancer diagnosis, too, and Jeff said he didn’t want her to “have all the fun”.

Dr. Porter’s nurse, Heather, called the next day.  Dr. Porter is away this week but will see Jeff on September 1st.  It will be an in-person visit with blood labs taken upon arrival which will give more information about what is going on (which mutation?) and guide next steps (targeted therapy?).  Penn issued a special pass for me to accompany Jeff to this visit.

Our family can’t help wondering what this go-round – in the time of coronavirus - will entail.  For me, I hope that some drug, perhaps one fast-tracked by the Moonshot Initiative, can be given in pill form at home and thus avoid having to go to the hospital for treatments.  Kim offered to attend the doctor's appointment virtually and she may provide a hang-out place if I have to drop her dad off for appointments and then stay away until he is finished.  Keith has offered to take his dad for infusion treatments, if they become necessary, since we won’t be able to recruit lots of family and friends to help as we did in 2011.  Kerry and Theresa discussed how Grandpop Days with the girls may be able to continue throughout treatment because at least one of them will be working from home to see to the girls’ virtual school lessons anyway and Grandpop, if he feels well enough, can take the 3-year-old into another room.  My sister wonders whether Jeff’s doctors will recommend he quarantine because his white blood count is low.  And for all his joking, I think Jeff is concerned about treatment side effects.

It is possible that his blood counts are continuing to drop or perhaps knowing he isn’t well is making him feel less healthy.  He is fatigued but, as in the past, there is no pain. Waiting is hard but not so hard as the first time around. 

A Party, a Fun Find, the Certainty of Taxes, and Where are they Now?

Jeff climbed into bed and clicked on the TV for his usual few minutes of distraction before clicking it off and falling - infuriatingly – instantly to sleep.  He never has any trouble leaving the cares of the day behind AND he can drink caffeine at any time of day without it affecting his ability to fall asleep at will.  He knows not to watch even a few minutes of a high-action show with edgy music because that will set back my bedtime routine, sometimes irreparably.  On this night he chose something silly, a show that I was not familiar with. 

“What do you have on?” I asked.

Jeff stilled for a moment.  Finally, “My pajamas?”

I laughed and clarified my question, “On TV.”

Now he can get me to laugh anytime with the question, “Want to know what I have on?”

In November we reached our Ruby (40^th) Wedding Anniversary.  Our children asked (we may have given hints or even outright asked) if they could throw us a party to commemorate the occasion.  Jeff wondered whether 40 years was an unusual anniversary for a party and I told him not to worry – we’ll plan on having another one for our 50^th.  It was fun to see our long-time friends and family together with our newer friends (some we met through Cancer Support Community - Gilda’s Club) in the same room enjoying themselves.

  

The New Year was inspiration enough for a basement cleaning.  We found a stash of get-well cards from the time Jeff was diagnosed and in treatment for blood cancer and recovering from bone marrow transplant.  We decided to look through them one more time before recycling them.  Several nights at dinnertime we read a few of the messages and well wishes and remembered the kind things people did for Jeff and our family during that time.  We noticed that some folks sent several cards over the year and half or so that Jeff needed care and prayers.  And we noticed that we’d heard from people in all of our circles – family, friends, neighbors, church, work, scouts, our children’s friends…  We basked again in the love shown to us.

That same week I had another reminder – a little weird, maybe - of the time that has passed since Jeff’s illness.  I keep eight red IKEA boxes to store eight years’ worth of tax records for Jeff’s business.  At the end of each year the contents of the oldest box are shredded and the box is re-labeled for the current tax year.  Jeff and I took turns at the shredder – I with sinister delight - watching as the financial evidence of Transplant Year were destroyed. 

Barby from Gift of Life asked Jeff if he would participate in the “Where are they now?” series for bone marrow recipients and donors.  He responded with a hearty “YES!”  We are pretty sure Jeff’s donor, Nicole, would be equally willing.  We don’t know yet what this will entail but we are eager to see what Gift of Life has in mind.  They do a really good job of promoting bone marrow donation and take very good care of their donors and recipients.  And, of course, they gave Jeff the Gift of Life.

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.

Come Back in Six Months

“What did the doctor say about your foot?" I asked.

“I didn’t ask him about my foot.”

“Why not!  It has really been bothering you!”  

“I was at the eye doctor’s,” Jeff reminded me.
 
We had a good laugh about that.  My confusion was an indication of the number of doctor visits and procedures he had this summer: eyes, each foot on different days, each leg on different days with follow-up visits for each, kidneys, teeth, skin…  Jeff was especially eager to have his legs and feet fixed so he could enjoy our trip to Germany.  Which he did!

Some people visit Germany for Oktoberfest and journal the beers they consume - either quantity or variety.  Jeff did neither.  As Brother-in-law Mark phrases it, Jeff “licked” his way through Germany trying different flavors of eis (gelato).  In 16 days of touring, Jeff tried 20 different flavors.  Yes, that means he averaged more than one cone per day.  We had a wonderful time enjoying beautiful scenery, great food, good company, and each other. 

At one time - not so very long ago - the words “Come back in six months” would have seemed like a scary, daring experiment.  After eight years of regular oncology visits stretching no longer than four months in-between, Jeff was comfortable with Dr. Porter’s pronouncement.  He told Dr. Porter and Nurse Heather, “I’m going to miss you.”  He knows – and I do, too – six months is alright!