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!

Golden Cracks and the Seven Year Mark

There are some things in life that should be celebrated when our tendency is to complain.  For example, a crying baby in church is a good thing.

When a piece of new furniture is dinged or scratched, no worries.  Its patina has begun to hold the story of its owners.  Jeff built bunk beds and a chest of drawers for Son Kerry when he was about six years old.  It has held memories of Kerry and his three best friends from the day they got it in their heads to scratch their names in the brand-new bed.  We might have gotten angry at the time but we decided it was pretty funny.  Those boys are never to be forgotten.

Friend Jennifer has taught us this lemons-to-lemonade lesson in a few ways.  Where others might grouse and complain to the bakery if a name is misspelled on a cake (“Kenny” for “Kerry” or “Just put Jenny”…), Jennifer laughs and adds it to her list of funny mishaps.  Her family also celebrates their lack of musical abilities at every birthday party by singing in ridiculous pretend-opera voices at high level and with great emotion.

Our pastor recently mentioned the centuries-old Japanese art form Kintsugi  in a sermon.  When a ceramic piece is cracked, the crack is filled with lacquer and dusted with gold.  The crack is not masked at all but is accentuated, celebrating the history of the piece.  As Pastor Lisa spoke about beautiful imperfection and golden cracks, my thoughts went beyond our spiritual flaws and on to physical ones as well:  broken bodies and the golden crack-fillers who donate their bone marrow.  

According to this website https://mymodernmet.com/kintsugi-kintsukuroi/, the Japanese philosophies behind Kintsugi are wabi-sabi (seeing beauty in the imperfect), mottainai (regret for something wasted) and mushin (acceptance of change).  These philosophies brought to mind our family’s cancer journey, the unexpected joys that we have experienced as a result of Jeff’s flawed chromosomes, the extreme measures taken by medical professionals to prevent wasting a life, and the acceptance that life will never be the same.  I thought, too, of how I once only pitied people who were bald from chemo and how I have come to see them as beautiful – perhaps temporarily weak with cracks but strong, too, beautiful in their ability to endure the indignities of treatment.

Jeff’s “gold” runs through his veins and is, perhaps, not visible to all but lovely just the same, being made continuously by marrow donated by the lovely Nicole.  The list of golden crack-fillers who touch our circle of family and friends is expanding.  Niece Amy Lyn told us that one of her coworkers who’d registered with Be the Match got a call that he is a potential match!  And at the Be the Match Walk/Run in April we saw my coworker, Sophia, whose daughter donated marrow on the same day that Amy Lyn donated!

It has been awhile since we blogged, so here is an update on Jeff’s health:

Jeff marked the 7th anniversary of his bone marrow transplant on May 27th.  His hematology oncologist and kidney doc are both very happy and so, then, are we.
 
The dermatologist froze spots on his face and arm and biopsied a spot on his leg.  We are awaiting results without too much concern about it.

A varicose vein in his right leg was sealed off – a procedure done by the vein specialist while an ultrasound technician acted as back-seat driver, “Go left…  go around the bend…”   The left leg will be done in August.  With luck, this will alleviate some of the leg cramps that regularly interrupt Jeff’s sleep (and occasionally mine, too, when he inhales quickly and leaps to his feet).

Jeff teased that I would have to return to an active role as caregiver for the weekend following the vein procedure.  I was happy to perform the role, especially since this time it was light duty and because he asked with his usual charm and wit.  We continue to draw on the lessons we learned from Jeff’s cancer experience as we face other of life’s challenges.  Keep at it and keep on laughing!

Healthiest Guy on the Floor

By now Niece Amy Lyn’s marrow is making blood for her recipient.  We don’t know who she is or where she lives but we hope her family is watching her recover and that they can see the potential for a healthy future for their little girl.

Amy Lyn has recently learned that the rules around donor/recipient communication have changed.  She will not get updates on her recipient and will only hear something if her recipient does not survive.  No news is good news.  She may still request to have her contact information shared with her recipient on the one-year anniversary of the donation/transplant.  She will learn the identity of her recipient only if both parties want to make contact.

We like the Nicole-Jeff-Amy Lyn story and so does Dr. Porter.  He told Jeff he was going to tell someone about it and to expect a call.  Intriguing! 

This week at Jeff’s oncology check-up at Penn’s Perelman Center, his blood work was all good!  He had the second highest hemoglobin level since his transplant.  In fact, Dr. Porter said that Jeff was “by far the healthiest person on this floor today”.  This was after three months off of the immunosuppressant.  You may recall that Jeff and I had our doubts that it could be done and that Dr. Porter was persistent in his attempts to wean Jeff off completely.  Wow.  Dr. Porter wants to see Jeff in three months and that’s okay.  There is less worry when we know he is monitored regularly.

Other good news:  On a trip to Florida, our friend Kathy – host to a regular stream of visiting friends – was unable to remember the sites she showed us when we visited last year.  I mentioned a couple of places but Jeff began to recite everything – everything! – we did last year, including the restaurants!  It seems his faulty memory for places applies only to those we visited before his transplant.

Jeff and I have had a couple of good conversations lately.  Don’t judge; one of them was If-you-die-before-me.  The conversation was prompted by a request for Jeff’s help by the Living with Loss group at Gilda’s Club.  The women want to know what things they need to regularly check in their homes and they are hoping he can teach them some simple repairs.  They’d made a list which Gilda’s Director Beth shared with Jeff after yoga.  We saw the women filing out of their meeting as we were leaving yoga and I thought, “There but for the grace of God…”  Jeff, too, thought about surviving his spouse and wondered…

In the car on the way home we wondered about this together.  I have no sense at all that Jeff will precede me in death – an interesting realization.  I no longer rehearse in my head how I would handle situations without Jeff around to help.  (When did that change?)  Each of us speculated whether we would become more introverted or more extroverted as the surviving spouse.  We came to no conclusions and did not spend a lot of time on the question.

Another topic of conversation was the fear of recurrence of disease and how that has changed for each of us.  Jeff confessed his fear of a secondary cancer – most recently, if he hiccups!  Instead of thinking How-annoying-are-these-hiccups, he thinks I-wonder-if-I-have-stomach-cancer!  I, on the other hand, feel more and more as if we can expect his survival to be very long-term.  During treatment, transplant and recovery, Jeff seldom worried yet now he thinks, “What next?”   A bit of role reversal, it seems.  This fits with our marriage/parenting philosophy:  we can withstand anything in our marriage, anything as parents so long as we don’t freak-out simultaneously.

Jeff gets by with fewer naps these days due to a busy work schedule and his two days a week with our adorable granddaughters.  He does, however, go to bed early and sleeps soundly.  He is tolerating his many visits to doctors without too much grumbling – perhaps made easier by good reports (even his pee is purported to be “cleaner” than his doctor’s).  There are a couple of upcoming treatments for relatively minor issues and he seems to be accepting those like a “professional patient” should.

We are grateful and hopeful and always, always marveling at the miracle of bone marrow transplantation.

The Best Christmas Present Ever

Donor Amy Lyn (in festive sweater) with her fiance Rylan, her Uncle Jeff (6-year BMT survivor) and her mother, Judy

Niece Amy Lyn describes the opportunity to donate bone marrow as “the best Christmas present ever!”  It certainly is the best gift that is humanly possible to give.  Many of us on the donor side are praying for a little girl we’ve never met but who will, hopefully, have our familial blood flowing through her veins within a month - when Amy’s marrow begins producing blood in the little girl’s body. 

Leading up to donation day, we prayed Amy would stay healthy and safe, just as we prayed for Jeff’s donor leading up to his bone marrow transplant.  We know that on the recipient side there is a fair amount of anxiety that something will prevent the transplant from happening.  Amy did what she could to stay healthy, working from home as much as possible and taking vitamins.

On the eve of Amy’s donation, Uncle Jeff texted her, “Have a marrow nice day tomorrow!”  And the Nurse Coordinator texted her to say that the patient was ready to receive her marrow and was “at the point of no return”.  The reminder that the situation was dire made Amy nervous, “Just wrap me in bubble wrap!”

The collection center was in Philadelphia and Amy was accompanied there by her mother (my sister Judy) and her fiancé, Rylan.  They were treated like VIPs at the hospital - beginning with the parking valet who knew what Amy was there to do and continuing with Amy’s nurse and the team who harvested her marrow.

Judy noticed that Amy relaxed once she was at the hospital being prepped.  Marrow donors need family support and, no matter how willingly given, it doesn’t come without a bit of anxiety.  The mother of Jeff’s donor told me she was very nervous about Nicole’s donation because she’d given birth less than a year before.  Yet she supported Nicole’s decision to donate bone marrow to a man she had never met.

During Amy’s procedure, Judy and Rylan sat in a waiting room together.  When the collection was finished, the entire team of about five doctors and nurses came to the waiting room to report that Amy was awake and doing well.  Rylan noticed one member of the team holding the precious cooler-full of marrow and asked, “Shouldn’t you be on a train or plane?”  The doctor said some other things, the team left, and Judy and Rylan realized neither one of them heard anything past “Amy is awake and doing well.”  Mr. G, a stranger who happened to be sitting nearby and not emotionally attached to the situation, heard everything the doctor said and was able to fill in the blanks for Judy and Rylan. 

If you are the squeamish sort, you may want to skip to the last paragraph.  We sometimes forget that “transplant talk” is not normal for most people.  It is still a relatively rare medical procedure and transplants using actual marrow – rather than stem cells – is rarer still (30% of bone marrow transplants).

During the three-hour procedure under anesthesia, Amy was infused with her own blood (drawn a couple of weeks ago for this purpose).  While in recovery, she had a reaction to the pain medication and vomited.  She was given anti-nausea and pain meds through her IV and was kept overnight at the hospital to monitor her blood counts and change her dressings in the morning.

Two liters of marrow were collected via six holes in her hips (130+ extractions - only small bits could be collected each time so as not to dilute the marrow, she was told).  Amy had no concept of what two liters of marrow looked like so I sent her a picture of Uncle Jeff’s (well, Nicole’s) two liters of marrow.  I told her how worried I was that the hole to hang it on the IV pole would stretch too far and break - even though Jeff’s nurse said that never happens.

The day after donation Amy was doing well but was bothered by numbness in her left hand which rendered it almost useless.  We speculated that her hand was pinched underneath her or hanging off the table.  Full use was restored within a couple of days.  I suggested Amy alert the doc so future donors could be positioned to prevent this from happening.  The Nurse Coordinator asked a lot of questions about her hand so Amy felt the issue would be addressed.  In addition to the follow-up phone call from the Nurse Coordinator, the anesthesiologist called to check on Amy.  They treated her like the VIP she is!

Nicole offered Amy this post-donation advice:  eat lots of iron-rich foods.  Nicole enjoyed a bloody steak the night of her donation because “the body knows what it needs”.  Amy was prescribed iron and folic acid for a month.  “Oh, that is smart!” Nicole says. 

On Christmas day (Day Zero plus 4) Amy looked tired, moved a little gingerly due to her sore hips, but she glowed!  (Hmmm, is that a halo?)  We’d texted a lot during the last few days and seeing her, hugging her, brought tears to my eyes.  Her family pampered her as warranted and maybe a bit more than was necessary.

Amy will get brief reports about her recipient’s recovery periodically.  She wrote to her recipient and hopes to hear something from her or her family although she understands that they may be overwhelmed right now.  Even if she doesn’t hear from them soon – or at all - I know they are thinking of Amy and are in total awe of her gift, the best Christmas present ever!  

Happy, Happy, Joy, Joy!

Big News:  Niece Amy Lyn swabbed with Be the Match Bone Marrow Registry when her Uncle Jeff was diagnosed seven years ago.  She requested a swab kit online and waited, like many other eager potential donors.  Unlike most on the registry who are never called, Amy Lyn is needed!  She is scheduled to donate marrow for a little girl with a blood cancer.  We are so proud of her and happy she can help another recipient family.  It brings tears to my eyes whenever I think of it.

It is fascinating to hear about the process from the donor side, in real time.  (Nicole has told us a lot about her experience but, of course, we didn’t meet her until a year and a half after Jeff’s transplant.)  After Amy Lyn completed an online health questionnaire, answered questions about Zika exposure, and completed screening blood work, she was told she would be notified within 60 days if she was selected.  A week later she learned she is The Golden One!  The donation is scheduled for December.  She will have a pint of her blood drawn in a couple of weeks to have on hand – in case she needs replenishing after her donation later in the month.  Amy Lyn is a nurse who is, oddly, squeamish about needles.  Uncle Jeff assures her, “You can get over that.”  Stay tuned for more on Amy Lyn’s adventures in marrow donation.

 

Jeff’s doctor visits have all been pretty good.  At hematology/oncology, his hemoglobin was 14.5.  This is well within the normal range and about as high as his gets.  Dr. Porter persistently tries to get Jeff off of the immunosuppressant.  I call it The Great Experiment That Always Fails.  Blood work within a month will tell whether he can safely stay off of Mycophenolate or if he will have to go back on it (at a higher dosage than he’d been taking). 

The vein specialist prescribed compression stockings for both of his legs - instead of just one - to be worn “always”.  So we’ll buy a few more.  (Do they come in pairs?)  January will be another “doctor month” or more accurately, “lab and doctor month”. 

   

Prayers are needed for Amy Lyn, her recipient and the recipient family.  May that little girl and her parents feel the love of all of the folks on the donor side who are hoping Amy Lyn’s marrow performs miracles.

A Visit with Blood Sister Nicole

Nicole and Jeff

Lucky us!  We were able to visit Jeff's donor, Nicole, in Georgia last week.  She is a great hostess and a wonderful mother.  It was like seeing an old friend - easy conversation and true affection.  We loved spending time with her and her family.  

We did a little sightseeing, saw Jeff's cousin Phil and his family, and knocked off a bucket list item.

Bucket List:  See the southern terminus of the Appalachian Trail.  Done!

Atlanta Botanical Gardens

Amy, Nicole, Jeff

Phil (Jeff's cousin) and Laurie joined us for hot dogs and marshmallows.

Campfire Fun

Drink More! And Other Fun on the Job

Jeff has been having fun as General Contractor for Friend Dan’s three-car garage project this summer.  He originally planned on doing more of the work himself than I thought was advisable for someone with low blood pressure who is taking an ACE inhibitor for kidney disease.  He gets dizzy sometimes and checks his blood pressure.  It is usually around 100/63.

“The roof!  You’re planning on doing the roof yourself?!”  I questioned on more than one occasion.  I was really concerned.  At first I was opposed to the project for fear of a catastrophe.  The previous four summers, Jeff took on projects that whipped him physically.  It wasn’t the size of these jobs that was the problem.   It was his body’s limitations – fatigue and loss of the strength he used to have – combined with the summer heat that made him come home red in the face and barely able to lift his feet off the ground.  A roof?  In the summer?

The subcontractors were guys he has not worked with before.  That alone could have been a source of stress - scheduling, getting materials to the jobsite on time, etc.  Working with these guys has been good for Jeff!  Mason Dan is a transplant survivor himself.  There was a nice camaraderie on the site.  Jeff learned the phrase, “I’ll buy, you fly!” (a.k.a. a coffee run).  Still that roof had me worried.

The garage grew to its full height and Jeff spent two days on top, cutting and stapling tar paper.  He came home red in the face and dragging his feet.  The next day he had blood drawn for the kidney specialist.

Usually Dr. Pat reviews the lab results during Jeff's office visit a couple of weeks after the blood draw.  This time Jeff heard from her within an hour.

“Start drinking!  You have to drink!”  the doctor scolded.  “Repeat labs next week.”

Jeff always believes he is drinking the prescribed amount of water but drinking enough water on a hot day is difficult.  It makes him feel sick. 

I checked the lab results online.  His condition now reads “Acute Kidney Failure”.  Yikes!  His BUN and creatinine were higher than when he first visited Dr. Pat!  Oh, no.  I asked Granddaughter Rosie to help remind Grandpop to drink - which she did very well. 

Realization hit Jeff: roofing is beyond his current physical capabilities.  Happily, he was able to make other arrangements for the roof installation.

I decided to go with Jeff to see Dr. Pat this week.  I had questions.  Dr. Pat showed me the lab results (she knows Jeff isn’t too concerned with the numbers) and although his BUN and creatinine were still among the highest measured they were improved.  And she was thrilled that there is no longer any protein present in his urine!  His uric acid was high and Dr. Pat accused Jeff of eating one of the forbidden foods in the 48 hours prior to his lab work.  Jeff gets mad at her for not believing his answer (“no”) while believing my answer (also “no”).

So, not only does he look bad after working hard on a hot day, it is hard on his kidneys.  My main question for Dr. Pat was, “Is it okay for Jeff to get on a ladder or a roof in the heat?”

Her answer:  “No, never.”

I asked what the biggest risk would be.  She said he could faint.

By next summer this conversation will have been forgotten and Jeff will probably schedule another outside job.  And it will be my job as caregiver to remind him what happened.

Jeff also saw Dr. Porter this week (also the dentist who finds Jeff in good dental health).  No change in medications although Dr. Porter still talks about weaning him completely off of the immunosuppressant - which has not been possible to date.  GVHD of the liver recurs if the dosage gets too low. 

  

If you are wondering about the lost necklace, I am happy to report that Jeff found it when he came home with a new hat and considered where he might keep it.  That led to him checking the basket of caps he keeps near the door and there it was!  The necklace has six strands of beads which Jeff claims he did not think about when he chose it to commemorate my six years as caregiver. 

Our social life flourishes.  We’ve been to a wedding (Interestingly, Jeff seems to count his survival by the number of weddings we’ve attended since his transplant.), we’ve have had three weekends away – one of those with all of three of our children and three grandchildren, biergarten, yoga, Granddaughter Rosie’s soccer games and more.  And Jeff went to Train Club this week – a rare thing these days.  Jeff continues his volunteer work at the church and watches our granddaughters twice a week.  Life is full - and lovely.

September is Blood Cancer Awareness Month.  Prayers, please, for patients and caregivers, health care professionals and researchers.  And because so many have hit in the last month, prayers also for those affected by hurricanes, earthquakes and other natural disasters.

Prince Charming's Dirty Laundry and Other Gifts

Jeff was out in the garage when he heard Neighbor Carmen yell for someone to help our 89-year-old Neighbor Anne Marie who had slipped and hurt her foot while getting out of her car.  Jeff ran across the street and, after discussing the best course of action, he scooped Anne Marie up and carried her into her house.  As he placed her on her sofa she told him that he made her “feel like Cinderella”!  Anne Marie iced her foot and was hobbling around okay later that evening.  

Our Prince Charming keeps running out of socks.  

“Do you need to buy more socks?” I ask.

“No.  I just need to do my laundry.”  

It seems we haven’t been home enough to catch up on our laundry.  I’d intended to wash the sheets last weekend and realized a week later that they were still not done.  (“Geez,” Jeff says, “you really are airing our dirty laundry.”)  Last week we took care of our slobbery granddog while her family was on vacation.  There is no hope of getting two wearings out of a pair of pants with Hidey around!  The pile of wash was almost as high as it was in the days when all three of our children lived at home.  We just couldn’t get ahead of it.  

Rather than worrying about making time for laundry, we celebrate the growing heap as an indication of our busy lives.  There’s yoga, biergarten with extended family every Friday night, Friend Kathy’s visit, Daughter Kim’s ComedySportz improv showcases and a “major league” show, a concert, a weekend away...  And we’ll be home for dinner only once this week!  Heaps upon heaps of fun.  Loads and loads of laundry which may have to wait.  Oh, well.

Our weekend away was to the home of Rochelle Ostroff-Weinberg in Margate, NJ, for the MDS Family Coping and Caring event.  Once again we met a nice group of folks who are dealing with MDS at various stages.  Most MDS patients are men but we met a woman who was recently diagnosed and facing a bone marrow transplant.  Both she and her husband had difficulty discussing her diagnosis and I believe that hearing about Jeff’s successful transplant may have done some good.

Another woman – a nurse - was there for support for her daughter-in-law, an MDS patient in the Czech Republic.  Her son had asked her to attend this gathering.  She felt that her daughter-in-law received wonderful care with her bone marrow transplant but was a little frustrated that the immunosuppressant available to her was not the same one Jeff and U.S. patients have access to - and is generally better tolerated.  She is learning how to be supportive from a distance and, when needed, flies there to take care of her grandchildren.

Rochelle told us that her husband, Bob, gave wonderful gifts of letters to her and their daughter and that these were delivered after his death.  Rochelle wanted us to think about the fact that one of us would predecease the other (Jeff turned to me and said, “I’m going to miss you.”) and what a gift it would be to have shared thoughts with each other in this way – with a shared journal.  She gave each couple a journal and asked us to take turns writing, watching as the other wrote.  I think she hadn’t figured on how difficult that would be for those of us (all of us!) with presbyopia.  It was difficult for a few other reasons as well:  my preference for a keyboard to write with, Jeff’s dyslexia, the roomful of others similarly engaged and chatting, the serious and tender subject matter.  But what a gift it will be if we purposefully hand-write what we mean to each other, adding to it from time to time, in my own/his own hand, with misspellings and stops and starts, and spots where someone’s tears provided the punctuation.  Thank you, Rochelle.

Jeff tells me that he purchased a gift for me a few months ago but cannot remember where he hid it.  He’d intended to give it to me on the 6-year anniversary of his bone marrow transplant and now hopes he can find it before my birthday this week.  He found the receipt.  He has cleaned out his closet and drawers and donated clothes, searched in our luggage (he isn’t sure why he looked there but just felt he should check), behind furniture, in cabinets.  He tells me that I can have the gift if I can find it.  Then he claims that I actually know where it is and am keeping it to myself so more of the house gets cleaned and sorted out.  He says he’ll get me another gift but I think my gift is the sweetness of the thought.  Truly, gifts abound.  

Keep Up the Good Work!

Last week marked the end of the longest stretch “ever” between oncology appointments – four months!  Jeff and I were both fairly relaxed about it considering there is comfort in more frequent labs and visits with Dr. Porter.

We’d received an email from Penn describing the new signage at the Perelman Center.  I reminded Jeff to take notice of it even though he knew where he was going.  However, when Jeff arrived on the 2nd floor he discovered that the hematology-oncology department had moved!  Maybe he wasn’t paying enough attention to the new signage.  He needed directions to find the new offices on the 4th floor.

This was big news which called for a few texts flying my direction.  I’d been off work for a couple of days for the Independence Day holiday and was having a very busy day.  I answered all of Jeff’s texts, though, because Jeff knows I wonder how he is faring, whether he’ll remember to ask Dr. Porter all our questions, if there are any changes.  Unfortunately, on this particular day, Youngest Son Keith drove himself from work to the doctor’s and then to the hospital with an acute case of colitis requiring IV and oral antibiotics.  He, too, was texting me to let me know what was transpiring.  Alas, the text I most anticipated and hoped for (“Baby coming!”) did not come that day but it kept me jumping every time my phone dinged.  I explained the unusual phone activity to my co-workers and tried to focus on my work.

Jeff told Nurse Heather that on his last visit with the kidney specialist, she hugged him because his kidney function had improved.  Nurse Heather praised Jeff for doing what he needs to do.  She says some patients will die because they are unwilling to adjust their routines in any way, including getting treatment. 

Sometime during the day I checked the results of Jeff’s labs online.  His hemoglobin was 12.7.  In the first year or so after bone marrow transplant, we would have considered 12.7 an excellent number.  It seemed low to me now so, of course, I graphed past results.  In fact, it hasn’t been that low in more than four years. I texted Jeff, “Is Dr. Porter concerned about your hemoglobin?”  He is not.  I was relieved to hear that Jeff’s next visit is not four months out, not three months out, but two months.  That might be due to the change in his meds.

Dr. Porter is persistent in his attempts to wean Jeff off of the immunosuppressant.  He changed the dosage to one every other day despite Jeff’s assurances that he is happy to keep taking it if it will keep the GVHD at bay.  Weaning has not worked in the past.  Fingers crossed!

In addition to discussing Jeff’s health, Dr. Porter always asks Jeff about his work.  Jeff told him he is building a large garage/shop, hiring subcontractors for most of the heavy work.  As Jeff left the office, Dr. Porter said, “Good luck with the garage!”  Jeff turned and told Dr. Porter that he should, “Keep up the good work!”  Dr. Porter laughed. 

The baby-coming text arrived Saturday night while Jeff and I were on a date at Grounds for Sculpture.  We’d gone there to experience the musical, light-up, “Impulse” see-saw installation at night.  It was fun to get the text while being childish ourselves.  By lunchtime on Sunday our third granddaughter, Phoebe, was born!  By dinnertime, we had the sweet girl in our arms!  Blessings and joy!