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!

Good News, Bad News, Good News

Good News, Bad News, Good News

Good News:  Jeff’s kidney function is good.  If his numbers are good in September, Dr. Pat will push out the following visit to six months!  Woohoo!

Bad News:  Our blood cancer networking group had six new members this month. Some of their stories are pretty sad: a husband/caregiver who was himself diagnosed with cancer a year after his wife’s blood cancer diagnosis - when their daughter was 4 years old, and a single mother of a 9-year-old blood cancer patient with unique challenges, and a quiet but tough cop whipped by a blood cancer diagnosis.  We greeted them all, “It’s nice to meet you.  Sorry you are a member of the club.”

Good News:  Although the tissue box was passed along as the new members shared their stories, everyone was uplifted and laughing by the end of the meeting.  And that is part of the reason we still attend this group.  One man tentatively asked Jeff, “I don’t know if this is okay to ask but do you have foamy urine?”  Michael – who could have probably answered the question on Jeff’s behalf - assured the new member, “There is nothing you can’t talk about here.” 

Thank you to Gilda’s Club for providing a safe place to discuss the unmentionable and to the members of our group – “old” (6 years) and new – who help us find purpose in Jeff’s cancer experience.

"I'm Happier Now"

We have heard stories from cancer patients about the crazy ways disease is discovered.  Jeff had a bad case of poison ivy that sent him to the doctor.  Friend Michael broke his neck while boogie boarding with his son which led to a diagnosis of Multiple Myeloma.  At the MDS Foundation Family Coping and Caring Luncheon at the White Dog Café in Philadelphia last month, two of the six patients in our group were diagnosed after being deferred (for low hemoglobin) at a blood drive!  There’s another reason to donate blood, if you are able – free mini-screening for blood problems.

The MDS Foundation sent out a call for participants for a study on AML symptoms.  Data would be collected via a phone interview which I knew Jeff would prefer to the tedious online surveys that ask “On a scale of 1-10 how significant were the following…”

MDS sometimes turns into AML, as it did in Jeff’s case.  Jeff went from MDS, to AML, to transplant so quickly that it didn’t seem likely he would qualify for the study.  An online questionnaire for Jeff and another for his oncologist, then a follow-up email with the study team and he was in!  He was happy about that.  Then he began to express anxiety about his ability to answer questions because, he said, “You’re the one who knows this stuff.”  The study was about symptoms and side effects.  It would not include naming drugs or giving specifics on the timeline of events, things his memory has gloriously - and fortunately - muddled.  He asked me to schedule his session on a day when I would be able to sit beside him for moral support.

I admit that as the day approached, I wondered how useful Jeff’s contribution would be, given his poor recall of that time.  Just before the phone call I primed his brain, “Remember that the study is about AML symptoms.”  He said he didn’t remember ever hearing that he had AML. Oh, boy.  I reminded (informed) him that after four months of Vidaza treatments he had a bone marrow biopsy which revealed the disease had morphed into AML.  AML was the reason for his first hospital stay – to get his blasts down and make him viable for transplant.  “Think about the symptoms you had during that time.”

The phone interview took place during what would normally have been Jeff’s naptime.  We’d put our granddaughters down for their naps and placed the call.  Researcher Sengyeon got Jeff’s permission to record the call.  Jeff asked if he could put her on speaker phone so I could listen.  Hearing the questions as well as his responses made it more interesting for me and allowed me to jot down an occasional prompt on a pad of paper – “typhlitis”, “one month”, “memory”.

Jeff seemed to be having difficulty answering the questions that were asked but he kept talking.  Sengyeon was patient and took good notes about his symptoms which she recapped later.  After the open-ended questions, she asked, “Now I’m going to tell you some symptoms that other patients have described and you tell me whether you ever experienced them.”  Then Jeff remembered!

“Oh, yeah, I had diarrhea!  Yes, vomiting, too.  You’re making me remember all the bad things!”

Memory problems were discussed although Jeff isn’t a very good judge of his own losses in this area.  The question about sexual function was followed by a long pause (I was curious what he would say) and then his response, “No.  No problems there.” 

The final question:  “In what ways has AML affected your life?”

Jeff said life-before-cancer did not involve incessant doctor visits and he feels that some family members don’t seem to acknowledge what a significant change that is for him. 

Then he supplied another consequence of cancer:  “I’m happier now.”

The interview lasted an hour and a half.  Sengyeon graciously thanked Jeff for giving up his nap (he’d admitted to skipping his nap mid-interview when he was slow to articulate his answers) and she apologized for causing him to remember things he might prefer to forget. 

Later I told Jeff how surprised I was to hear he believed he was happier. 

“Well, don’t you think I am?” he asked.

“You were always happy,” I said. 

I suppose his increased joy could have something to do with savoring life, recognizing each day for the gift it is.  I wonder how many participants gave similar replies.  If it is a common sentiment, the researchers are lucky to hear it again and again.

Jeff was paid a fee for his participation and he knew immediately what he wanted to with the funds – donate it back to a couple of the organizations that have helped us both cope with life after treatment.

Prayers, please, for the family and friends of Big Rich, an MDS patient who passed last week of GVHD of the liver and lungs.