Car-antining and “Boca Baby!”

For months we’ve known that Donor Nicole would be asked to donate T cells for Jeff.  Finally, last week Nicole received her official notification from Gift of Life that she is needed.  She’s been eating less sugar and more greens to keep her blood healthier (Isn’t that sweet!  A double-blessing – for her and Jeff!).  T Cell collection day will be the same day as infusion day but she is in Georgia and we are in Pennsylvania.  I remembered that she and her mother were flown to New York for collection of her bone marrow 10 years ago so maybe…

I texted, “Where will the collection take place?”

Nicole’s reply, “Boca Baby!”

Ah, the beautiful new donation facility at Gift of Life Marrow Registry in Boca Raton, Florida!  https://www.giftoflife.org/posts/post/gift-of-life-opens-new-headquarters-in-boca-raton  We are so happy for Nicole and her husband to get a little get-away.  Jeff’s nurse says Nicole will probably feel fine after the donation (unlike bone marrow donation which knocks the donor down a bit).  She and her hubby, Scott, will actually be able to enjoy themselves!  Donation Day is very near her birthday so she thanked US for the GIFT!  Ha!  Who is gifting whom?

After two units of blood on January 4^th and 5^th Jeff has not needed transfusions during this last cycle of Vidaza/Venetoclax.  And some of his numbers are beginning to turn in earnest.  Hemoglobin has been holding steady in the 9 range since receiving those two units of blood.  Blood transfusions only last for a couple of days so when Jeff maintained Hg in the 9s I suggested we try to find that donor with the magic blood!  As time went on it became evident that the improvement was lasting.  And Jeff’s platelets even wandered into the normal range once!  He still has almost no white blood cells but because his platelets are improving Dr. Porter gave the go-ahead for some deferred maintenance. 

Dermatology:  Dr. Samimi froze some spots on his face and shoulder and removed a weird cell on his back.  It often seems the spots that most concern me are nothing to her.  I hadn’t noticed anything on his face while the benign spot on his back was, well, ugly.  She deftly took care of it as well as the pre-cancerous ones.

Flexible Sigmoidoscopy:  Although the bleeding that concerned Dr. Porter in October/November had stopped, it was still worth having a look-see.  All good.

Dental:  Magic mouthwash is wonderfully numbing for treatment-related mouth pain but one particular tooth has been sore persistently.  Dr. Snead ground it down so it isn’t in the bite as much.  He theorizes that Jeff is grinding his teeth at night.

Jeff has dubbed my working-in-the-parking-garage-at-Penn “car-antining”.  Prior to today’s bone marrow biopsy, Jeff and Nurse Heather called me from the exam room while I was car-antining.   We were able to ask some questions about the upcoming T-Cell infusion.  That day, probably February 10^th, Jeff will go to Penn’s Stem Cell Lab in the hospital’s Ravdin building for outpatient infusion.  The infusion of Nicole’s cells may take no more than 20-30 minutes, depending on the volume.  Since this is so similar to treatment infusions, Heather describes the day as “uneventful”. 

Four to six weeks later we’ll be anticipating Graft vs. Host Disease (GVHD).  Jeff will be monitored for GVHD of the liver, gut or skin.  We’re familiar.  Jeff had GVHD of the liver requiring immunosuppressants for several years after his bone marrow transplant until the disease settled down and left.  The tricky part will be the timing of his COVID vaccination.

Heather says Jeff needs to register for the vaccine and he needs to get it.  However, his white blood cells need to be higher and he cannot be on more than 10mg of steroids when he gets the vaccine or it may not be effective.  It seems unlikely that he will be able to be vaccinated in that four- to six-week sweet spot - after T cells and before GVHD.  We’ll see.

Heather told us that some people yell at Penn’s staff for not providing the COVID vaccine. The hospital gets doses for their employees but not for the general population, even cancer patients.  We know Jeff will have to wait his turn and trust that Bucks County is doing the best they can with the limited doses they have available.

Jeff turned spoons on the lathe again for Dr. Porter and Heather. Heather wasn’t in the office on the day he left a spoon for her so Jeff asked, “Did you get your spoon?”

Heather was focused on the bone marrow biopsy she was about to perform using a “spoon” so the question initially puzzled her.  Then she realized which spoon Jeff was referring to and laughed.  “Yes!”  She thanked Jeff and said her husband really, really likes wooden spoons.

Jeff was buoyed by Nurse Heather’s encouragement today.  There’s a medical professional who treats the soul as well as the body!

Another ray of sunshine:  only weekly (instead of twice weekly) blood draws will be required going forward. 

Happy Birthday to Jeff!

What a day to start Cycle 4 of Vidaza/Venclexta!  Dr. Porter says Jeff’s birthday is a good day to start what we hope is the last treatment cycle because it seems to be working.  He thinks Jeff should be ready for Nicole’s T cells by early to mid-February!  And he observes, “You’re getting old and that’s a good thing.”

Jeff’s birthday gifts included dinner prepared by Son Kerry and DIL Theresa and delivered to our door, handmade cards from our granddaughters, a sweater vest from Daughter Kim, a silly video from Donor Nicole and texts and messages from family and friends including an early greeting (early to us in EST) from Friend Steve in New Zealand.

Birthday “treats” continued at Penn’s infusion center.  We left the house at 6:50 a.m. for what Jeff believed would be a short visit, just the Vidaza infusion.  Alas, his hemoglobin was 7.2 and he needed a blood transfusion. 

Jeff texted me in the parking garage, “How many people can say they got blood for their birthday?”

It takes such a long time to type and crossmatch his blood and check the donor blood for antibodies.  He waited three hours for the blood product during which time he was offered – and accepted – a MASSAGE!  What a treat!  They infused only one of the two units required (the other will be given following his treatment tomorrow).  His short visit turned into a whole-day affair. 

I kept myself busy for the duration.  I worked for three hours until my laptop lost power, picked up Jeff’s prescription at Penn’s specialty pharmacy, went for a long walk, got lunch, listened to an audio book and took a catnap. Finally, Jeff returned to the car at 4:30!  We got home at 5:30 p.m.  Somehow, the day was more tiring for me than for him. 

The compulsion to be creative and productive is strong in Jeff.  While hospitalized in October, he designed a floor lamp. Since then, little-by-little, he spent time in his shop turning parts of the lamp on the lathe, shaping other parts, assembling all with a giant screw from a bookbinding press we’d acquired at an auction many years ago.  The result is a great piece.

Some of the care Jeff requires is reminiscent of a baby’s needs:  soft foods, naps, baby powder, soothing.  My baby puts himself down for a nap and remains there reliably for hours, expresses gratitude for soft foods prepared and appreciates cooing and backrubs.  Although this journey is not a picnic we consider ourselves lucky to have each other.