Body Parts

Jeff was doing well enough to drive to the city, I thought.  He is alert and clear-headed, lasts longer before requiring a nap, and is stronger.  When I suggested he drive himself to his in-person appointment with Dr. Porter, he was surprised. 

Some of what it takes

“Do you think I can?” 

“Yes, don’t you?”

“I guess I can!”

He was like a teenager being granted car privileges for the first time, excited and a little apprehensive.  

In Dr. Porter’s office, Jeff called and put me on speakerphone.  Dr. Porter is very happy with Jeff’s blood counts.  Platelets and white blood cells are in the normal range and hemoglobin is inching towards normal, in the 11s now.  Jeff reported that he is still getting winded when climbing stairs but Dr. Porter says he can no longer blame it on the hemoglobin.  Time to get in shape! 

I referred to my list of questions and asked if Jeff could enjoy a beer once in a while.  Dr. Porter said while watching for GVHD he would prefer Jeff avoid alcohol which can give confusing results on blood tests.  They will need to watch his liver closely in this window of 1-3 months post-DLI.

“A half a beer on occasion would be okay,” Dr. Porter conceded.

Not a problem.  Jeff isn’t much of a drinker but would enjoy a beer – or half of one – now and again.

Jeff also reported some weird issues with various body parts that he might have mentioned a month or two ago but didn’t.  He had something on the roof of his mouth for months until one night while eating tortilla chips, it disappeared.  Dr. Porter looked at the area and referred him to his dentist.  A semi-annual visit with the dentist was already scheduled for later that day.

The dentist took an x-ray, diagnosed an abscess, prescribed an antibiotic and said Jeff needed to have the molar extracted in the next couple of weeks.  There is bone loss in the area and it is quite infected. 

The first oral surgeon we called wanted to know if Jeff needed hyperbaric treatment prior to the surgery, how many rads he received during his full-body irradiation in 2011.  We checked with Dr. Porter who deferred to the oral surgeon.  We were left wondering, “Is hyperbaric treatment really necessary?”

After consulting with my sister Judy (a retired hygienist) and, through her, a dentist whose opinion she values (a former boss), we decided that it was better to get the molar out sooner rather than waiting for a series of hyperbaric treatments.  We called another oral surgeon who could accommodate Jeff right away.  Jeff was asked which of their two surgeons he would like.  Jeff, not familiar with either one of them, quipped, “The good one.” 

The surgeon did not want to be too hasty.  Jeff assured him that Dr. Porter had cleared him for surgery – better not to have an infection!  I presented the lab results on my phone and, finally, he was satisfied.  The man was thorough and, although he lacked bedside manner, we appreciated the care he took. 

The tooth was easy to extract as Judy said it would be, given the bone loss in the area.  It came out in one piece and yet Jeff thought there were a lot of tooth bits flying around.  He has had relatively little pain in the area since.

Another weird body part issue he might have mentioned but didn’t:  sore breasts.  Nurse Heather joked, “Are you ovulating?”  Jeff thinks that’s a sign that your medical professionals know you really well, when they can joke about anything.  Dr. Porter says we will have to pay attention, wait and watch.

Yet another weird issue: facial rash.  We’d thought it was mask-ne (acne in the mask area) and Dr. Porter agrees.  Nurse Heather, however, remembered reading a report from the dermatologist that said he had “quiet” rosacea.  Well, it isn’t quiet anymore.  The right cheek has splotches that can be subtlety pink or flaring red, pimply or hive-like, slightly raised or quite swollen.  Sometimes his eyelid, nose or forehead is also affected.  The changes occur rapidly and often throughout the day. 

“I’m like a mood ring,” Jeff says.

Jeff and I have both gotten our first COVID-19 vaccines.  It is embarrassing for me to admit that I have gotten my vaccine - not old enough, not sick, maybe not my turn.  Jeff, of course, is Phase 1 and eligible for a vaccine.  Our family is relieved Jeff finally got vaccinated before the potential for GVHD, thanks to a tip on available appointments from Niece Melissa.  Family members believed I should be Phase 1, as caregiver to an immunocompromised person.  However, that does not qualify me in Pennsylvania.  Son Kerry insists I qualify in Phase 1 because of my BMI.  I rationalized; maybe that is a valid qualification for me.  I have been concerned about my fitness at a time when we are supposed to stay healthy to fight COVID should we contract it.   I had not been exercising as usual because Jeff is often eager for company after my at-home work day.  If we exercised at all, it was at his level and speed.  So, I decided to Own My Obesity and schedule an appointment. Kerry grabbed an appointment for me one week after Jeff’s.  Because Jeff got the Moderna vaccine (2^nd dose at 4 weeks) and I got Pfizer (2^nd dose at 3 weeks) one week after Jeff’s, our second doses are on the same day!

Through our friend Michael, I was put in touch with BMT Infonet, a post-transplant group out of Chicago.  They invited me to facilitate a writing workshop at their annual symposium in April.  I’ve had my training for the virtual event and look forward to hosting probably three sessions, probably caregiver groups, to spend time exploring and practicing writing techniques that are useful for healing.  There is a waiting list of 150 people for these sessions.  Obviously, there is a need.  What a gift to be able to spend time with other people connected to bone marrow transplantation and who are interested in writing.  Visit BMTInfonet.org.

First Towpath Hike of 2021

Jeff and I take increasingly longer walks around our neighborhood.  Today we resumed our Delaware Canal Towpath hikes with a 5-mile trek.  Jeff was proud he could keep up and last that long.  He was a little stiff at the end but wants to get out there again very soon!

Thank you for caring about Jeff and me.  We are grateful every day for the people we have supporting us, near and far. 

Feeling the Love

Nurse Heather described DLI (Donor Lymphocyte Infusion) as uneventful and I was unprepared for the emotional toll it would take.  The infusion itself wasn’t concerning but we watched the weather forecasts, wondering whether those beautiful cells could make their way from sunny Florida to wintry Philadelphia – and us from home to Philadelphia – between snowstorms.  Well, truth be told, I suppose there was a certain amount of angst about getting to the other side of DLI regardless of the weather.

Wednesday was collection day.  Donor Nicole and her husband, Scott, were at the Gift of Life Marrow Registry headquarters in Boca Raton Florida for the occasion.  They’d flown in early to enjoy some time with Scott’s family in the area and to have a nice beach get-away. 

During a 7-hour process, Nicole’s entire blood volume was circulated through a machine twice (!) to collect lymphocytes for Jeff.  Both of her arms were occupied so she binge-watched a TV series.  Scott was kind enough to post pictures on FB – Nicole hooked up to the machine, a wall of pictures of Nicole during her marrow donation 10 years ago and of she and Jeff at the Steps for Life Walk/Run where they first met, and Nicole watching the video that we were asked to prepare for her.  The tears in her eyes as she watched our video sparked many of us up north to shed a few tears ourselves.  The last photo Scott posted was Nicole holding the bag of T Cells and modeling her new Gift of Life Donor T-shirt.  (“I know you did it for the swag”, I later teased her.  She replied, “and the trip to the beach!”) 

Meanwhile in Pennsylvania, I was working.  I should have taken the day off because my mind’s ability to concentrate was impaired by my excitement and anticipation (a la Christmas Eve my entire life) and Jeff, I think, wanted company while our phones kept dinging with well wishes from family and friends. Jeff’s Home Infusion nurse came to change the dressing on his PICC line and to draw blood.  She joined in our excitement and indulged Jeff as he proudly showed her the pictures Scott had posted on FB.  And we got a phone call from the transplant coordinator at Penn to tell us that his infusion appointment had been changed from 8:30 to 11 and a 9 a.m. lab appointment was added so they could type and cross his blood.  We knew that would add hours to the day.  So be it.  And we watched weather reports and contemplated staying at Daughter Kim’s place in the city overnight.  In the end we did not.  Only 1” of snow was predicted.  The main roads would be fine. 

A Gift of Life staffer told Nicole the cells would be sent via courier to Philadelphia.  We figured the later appointment would allow for potential weather-related flight delays.  Maybe everything would come together as planned.

On Thursday we arrived early at Penn’s Perelman Center.  We didn’t have any problems getting into the city despite the weather reporters stressing “allow extra time”. We ate our breakfast in the car before Jeff went to his lab appointment.  They were able to take him early so that he was finished with his 9 a.m. appointment before 9 a.m.  We waited an hour in the Perelman Center’s public area until Jeff, eager to get things going, suggested we walk over the bridge to the hospital and wait for his 11 a.m. appointment in their waiting room.  On the bridge, we followed a woman in a lab coat carrying a red and white cooler.  Jeff said, “That could be my cells or that could be her lunch.”  We were tempted to ask. 

The hospital lifted some COVID-19 restrictions and this was only the second day they allowed companions in the Apheresis and Infusion Center.  The staff at the reception desk all looked up from their work and smiled at us.  I wondered whether they knew it was Jeff’s special day.  Despite arriving one hour early, we hadn’t even settled into chairs in the waiting room before Jeff was called and we were shown to a room.  Nurse Dana said the infusion would begin at noon at the earliest because of the time-consuming type and match that had to be done on Jeff’s blood and Nicole’s T cells.  I asked if they would prefer if we came back later.  She assured me the room was ours for the day.  Jeff watched TV and I read a book.  We also exchanged texts with Nicole (I believe she may have been a little anxious about all this, too) and family (ditto).

I asked Nurse Dana a question that had occurred to us.  Previously, when Jeff’s blood and donor blood were checked for antibodies, we thought if there was a problem the lab would simply go to a shelf of blood products and test a different donor for matching antibodies.  In this case, what would they do if there was a mis-match with Nicole’s?  Today she is Jeff’s one-and-only.  Dana said she wasn’t sure how to answer the question and she would have a pathologist come to explain it.  Well, we got an education from a very nice, very animated Penn professor.  The upshot is, should there be a problem, they would know to watch for a reaction.  They’d administered Tylenol and Benydryl, I believe as standard procedure.  When the lab was within one hour of completing their work, they alerted Dana so she could begin giving fluids.  An hour of fluids, almost an hour for infusing T cells (slow rate and large volume - three times the usual amount for some reason), another hour of fluids.  Jeff slept through most of this.  4 p.m. Done.

Jeff felt no different.  He felt well enough to watch our youngest granddaughter on Friday.  On Saturday we did nothing.  N.O.T.H.I.N.G. 

Lab results from Wednesday’s at-home, pre-DLI blood draw were posted to Penn’s portal.  WBC much improved, 3.1!  Hg 10.3!  Platelets 98,000!  All heading towards normal!  Nurse Heather had told us that the biopsy showed 96% of his marrow is Nicole’s (pre-chemo it was 76%).  It seems like Nicole’s T cells only have a little bit more work to do, chomp the remaining cancer cells.

Jeff to Nicole:  I hope your cells are hungry.

Nicole to Jeff:  They are!

Jeff theorizes that his body already recognizes Nicole’s cells and that GVHD may not become a problem for him.  Nurse Heather says they really don’t have any idea because Jeff’s situation is rare:  ten-year bone marrow transplant survivor, subsequent DLI infusion, marrow and T cells from the same donor…

Strange:  Jeff is suffering from Mask-ne, blemishes on his face in the mask area.  At least that is what Dr. Amy thinks it is.  It is quite persistent in two spots.  Jeff says if it had happened after DLI he might have suspected GVHD of the skin. 

Stranger yet:  A week after finishing treatment (hopefully forever) ads for Venclexta began popping up on Jeff’s FB feed.  Really?  Are you supposed to ask your doctor if this medication is right for you?  Well, Genentech, impressive/creepy ad-targeting but you are a little late to the party.

Many, many thanks to everyone who has been praying for Jeff, sending messages of love, and supporting Nicole’s birthday fundraiser for Gift of Life.  We enjoyed reading the messages Nicole’s family and friends posted on FB in support of her wonderful-ness and appreciate their prayers as well.  We are feeling the love!  XOXO

Happy Valentine’s Day!

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.     

Cycle 3 Begins

Question 1:  In a quiet voice I asked Jeff, “Why do you think you tolerated the second cycle so much better than the first?”

Like me, he did not want to jinx it.  He whispered, “I don’t know.  I was wondering that, too.”  

During the first cycle we borrowed a shower stool and a wheelchair when things were bad.  They gave umbrella-like comfort – better to have it and not need it than need it and not have it.

Question 2:  “Does Jeff need Cycles 3 and 4?  Or are the blasts in his marrow below 5%?”

Thanksgiving Week - Monday

Oncology Nurse Heather, always the cheerleader, addressed Question 1 prior to performing the bone marrow biopsy.  Jeff was with her in the office and they called me - in the parking garage – to include me in the discussion.  Heather thought maybe the Vidaza/Venetoclax combo was working and lots of cancer cells were dying and clogging the bloodstream, causing Jeff problems during the first cycle.  Cycle 2, things settled out a bit.  Heather was so encouraged by Jeff’s blood work (red and white cells low but holding steady, platelet count still low but rising) that she gushed her hope that the marrow would show improvement, too

Having a bone marrow biopsy on the Monday of Thanksgiving week means the usual “results back in two or three days” might not apply.  The wait was made much more bearable by Heather’s encouragement and enthusiasm.  We waited without dread and only a little anxiety.

Labs drawn at this appointment did not indicate a blood transfusion was needed.  Jeff was disappointed because he’d hoped to have a little zip to make for a productive Tuesday in his shop.

Tuesday – Jeff worked in his shop on a walnut floor lamp he sketched while in the hospital in October.  He turned the parts on the lathe a little bit at a time when he felt up to it.  (We’d bought the lathe when he was diagnosed in 2010 to provide a less strenuous woodworking activity.)

Wednesday - Jeff’s labs were drawn at home, centrifuged, and picked up by 1 p.m. but because of the holiday on Thursday we didn’t expect to get results until Friday.

Thursday – We’d debated strictly heeding expert advice about COVID safety at Thanksgiving gatherings, “People in your household only.”   We decided to invite our children and grandchildren, our quarantine circle, the only people we see outside of doctors.  As always, it was a mask-on visit.  Our children suggested a kids’ table for dinner.  We put a tablecloth and centerpiece on the kitchen table and assured Granddaughter Rosie that if she said, “I’d like to say something,” we would hear her in the next room. 

Friday - The blood counts were still not posted on Penn’s portal in the morning but we needed to know whether a blood transfusion was necessary before the weekend.  Eventually, Heather called to discuss his biopsy and the answer to Question 2 (8% blasts – better but not good enough; yes, another two rounds of chemo).  She also wondered whether he ought to have a transfusion.  His hemoglobin wasn’t yet low enough to warrant a transfusion but she calculated that if it continued to drop at the current rate, he was going to feel pretty lousy by Monday.  She scheduled a 2 p.m. appointment for a blood draw and crossmatching and a 4:30 p.m. transfusion. (Matching donor blood is time-consuming because Jeff has a history of antibodies in his blood.)  We drove to the city.

When it was time for Jeff’s transfusion, he was directed to a room with a bed instead of the usual recliner.  He asked whether that was really his room.  The nurses assured him it was.  He took off his shoes and shirt (for access to his PICC line) and climbed into bed.  They brought him a warm blanket.  He began to drift off to sleep, anticipating that he would be snuggled in for an hour or more.

The nurse returned in a few minutes with bad news.  No match.

“What?!”  This was the first time Jeff needed blood and couldn’t get it. 

The trip was a bust except that we did get to see my sister, Nancy, and her husband, Ken, for a short visit and a shared elevator ride to parking level P3.  Someday we will meet somewhere besides the cancer center. 

Over the weekend we wondered whether there would be a problem getting blood on Monday.  An appointment was set for 10 a.m. Monday morning to stay within the 72-hour window for the crossmatch that was done on Friday afternoon.  Unfortunately, the treatment appointment was for 4:30 in the afternoon.  We worried that Monday would be a very long day if the treatment appointment could not be moved forward. 

On Monday morning we drove to the city without confirmation that there was blood waiting for Jeff.  We made the trip record time.  No slow-downs on I-95, no accidents, very little traffic.  Plenty of parking at the Perelman Center.  All good.  We had time for coffee/tea before I headed to the garage to work in the car and Jeff went upstairs to Infusion.

The COVID surge has sent me back to my car in the garage of the Perelman Center to avoid the public areas as much as possible while Jeff has his appointments.  We’d parked on P3, the third level underground.  I prefer P2, especially if I am working, because P3 has the giant air handler for the garage.  It is very loud.  If I have a Zoom meeting on P3 I have to stay muted until I need to speak.  My coworkers told me it isn’t too bad but if I spend too much time down there it drives me bonkers.  Sometimes I move to P2 later in the day when it looks like spots are opening up.  For Cycle 3, Day One, instead of a steady LOUD, the air handler sounded like it was revving up for lift-off.  I alerted Jeff by text that the whole building might soon take off.

Heather called Jeff while he sat in the Infusion waiting room.  She suggested a new order of events:  blood draw, Vidaza infusion, red blood transfusion.  That makes sense!  Everyone involved was very accommodating, the pharmacist who mixed his Vidaza, the infusion nurses, Nurse Heather. 

Jeff texted to let me know what was happening and to give an estimate of the time it would take to finish.  About half-way through he texted, “Did you go to the pharmacy for my meds?” 

 Me:  “No.  I’ll do that now.”

Jeff:  “My window looks out at the atrium over the pharmacy.”

…  Me:  “I’m there now.  Can you wave?”

He went to the window and waved.  Small joy.  I went to the pharmacy then back to the garage. 

Treatment took about half an hour, blood transfusion took an hour and half and when all was finished, a nurse said, “I’ll see you tomorrow.” 

He replied, “As a comedian might say, ‘I’ll be here all week.’” 

Everything went well and we were on our way before 2 p.m.  The trip home was as uneventful as the trip down.  What we thought would be a stressful, long day turned out to be a good day. 

Family and friends responded to my FB post about blood shortages around the holidays.  We loved seeing which of our family and friends were regular donors and thanked each of them.  We are grateful for all blood donors.  Find a drive here:  https://www.redcross.org/give-blood.html

Humpday, Vidaza Cycle 2 - Friday the 13th, 2020

Jeff has finished four days of seven in this month’s Vidaza treatment at the Perelman Center (local treatment was not so appealing after all was considered).  He has been given a blood product - or two or three - every day.   Nurse Heather said she and Dr. Porter are a little surprised that Venclexta (the new-fangled drug that accompanies Vidaza) is hitting him so hard since he is “young”.  Jeff does not have a youthful perspective, however.  He says he always thought we would grow old together but he “thought it would take longer.”

Treatment Goal:  “Blasts at 5% would be nice,” Dr. Porter said.  He would take “lower” before Nicole’s T cells could be given.  A bone marrow biopsy is scheduled for November 30th to see where things stand.

Weird but true:

A Halloween-costumed infusion nurse remembered us from 9 years ago.  She de-masked to see if we remembered her.  We did not.

In the midst of a near-fainting spell, Jeff lost his lips (I told him they were the same color as his very pale skin).  He said that was because “they needed kissing” demonstrating that his funny bone is perfectly healthy.

Jeff went to the infusion area of Penn’s Perelman Center and I went to pick up Jeff’s prescription at the Specialty Pharmacy in the building.  I stuffed the bottle into my purse and decided to go for a walk.  Shortly thereafter I realized that I was carrying $4,000 worth of drugs around the streets of Philadelphia.  

After a late night at the Perelman Center for treatment, multiple blood products and a post-platelet count, we drove home well after dinnertime.  Searching the console for anything we could put in our mouths, I offered Jeff a Tic Tac.  He put one in the palm of his hand and sighed.  I asked what was wrong.  He said, “I can’t believe I’m taking another pill.”

Jeff has pulsatile tinnitus; he can hear his pulse in his ears.  It goes away after he has been given red blood transfusions.

Jeff finds new ways to thank me for “putting up with him”.  He began reciting the lyrics to Cole Porter’s “You’re the top”.  I asked Alexa to have Ella Fitzgerald take over, “You’re the top, you’re the colosseum…”   It’s easy to “put up with” this guy.

Cycle One Nearing Completion

We saw a FB meme about Halloween, “Don’t you think Halloween is unnecessary this year?  We’ve been wearing masks and eating candy for 7 months now.”  Jeff feels similarly about TV, I suspect.  Since the start of the pandemic, we’d been watching more TV than we usually do.  Add to that inactivity-due-to-illness and, well, Jeff often has the TV turned on.  Mind you, some of it is viewed through his eyelids.

Puzzles aren’t amusing Jeff anymore.  We borrowed a seek-and-find book from our granddaughters and found all the hidden things on every page.  And Jeff is playing a new game on our Echo Dot.  He sets timers like “Kiss Jeff” and timers to get Alexa to say his pet names for me.  I am not sure why this is so funny.  I guess because no one else on earth calls me “Scooby Boobie” except Jeff, and now Alexa. 

On Mondays and Thursdays the monotony is broken up by a visit from a home nurse.  The nurse draws blood, changes the PICC dressing and flushes the lines (Jeff takes care of flushing the lines himself on the other days), asks about side effects and offers tips and suggestions, and advises when the doctor should be called.  They are a caring bunch of professionals.  Their visits enable Jeff to stay at home and still have his blood counts checked regularly.  A courier picks up the centrifuged blood, takes it to the city and by the end of the day Jeff’s lab results are posted on the Penn portal.  If his platelets are under 11,000 he gets a transfusion of platelets the next day (this is expected during this treatment).  So far he has needed a few platelet transfusions and red blood cells only once.

Last week I mentioned to Nurse Jennifer that I knew a home nurse who serves patients in the city, sometimes in uncomfortable, even dangerous, situations.  Jennifer turned to me and said, “I was carjacked at gunpoint two weeks ago outside a patient’s home.”  She had been in the habit of serving not only the patient but also the patient’s family by connecting them with services and non-profits that could help fulfill other needs like clothing.  However, she is a single mother and believes visiting patients in the city might be too big a risk for her right now. 

Jeff isn’t supposed to floss his teeth while his blood counts are so low.  A nurse suggested using a Waterpik.  On his first try, Jeff was thrilled with the junk that he was cleaning out from around a particularly troublesome tooth.  Then he swished past his other teeth and noticed his gums were bleeding.  The Waterpik is too rough; he is using it sparingly.  He brushes gently with a super-soft toothbrush.  I try to help by planning soft meals.  Kim shared a Dal recipe that should go down nicely, I think.

We’re nearing the end of the first month-long cycle of Vidaza/Venetoclax treatment.  Side effects have been mounting bit-by-bit and Jeff’s putzing has become less rigorous yet more exhausting (washed the kitchen window, touched up the paint around the outlets he’d installed).    I try to do all the “heavy lifting” like carrying a wash basket up a flight of stairs.  Jeff was annoyed that I called Kerry to help Kim change the oil in her car.  My case:  Bending over causes him to breathe heavily.  Carrying things upstairs – or even putting on his shoes – can cause marathon-like panting and sweating.  Our primary doctor instructed Jeff to go to the ER (Jeff wants to wait for Monday and get an ordered test in the lab rather than at the hospital with all those sick people!).  Kerry was happy to help.  I rest my case.  I make no apologies except I am sorry Jeff isn’t well enough to do the things he wants to do.

Yesterday morning Jeff woke up complaining (a rare thing for our cheery hero) about issues that had been occurring intermittently but at the moment were simultaneously plaguing him:  headache, bleeding gums and mouth pain (thank you, Ken and Nancy, for the Magic Mouthwash), joint pain, diarrhea, painful urination, and an uncomfortable twist in an unmentionable nether region requiring the aforementioned test. 

This week Jeff’s blood counts should have begun to turn around.  We are concerned and wondering how Cycle 2 can safely begin.  It’s hard to imagine how he gets around as much as he does with his blood counts on a downward trend.  This is expected but nevertheless worrisome.  Hopefully his counts will begin to rise this week.

It is no fun having my sister and my husband in treatment at the same time.  It is good for them, though, because they can commiserate. Last week we were heading to the city for Jeff’s transfusion and I realized it was my sister’s chemo day.  Lots of texts later, Nancy and Jeff were able to meet and visit on the infusion floor at the Perlman Center!  I couldn’t see Nancy because I was not allowed in the treatment area due to COVID restrictions.  Instead, I met Brother-in-law Ken at the pharmacy in the building.  It was ridiculously exciting – as if we’d arranged to meet for a night on the town!  Niece Melissa described it as the “least fun double date in the world.”  

“Stay safe,” folks are saying to each other these days.  We need to try harder than most, of course.  Except for doctor visits, we stay in.  I work at home exclusively, pick up our grocery orders and seldom go into a store.  Keith picks up things for us now and again.  We have weekly mostly-masked visits with our children and grandchildren, and talk to our siblings on the phone.  Last weekend we enjoyed a brief backyard masked-and-socially-distanced visit with our friends Ken and Kathy from Florida.  They tested for COVID in anticipation of attending a family wedding.  It was odd not to share a meal with them - gone are our Dinner Club days – but it was really wonderful to see them! 

Life during a pandemic hardly resembles normal.  Ditto life during cancer treatment.  We do the best we can to make the most of each day we are given.

Tales from the Bedside

I was barely managing the start-of-term insanity with work and, because my office is at home these days, I could see and hear what Jeff was up to while not working, waiting for treatment to begin.

He was nesting like a mother-to-be, though often sighing phrases like “What do you think?” and “What next?” and “Well…”  He took care of yardwork, installed a switch for our generator in case of a power outage, changed an electric outlet in the kitchen, puttered in his shop, removed a shrub, dug a hole for a new tree we’d ordered, did some grocery shopping and kept his Grandpop days with our granddaughters (that was deemed “essential”). 

Dr. Porter’s office informed us of their decision to admit Jeff for in-patient treatment so they could more closely monitor his kidneys and blood counts.  It was disappointing to Jeff who previously voiced his opinion that “I’m never going back there.” I was relieved.  In the hospital if he was unable to drink enough water to protect his kidneys- or keep enough down -they could give him IV fluids.  Yes, I thought a week in the hospital would be good idea. 

Jeff was admitted to HUP on October 1^st and completed his 7-day Vidaza/Venetoclax treatment with very few issues.  IV fluids had to be stopped when he began to retain too much water.  His counts, as expected, dipped low enough to require infusions of platelets and red blood on discharge day.  Another transfusion of platelets - and whatever else he may need - is scheduled for Monday.  Blasts were 23.8% at one point (I didn’t ask for an update every day). 

It took a while to get used to the low-protein diet intended to protect his kidneys.  The nursing and dietary staff were unfamiliar with a low-protein diet as not many patients require it.  Everyone was fumbling for awhile to replace forbidden foods (salmon, turkey sausage, cheese) with something suitable – but what?!  The food server’s iPad kept rejecting Jeff’s choices until he learned to spread out his protein throughout the day. 

Jeff wants to share some of the highlights of his hospital stay:

A blood pressure machine marked "C Diff Only" was regularly wheeled into the room, striking fear into Jeff’s heart.  Finally, he asked them to explain why they were bringing the C Diff machine into his room – NO C Diff here, thank you very much!  Evidently, the machines were originally purchased exclusively for use by patients with C Diff (a specific funding purpose) but are now used universally and, the nurses assured us, had been thoroughly cleaned.

One of his favorite nurses from his 2011 hospital stay still works on Rhoads 7 and is still treating patients with tender loving care.  He told Nurse Alana, “You’re the best.” 

Donor Nicole sent an awesome pair of slippers that he proudly wore on his many hall walks.  Some of the nurses commented on his speed.  He heard one say, “He’s so cute!”  Indeed.

Carol, a new friend on Rhoads 7, joined Jeff for some of his hall walks. 

One morning he’d had trouble finding his favorite news channel and, instead, settled on a children’s’ show he likes to watch with our granddaughters, called Secret Museum.  While he was learning about Cleopatra he heard a disturbing discussion, “He has COVID.”  Somehow he thought his roommate had COVID!!   In fact, they were referring to our president. 

I asked Jeff whether his string beans lived up to the hospital’s slogan “Fresh is Best”.  He used a bean to scoop up some mashed potatoes and showed me the resulting String Bean Man with White Wig.  Well, it seems the bean was crisp enough to stand up to that test.

On Day 7, ready to leave for home, Jeff announced he would miss the hospital’s “exfoliating towels”.

Nurse Dawn from Penn Home Infusion came to tend to the PICC line today.  She remembered Jeff from her 2011 visits to our house!  She set up a centrifuge to prepare Jeff’s blood draws for transport to the lab.  The machine is now a fixture in our living room.  Within an hour a driver picked up the blood to take it to Penn’s lab in the city.  Incredible. 

Jeff feels well though a little itchy from the transfusions, gets winded a bit but took no nap today (a noteworthy achievement)!

We are ready to Light the Night with the Leukemia and Lymphoma Society tomorrow night (virtually, of course)!  Go Michael and Team M&M Sluggers!

 

This Time Around

Jeff is modeling his new blanket from Subaru/L&LS.

We waited anxiously in the exam room.  Jeff seemed calm yet I found myself as fidgety as a kid ready for recess.  I noticed a sign listing the services Penn offers to cancer patients – massage, Reiki, nutrition, acupuncture, aromatherapy…  I asked Jeff if he would consider aromatherapy.  He said he’d heard "it stinks”.

Eventually, Dr. Porter came in, commented on my patterned mask and patterned blouse (“matching? No.”) and asked how we were doing.

“You tell us,” I said.

“Eh,” he replied. “It’s never good when leukemia comes back.”

Dr. Porter was uncharacteristically scatterbrained today.  He kept losing his train of thought and he thought he hadn’t told us something that he had, in fact, told us twice before.  He’s a sharp guy and we’d never seen him like this.  Better that we chalk it up to everyone-has-a-bad-day-once-in-awhile rather than the possibility that he was afraid to deliver uncomfortable news.

Jeff’s blood counts continue to drop.  Dr. Porter wished we could “watch it smolder” and take action later but that is not advisable.  The plan is to give Vidaza again, this time through a PICC line, and accompanied by a daily pill, Venetoclax, which improves the efficacy of Vidaza.  It will also cause his blood counts to go lower before they get better.  Treatment will begin on an outpatient basis but Jeff may need to be hospitalized if his counts get too low or if he gets an infection.  Dr. Porter will call Penn Langhorne to see if they would take an AML patient.  If so, the outpatient treatments could be done locally.  Another option would be to return to Dr. Julia Kennedy at Aria Torresdale where he had his Vidaza treatments 10 years ago. 

Jeff’s creatinine was high today so Dr. Porter will also set up an appointment with a kidney specialist at Penn in the city.  I am glad of that.

Leukemia cells break down as they are treated and tend to clog things up, particularly the kidneys.  A drug called Allopurinal can help.  Jeff will start that tomorrow.

After two cycles of the Vidaza/Venetoclax combination another bone marrow biopsy would be done.  If his blasts are down, they may ask Donor Nicole - through the National Bone Marrow Registry - for T-cells in the hopes that her healthy T-cells would eat Jeff’s remaining cancer cells.  Chomp! Chomp!  There is a chance of GVHD, as with bone marrow transplantation.  T-cells evidently work better for patients who relapse two years or more after bone marrow transplant than for those who relapse earlier.  And it is much less harsh than bone marrow transplantation.  If this works, Jeff’s prognosis is good.

If this plan doesn’t work, a second bone marrow transplant may be considered.

I dread Vidaza’s toxicity and Venetoclax’s side effects (kidney problems!).  I would feel a lot better about it if I knew it would be more effective than Vidaza was in 2010-11.  Oh, for a crystal ball!

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?