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?