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!