Skin, Eyes, Lungs, Bones, Marrow and +1 Pill, -1 Pill

My sister noticed that our blog entries were more sporadic these days and she took that as a good sign.  It’s true that Jeff is doing well and there is no need for frequent updates. This was a busy month, though, so there is a good bit to report.

  

Last week Jeff went to the dermatologist at Penn.  The doctor who had been seeing Jeff evidently was a fellow; her term is up and so she is gone already.  Dr. Samini took the reins and, after examining Jeff, left the room and returned with three other doctors.  Each of them looked closely, touched his face and said, “Hmmm.”  They left the room to “discuss.”  I was not with Jeff at this visit so he took advantage of the time he was alone to text, “Getting other dr to look at my face.”  Later Jeff texted, “Not gvhd it is rosacea.”  The doctors told him that it did not present as typical GVHD or typical rosacea.  The cause is a combination of his medications and the sun.  The agreed- upon treatment is anti-bacterial gel twice a day and Jeff is to call if there is any change either way.  To me that means, “We’re not really sure, so keep us posted.”

On the return train trip Jeff texted me again, “All 4 Dr loved my hat thank your wife.”  He’d told the docs that if I loved him, I would wear a goofy hat to show support.  They insisted his hat wasn’t goofy.  He argued, “You walk down the streets of Philadelphia and nobody else is wearing a goofy hat like this!”  Poor guy.  I think it is an awesome hat because it is protecting my honey. 

The next day Jeff saw an ophthalmologist in Langhorne.  After receiving the good news that he does not have cataracts, he was turned over to the optometrist.  He doesn’t need to change his reading glasses but he needs distance glasses for the first time ever!  He only needs to wear them for driving and watching TV which became evident today when we went out.  Jeff forgot his sunglasses so he wore his new glasses with clip-on sunglasses.  That worked fine in the car but as soon as he tried to walk, he put his hands out as if to catch his balance or feel for obstacles like a blind person.  He tripped several times until he got the lay of the land – and walked more carefully.  I think it must be worse to only need glasses with slight correction because he needs three pairs of glasses, plus the clip-ons (reading glasses, distance glasses with clip-on sunglasses, and regular sunglasses).

At Penn yesterday we saw Dr. Rager first.  We reported on the dermatology and ophthalmology visits.  We also got the results of Jeff’s pulmonary function test (good) and Dexascan.  The Dexascan showed some thinning of the bone, called osteopenia, so Dr. Rager prescribed Calcium/Vitamin D.  Jeff moaned about an additional pill.  We also passed on the observation that my niece, audiologist Dr. Lauren, made - Uncle Jeff seemed to have some hearing loss since her last visit back east.  Lauren had told us that hearing loss is very common among cancer patients who have had chemo.  Dr. Rager said that Jeff didn’t need to worry about it yet, unless it was something that was bothering him.  Hmph!  I joked about people with hearing loss never thinking they have a problem.  We’ll keep watching that…

We also got the results of Jeff’s bone marrow biopsy.  Super!  His bone marrow is 99% donor marrow – that is excellent!  The biopsy report said “mildly hypocellular marrow (40%).”  When Dr. Rager saw me studying the report she said, “There is a number there that might look bad but it isn’t.”  She explained that 40% hypocellular marrow is age-appropriate and good.  The report noted “1 Blast” in his marrow.  That, too, is normal.  “We all have some,” Dr. Rager assured Jeff.  Jeff remembered when he had 18% blasts on diagnosis and 23% blasts after four months of Vidazzling.  He was relieved to hear the word “normal” in reference to his marrow. 

Dr. Rager probed a little for any complaints.  Jeff said, “Well, an infected cuticle (or “ugli-cle” or “ouch-icle”), numb feet, excessive sweating.”  She nodded and said, “I know you are doing better, though, because your complaints are fewer and less forceful.”  We agreed a lot of the side effects have diminished.  He no longer rocks when he walks because his back hasn’t bothered him in awhile.

When Dr. Porter joined us, he said, “You are in remission by every definition of the word.”  I think we need to keep hearing that because we’d been stuck on, “There is no true remission with MDS.”  I think he is referring to the AML but I don’t know how to separate the two.  With each repetition of “You are in remission,” we allow ourselves another degree of acceptance and hope, a little relief from the sense that we have to be on full-alert, watching for problems, side effects, GVHD, etc. 

Dr. Porter saw that Jeff’s face still was red and bumpy, and with a cavalier wave of his hand, told Dr. Rager, “Let’s take him off VFend.”  VFend is an anti-fungal and one of his medications that cause extreme sensitivity to the sun.  So now Jeff is up a pill, down a pill, a zero net effect!  And there is a possible benefit to his face!  That is good news to me but Jeff doesn’t care much about that.  He told me recently that his skin problems don’t bother him but the extreme sweating does bother him a lot.

I suggested that Jeff tell Dr. Porter about being on his friend’s roof this week in 3-digit temperatures.  Dr. Porter said that probably wasn’t a good idea.  I thanked him for reinforcing my opinion and, with a chuckle, told him that Jeff doesn’t always “make good choices.”  Dr. Porter said we couldn’t blame them for that and then backtracked, citing the effects of “chemo-brain.”   Maybe it is their fault! 

Jeff was surprised at how much blood they drew at this visit.  Dr. Rager explained that another chromosome study would be done.  It takes a long time so we won’t hear about that for awhile.  When we left the office we did not yet have the results of his liver function tests.  Dr. Rager did not anticipate a problem.  The steroid taper can continue!

We went across the hallway for Jeff’s immunizations:  Hib, TD, Pneumoccocal.  Jeff was told the tetanus shot would hurt and maybe cause a fever for a day or so.  It was, in fact, a little bothersome, pretty sore.  That afternoon Jeff had one of his “kaleidoscope” migraines, a stress migraine that causes “kaleidoscope” vision.  It only lasts a short time.

Jeff has had periods where he seems quiet, contemplative.  I briefly worried that he was becoming depressed with his altered body.  The NMDP literature warned us that this could happen at around one year post-transplant.  Jeff is so good-natured and strong that it didn’t take long for me to see that he was handling it all pretty well, better than most would, I think.  He did confess to me that it really bothered him that he had to rest frequently while on the roof in the heat (go figure!).  There was no reason for him to do that project this week except, I think, he was bent on proving that he could do anything he used to be able to do.  He may have had a breakthrough in realizing that he can’t - and that is o.k.  He can’t run up steps either.  Oh, well.  His need for naps… “Naps are fun!”   Well, none of those things will alter his life all that much.

In addition to all of Jeff’s tests and doctor visits this month, our family had other things going on.  We learned that Keith had been injured in a martial arts training exercise at boot camp and was relocated to the Medical Rehab Platoon.  He has an Acromioclavicular separation which will take time to heal.  When he returns to regular training, he will be put into a platoon that is on or around the same training day as he was on at the time of his injury.

Also this month, my father’s health took a sharp decline and after a week in the hospital and about a week in a nursing home, he passed away on July 17^th.  When Jeff was diagnosed with MDS, Pop said that he wished he could take Jeff’s disease from him.  Pop was ready to go and is now pain-free and at peace.

The night my sister and her daughters flew east from her home in Aurora, Colorado, for our father’s memorial service, her husband was called to area hospitals to minister to his parishioners who’d been shot at the local movie theatre.  Five of their young people were in the theatre and two of the young men were shot when they threw themselves over their dates (chivalry is not dead!).  One of the young women got shrapnel in her head.  It was hard for Tracy to be here when her husband and their friends were dealing with all of that.  Her daughter, Lissa, agreed to spend a day in Aurora before flying home to California.  She and daughter Lauren were able to support their dad and report on his well-being and the victims' conditions while Tracy stayed here an extra week. 

It was really nice to be able to spend a lot of time with family this week, remembering Pop and supporting Mother.  Prayers would be in order for the victims of the Aurora shooting, those who love and support them, my mother and my family as we mourn my father, and cancer patients everywhere.  Wow.  That’s a pretty heavy load.  Thanks for your help.

Staycation-Vacation and One-Year Biopsy

Jeff and I took some time off this week.  We combined day trips, a painting project, the Claus family picnic on the 4^th and a 3-day trip to Lancaster.  Our combo staycation-vacation was split mid-week by Jeff’s bone marrow biopsy. 

One of our day trips should actually be called an evening trip.  Jeff is on two medications which make it very easy to sunburn so we left late in the afternoon to avoid the sun.  We drove to Asbury Park, NJ, home of “the Boss.”  We ate dinner at a Cuban restaurant, walked the boards and the beach a little, then drove home.  It was very nice.

We painted Keith’s room – ceiling, closet and two coats on the walls all in one day with ample time for Jeff to nap while the paint dried between coats.  It is a small room and it is rewarding to have finished the project.  Well, we still have not had a chance to put the room back together again.  Of course, there is no hurry since Keith won’t be using it until after boot camp – another eight weeks.

The biopsy was Jeff’s one-year-from-transplant biopsy, a little late.  Drs. Rager and Porter do not expect any weird results.  This is just a milestone biopsy, protocol.  Dr. Porter even went so far as to say, “This might be the last one you’ll ever need.”  Jeff was supposed to have his “childhood” immunizations, too, but the office was very busy.  It was Tuesday the 3rd, the day before a holiday, and Jeff’s 2:30 appointment ended up being after 4 pm.  When we left after 5 pm, the office staff had all left already.  The shots are given in the chemo treatment area across the hall; we never made it there.  The immunizations will have to be done at his next appointment at the end of the month.

In the meantime, Jeff will have a dexa scan to check his bone density.  This is typically done for all women at one year post transplant and for men who have been on steroids for a prolonged period of time.  Dr. Porter also wants Jeff to have another pulmonary function test to make sure there is no lung damage from the pre-transplant conditioning.  This will be his third; he had a baseline done before transplant and one at about 8 months which actually showed better results than pre-transplant.  He also needs to see the ophthalmologist about his blurry vision which could be due to his meds (a couple of them carry warning labels about blurry vision) or treatment or… his age, perhaps.  Dr. Porter keeps mentioning how common cataracts are among transplant patients. 

Dr. Porter noted that Jeff’s rash was a little worse than the last time he saw him.  I pointed out that some spots are closer to his eyes and mouth.  That worries me a little because I have heard of cases where it gets in those places.  Neither Dr. Rager nor Dr. Porter is too concerned about it, confirming that waiting until the 18th to see the dermatologist is o.k.  I guess skin GVHD doesn’t progress too rapidly or if it does, they’ll see him sooner.

Our vacation was three days in Lancaster.  On the way out there, we stopped at Shady Maple to shop and have lunch.  The trip exhausted Jeff and he took a good, long nap at the hotel when we arrived.  We couldn’t have squeezed more fun into the next two days!  We tasted wine at a couple of wineries, toured an historic home (Suzanne Wright’s in Columbia), outlet shopped, ate at a stainless steel diner made the year we were both born, swam, etc.  We did not feel the need to eat at the Smorgasbords (besides, Jeff isn’t supposed to do buffets and, well, family style with strangers, maybe not?) so one night we had dinner at a lovely inn and another at a chain restaurant Jeff had never tried, Texas Roadhouse.  We ate Texas-style food in Amish country with a waitress named Fataweh (from India).  Gotta love cultural diversity!

We saw lots of buggies, lots of quilts, lots of farmland - soul soothing, peaceful.

Is it sunburn? Is it clogged sweat glands? No, it’s GVHD!

Jeff has been having skin issues for about a month which warranted an extra trip to Dr. Porter’s office.  Dr. Allison Rager wanted to eyeball Jeff’s face which is a little rough right now.  However, Allison was going to be in class today and wasn’t going to be in the office at all.  She called before we left the house to tell Jeff that she would miss him.  Jeff said she sounded disappointed.  She confirmed that Jeff should have labs drawn today but he’d have to settle for Nurse Heather and Dr. Porter.

At the Perelman Center we had our beverage treats at Gia Pronto and then got in line for the elevator.  Jeff started to chuckle.  “Look up,” he said.  There was a man on his knees directly overhead.  He was washing the glass roof!  We have seen workers on that cantilevered roof before but never from the vantage point directly beneath them! Cool!

We checked in with reception at Dr. Porter’s office.  The receptionist always asks, “Are you having labs today?”  And the answer is always, “Yes.”  Today, Jeff said, “Yes, they just can’t get enough of me.” 

After labs were drawn and vitals checked (good bp, good weight), Heather examined Jeff’s face.  She said, “Wow!  That is classic chronic GVHD.”  She commented that it had been over a year since transplant and Jeff remarked, “Yes, I am one of the 80%.  Each year it will get worse…”  Still, Jeff kept Heather laughing throughout the examination.  She thanked him for the entertainment which she said she needed on a Friday.  Jeff showed off his brand new UV50 shirt and his new Aussie-style wide-brim hat which are meant to keep him from burning so easily.

Heather asked more questions about when the skin rash began (probably the day after Jeff’s last visit to the Perelman Center) and when it appears worse and does it itch (no).  It is a little tender like having pimples.  She suggested Jeff see the dermatologist again but let’s see what Dr. Porter says.  We told her it was our experience that Dr. Porter is never impressed with skin conditions.  She laughed and said this would be different because it was occurring during a steroid taper. 

It turns out that Dr. Porter agreed.  Jeff has GVHD.  They will set up an appointment with the dermatologist who, we are told, has “tricks” and a cream that may enable Jeff to continue the steroid taper.  The goal is still to get him off steroids. 

Dr. Porter said, “You have something I never want to see in my office.”  Jeff was horrified.  What can be worse than what has already transpired?  With some concern, he asked, “What?!”  Dr. Porter said, “A tan line.”  Dr. Porter assured Jeff he could go deep-sea fishing with the guys from church if he takes care to lotion and cover up.

He wants Jeff to keep his original appointment on July 3^rd for his “childhood” immunizations and a bone marrow biopsy.  Jeff was not thrilled to hear that.  Dr. Porter said that Allison would do the biopsy.  Jeff asked, “Has she done it before?”  Dr. Porter said, “No, but we’ll teach her the day before.”  Jeff said, “Yeah, on a dead pig.”   

Joanne wasn’t in the office today but I emailed her to see whether she has heard anything from Jeff’s donor.  Maybe soon.    

On the way home, Jeff wondered, for the umpteenth time, whether there would be a letter from Keith.  In Keith’s middle-of-the-night I-got-to-boot-camp-safely call, he said that he would write in 7-10 days.  It has only been 10 days.  However, when we got home, Jeff checked the mailbox eagerly.  There was no letter from Keith but there was a letter from Wichita, Kansas.  That was a puzzle.  Jeff turned it over and over and asked, “Who do we know in Kansas?”  I said, “Open it.”  It turns out that while en route to boot camp, Keith met a Marine family in line at the TGIF restaurant in the Atlanta airport.  They invited him to have dinner with them and told him he could order anything he wanted.  They had nice things to say about Keith, the Marines, and their son who is serving in Afghanistan.  It was a very nice letter, good enough to get us by until we hear from Keith ourselves. 

Robin Roberts

This week we had many phone calls and emails asking whether we had heard that Good Morning America’s Robin Roberts, a breast cancer survivor, now has MDS.  When Jeff and I first heard the news, we wondered whether her announcement would encourage minorities to register with the National Marrow Donor Program.  We knew there was a great need for minorities on the registry.

When we heard that Robin’s sister was a match we hoped she would still put out a request for people, particularly minorities, to register.  And she did!  A friend at work told me she’d heard that the NMDP website was overwhelmed with requests for swab kits!  She sheepishly admitted that she still has not registered although I told her of the need for minority donors.  (Get busy, girl!)

When Jeff was diagnosed, he was told there would be no problem for a man of European descent to find a match.  Those words made our hearts sink for those who would not hear the same message.  Ethnicity matters in finding a match.  Sex and blood type do not.  Thus, Jeff’s XX blood and marrow. 

Jeff quipped that since Robin Roberts’ secondary cancer is MDS, maybe his would be breast cancer.  Oh, please…

First Bike Ride

Jeff spent some time this afternoon sprucing up our bikes.  We couldn’t go for a ride until evening because Jeff has been having skin issues, probably from his meds that cause him to burn easily.  In the meantime, we went shopping for lightweight long-sleeve shirts and another floppy hat which, hopefully, will help.  When it was nearly dinnertime, I suggested we go home from our shopping trip by way of Shady Brook farm.  I reasoned that ice cream might spoil our dinner but who would know?  With Keith off to Marine boot camp at Parris Island, we are genuine empty-nesters completely, free of the necessity to set a good example for our children.  Jeff remembered that Shady Brook Farm never makes Rum Raisin and he proposed Goodnoe’s instead.  Good idea!  Goodnoe’s did not disappoint.

By the time we got home, the sun was no longer harsh and we set out on Jeff’s first bike ride since his BMT (and mine, too).  His goal was to ride the canal until we reached Black Rock Road in Yardley.  We had been seeing and smelling smoke at home and it continued along the canal but since we did not hear fire trucks, we assumed it was wafting over the river from New Jersey.  I kept thinking it probably wasn’t good air for exercising but the smell wasn’t very strong.  We pedaled on.  We made it to Black Rock Road and then Jeff espied customers walking the canal on the other side of Black Rock Road.  We waved.  I told Jeff, “They won’t recognize you, on a bike, with a helmet, looking different than you did the last time they saw you.”  We pedaled over and chatted.  They said they had just mentioned Jeff that morning, wondering if he was ready to work.  They told him, “Whenever you’re ready.”      

We rode home and enjoyed hot dog salad.  If we had ice cream for dinner, does that mean our hot dog salad was dessert?  Here is the recipe:  pile a plate with lettuce (we used red leaf lettuce from Kerry and Theresa’s CSA), then a scoop of potato salad (ours had balsamic vinaigrette dressing), and top with a sliced hot dog (leftover from the picnic Jeff cooked for my parents).  If they gave prizes for empty-nesting, we’d be contenders for first place!

Sadly, a childhood friend of Kerry’s died suddenly, tragically last week.  Kerry, Jeff and I attended the memorial service.  During calling hours, we spoke with Debbie A., another cancer survivor from town who expressed her feeling that dealing with cancer is not so bad compared to the very sad loss of a child.  Jeff agreed. 

The sad occasion nevertheless gave us an opportunity to see people whom we had not seen for a long time.  An older couple from town, and former customers of Jeff’s, sat three pews behind us.  When we were leaving the chapel, Jane shook Jeff’s hand and said, “When I first arrived, I thought you looked really, really good and then you walked into the room!”  It was Kerry she had first seen and thought he was a recovered Jeff.  Lookin’ good indeed!  She never did say whether she thought Jeff was looking well.

The Birthdays

Jeff and I told Kim that if she made ice cream for the birthday party (hers and her dad’s), we’d pick her up in the city instead of from the train station in Yardley.  She made sour cream chamomile ice cream and blueberry sorbet.  These would complement the chocolate cake that Keith and I made.  Jeff, Keith and I had dinner at Pietro’s on South Street and then met Kim at her apartment.  We packed her ice cream in ice and headed home for the rest of the evening’s festivities.

  

Jeff noted that a lot of “crappy stuff” happened this year.  I recalled that he was the only one at last year’s party who didn’t seem to be enjoying himself.  Kim remembered that we had served Tastykake krimpets at the hospital.  I remembered that Kim and I left the hospital and went to Pietro’s to celebrate her birthday while the rest of Jeff’s new marrow flowed into him.  Funny!  It was by chance that we’d eaten at the same restaurant this year – this time with Jeff.  What a difference a year makes!

We enjoyed our ice cream and cake (one pink candle representing Jeff’s year-old marrow and two yellow candles for the 26-year-old) under the chili pepper lights in the screen house and then we headed for the hot tub.  Some of our neighbors set off illegal fireworks – a regular holiday occurrence which ordinarily irritates me.  Tonight, between the joy of our celebration and the serenity of the hot tub, the fireworks seemed appropriate.  Even Giblet was in a Zen state and was not overly bothered by the noise.  Fun was had by all! 

Day 363 –Team Bist du Stark

This will be our last blog entry which is marked by day number.  I have already begun to say that Jeff is “one year out from transplant” which is the lingo in the biz, if you want to know.  It is so exciting!  Jeff has gotten off easy in one way, at least:  no return trips to the hospital, something we were told is not uncommon during the first year.  I shouldn’t count chickens before they hatch but things look good for these remaining three days.

Kim sent us this official picture of Team Bist du Stark from The Dude Hates Cancer bowling event last August.  If you were there, or if you were one of us who were anxiously awaiting the return of our young people to the safety of hearth and home, you will remember that the event took place during a terrible storm.  Soon Kim will be organizing this year’s team so stay tuned.

It has taken a team to see Jeff through this last year and a half.  I would not have wanted to endure this journey without the support of family and friends.  I know Jeff feels the same way.  We have been lifted and embraced by so many people in many, many ways.  Some prayed, some cooked, some mowed, some talked, some listened, some drove, some hugged, some cleaned, some visited, some sent cards and their well wishes.  Others collected blood, read lab reports, counseled, prescribed medications, cleaned hospital floors, administered medications and then watched for side effects, performed PT.

 And one gave her marrow.

Three cheers for Team Bist du Stark!

xoxoxo

Day 354 – No Longer a Part of Our Vocabulary

We met Jeff and Marie R. at Peddlers Village on Saturday.  We enjoyed a nice stroll, a little shopping, good conversation and then we headed to Stockton to have dinner at Meil’s.  Over dinner, the conversation naturally turned to the two Jeffs’ hospital experiences.  One of us mentioned the bacteria that they each picked up in the hospital, the nasty one that caused diarrhea.  None of us could remember the name of it!  We marveled that a year ago, it was very much a part of our vocabulary and now we had trouble coming up with its name!

We ate awhile, talked some more, then someone said, “It starts with a D, I think.”  We ate some more and talked a bit and then came back to it again.  I said, “I think it might start with a C.”  That prompted Jeff R. to come up with it, “C Diff!”  It starts with a C and a D.  It is amazing that the bane of the hospital experience, the reason for delays in returning home, was so easily forgotten – at least its name was, not its symptoms and not its smell.

Tonight we attended a networking group meeting at Gilda’s Club.  The conversation turned to ports and Jeff described his Hickman catheter and the care that was required in keeping it clean and free of clogs.  He was trying to think of the name of the port that goes in the underarm area.  None of us could think of it until Connie, a survivor in the group, mentioned her PICC line.  That’s it!  Jeff had a couple of bad experiences with PICC lines at Aria and yet we could not come up with the term.  He blamed the brain lapse on the phenomenon known as “Chemo Brain.”  I think it might be a sign that enough time has passed for his treatments and transplant to become distant memories.

Also in attendance at Gilda’s Club was an MDS patient and his wife.  Both have lovely Manchester accents.  They seemed as happy as we were to have found another MDS patient.  He has a teleconference scheduled for tomorrow with his oncologist at Sloan Kettering during which he hopes to learn how close he is to his transplant.  Jeff felt like the ol’ pro, able to offer useful information about what to expect.  After the meeting we exchanged phone numbers.  Please pray for this man and his wife as they await the next phase of treatment as well as for the medical professionals who see to his care.

Jeff’s dream of owning a hot tub has come to fruition.  He beautifully engineered the hot tub move from Kerry and Theresa’s house in Langhorne to its new home in our backyard.  Jeff told me it wouldn’t be difficult to move but I thought it was worth paying $800 to hire pros.  He built a crate around the bottom half (as it stood on its side) which enabled our crew – Jeff, Kerry, Keith and friends Gerry and Pete – to grab hold of it.  Silly me!  I’ve got a pro in residence!  Pete’s wife, Annie, took pictures of the process.  It isn’t hooked up yet.  Mark says that having a hot tub that isn’t hooked up is worse than having no hot tub at all!  Maybe by this weekend we’ll be chillin’ in the tub!

Day 345 – Our Superhero

We expected to hear from Dr. Sehgal on Thursday with Jeff’s liver function results but she didn’t call until Friday morning.  By then, his fever was 99.8 and his cold symptoms included a juicy, phlegmy cough and zapped energy.  Jeff called me at work to tell me about the phone call.  Good liver function!  He can continue the slow taper of Prednisone.  Super!

“Did you ask her about your cold symptoms?” I asked him.  “No,” he replied.  He reminded me that Dr. Sehgal had told him already that he could survive a cold.  She had said to call if his fever got over 100.4.  Jeff was afraid that a cold would hang on forever just like his cuts and scrapes that take a long time to heal.  If he was worried, I was really worried.  It was making me nervous to see him so tired and discouraged. 

I had planned on leaving work early to get my haircut by my niece, Amy Lyn, at my sister Judy’s house.  Jeff was going to come with me to have dinner with the Rillings.  By early afternoon, Jeff called to say he wouldn’t be able to go but that I should still plan to go without him.  He had gone to Home Depot to gather supplies for his next project, a pad in our backyard for the hot tub he bartered from Kerry and Theresa.  Evidently, he began shaking when he was exerting to load stone pavers onto a cart.  He was unable to finish loading his materials and asked for help from a Home Depot employee.  I asked Jeff if I should come home.  He said, “No.  I’m just in bed.”  I wrapped up my work early and headed home with Keith.  As we approached the house, we could see that Jeff had gotten the truck and trailer into the driveway and left it as he would not have normally.  Keith would have to shuffle things around to get the trailer and truck in the garage.

We found Jeff miserable, shivering under the covers.  I took his temperature, 100.4!  “We’re calling the doctor,” I told him.  We have Dr. Seghal’s number in our cell phones and she answered right away.  She asked questions about his breathing and his ability to walk.  I could only report that he was in bed, unable to answer these questions.  Finally, he muttered that he could walk.  Dr. Seghal felt that it was cold symptoms and said the hospital would have no magic cure for that.  The virus would pass, she assured me.  I tried to let her words calm me but I felt better when she gave this measurable instruction: “If his fever goes over 101, go to the ER.”  Ok.  We could do that.

I discussed Jeff’s care with Keith and left the house for my haircut and dinner with the Rillings.  It was good to see Judy, Mark and – miraculously – all three of their beautiful daughters were at home.  I got my hair cut.  Judy was next in the chair and then Sarah for a practice ‘do for her Kutztown graduation.  Fun!

After a great visit and good dinner, I headed home to find Jeff sitting in a chair watching TV.  Whew!  He did not look great but he was upright.  His temperature was 99.9.  Better. 

Saturday morning I awoke with some concern about Jeff’s fever.  Selfishly, I did not want Jeff’s illness to spoil my plans to go to the Titusville flea market with Kim.  This makes me sound so cold but honestly my concern was for Jeff and Kim, too.  Kim had come up the night before to stay over so we could leave early in the morning.  She would have understood if we couldn’t go but I did not want to disappoint her.  And, of course, I truly hoped Jeff was better.

My heart sang when I heard Jeff get up, go downstairs to let the dog out and unload the dishwasher.  I hoped he wouldn’t wake Kim up with his noisy chore.  The day turned out to be a good one all around.  Kim and I got to our flea market and did some shopping.  Jeff and Keith were able to prepare the hole for the hot tub pad.  Keith said his dad sweat like crazy with exertion but admitted he was beat from the activity, too.  Late in the afternoon, Keith asked whether I’d heard how high his dad’s fever was the day before when I was out, 102.4!  What?!  Jeff said he had told Keith it didn’t matter if his temperature was 104, he had no intention of going to the hospital.  I guess it was a good call because he was a whole lot better on Saturday. 

I am glad that scary episode is over.  Jeff’s cough persists but the fear of a return to the hospital has passed.  Just like old Jeff, he seems to have gotten a mini-version of a virus; he was inconvenienced for only part of a day.  I can’t help but feel that he somehow willed his fever gone.  He says, “It’s like I’m a superhero.” 

Day 341 – Three Z’s and Familiar Faces

This rainy morning neither Jeff nor I was anxious to get out of bed.  Jeff woke up with a phlegmy cough.  He sat up to take his early-morning, empty-stomach pills and asked me if I would make him a cup of tea with honey.  I wasn’t quite ready to be fully awake but his request and that cough worried me a little bit.  I brought the tea and we lounged awhile longer.  I didn’t have to get up quite as early as usual since we were heading to Philly to see Dr. Porter.

As we waited for the train in Yardley, Jeff noticed Brian, a man he knew from Train Club.  In fact, a few months ago we had discovered that I knew his wife; we both work at Rider University.  Jeff greeted Brian and his son as we boarded the train and then we lost track of them. 

The train ride was difficult for Jeff.  His stomach was upset and he was very tired.  When we arrived at University City and began walking towards the Perelman Center, we noticed Brian and his son about half a block ahead of us.  We wondered where they were headed - one of the hospitals, most likely.  I walked briskly along until Jeff said he couldn’t keep up.  He was really dragging his feet this morning!  I felt bad for him and matched my pace to his.

As we approached the front of the Perelman Center, there were Brian and his son again!  Well, one of them, it would seem, is a cancer patient.  Our hearts sank a little at the realization even as we entered the building that inspires hope.  By the time we went through the revolving door, the two men had disappeared into an elevator. 

Upstairs in the Hematology-Oncology waiting area, Jeff put on a mask in case his cough was contagious.  He said the smell of it brought back the memory of last summer when he couldn’t leave the house without mask and gloves.  Joanne, the nurse who coordinates donors and recipients, met us in the waiting area with the contact release form for the National Marrow Donor Program.  This starts the process that will, hopefully, result in meeting his donor someday.  Joanne is 90% sure that the donor’s center will allow contact one year after transplant but some centers, she said, have a two-year waiting period!  She explained the risks of releasing contact information:  you are no longer anonymous, you might find that you don’t have much in common with your donor, the NMDP cannot stop unwanted phone calls or letters or unwanted media attention.  Nevertheless, Joanne said that she never had a patient who was sorry to have known his donor. 

Dr. Allison Rager Sehgal (we finally got the correct spelling of her married name) took Jeff’s update.  Jeff had a low-grade fever and, although Allison was not concerned about it, she suggested watching it for awhile.  I told her I was concerned about Jeff’s foot-dragging fatigue and we gave her a litany of annoying side effects of the steroids and Mycophenolate (CellCept, the immunosuppressant).  She confirmed that most of his symptoms are, in fact, side effects of the drugs.  She recommended seeing an eye doctor for his blurry vision.  It seemed as if her fixes for everything were things that began with Z: Zofran for the nausea, Zantac for upset stomach, Zyrtec in case his cough is due to allergies.  Jeff figures that he should be “almost done” since he has taken medications from Ativan and Ambien to Zofran and Zantac. 

Dr. Porter joined us and was impressed with Jeff’s report that he’d installed 1,000 square feet of hardwood flooring at Kerry and Theresa’s house.  I described how he hoisted himself up from the floor using a piece of flooring and Jeff bragged about how many, many times he’d had to get up and down off the floor.  Dr. Porter said it didn’t matter how difficult it had been, it was good that he did it. 

Jeff asked Dr. Porter whether he could work.  Dr. Porter said it would depend on how Jeff feels.  The fatigue and weak legs will take a long time to improve.  He guessed the bruising will be more of a problem than the bleeding.  Jeff also asked whether he’d have to be on steroids or CellCept forever.  Dr. Porter hopes not and said it is too soon to predict whether he’ll have chronic issues with GVHD.  Dr. Allison had suggested speeding up his steroid taper but Dr. Porter said he would be uncomfortable trying to rush things because of the problem Jeff had the last time he got down to 20 mg a day. 

We left the office with tentative plans for a very slow steroid taper, pending lab results on Jeff’s liver function which will probably be available tomorrow.  Dr. Porter will see Jeff again in early July.

We walked to the Potbelly for lunch, taking a shortcut to save Jeff’s legs.  As we sat eating our lunch, Jeff said, “There’s Charlene!”  Sure enough, there was his cousin Kathy’s partner, Charlene!  This is a day for seeing people we know, I guess.  We both shouted, “Charlene!”  She and her sister snaked through the line near our table and we learned that her sister has Myeloma, I think it was, and is expecting to have a PBSC (Peripheral Blood Stem Cell) transplant at some point.  Her sister wore the tell-tale signs of recent chemotherapy treatment, a head scarf and hollow eyes, yet she looked beautiful.  There is something about the way cancer patients seem to have signs of their endurance written on their faces while undergoing the most brutal of treatments.

On the way to the train station, Jeff seemed buoyed by his lunch and the reassurances of his doctors.  He joked, as I lagged a few paces behind him, “What’s the matter?  Having trouble keeping up?”

Jeff’s exhaustion began to hit him again while we waited for the train.  Once we were on the train, I asked him if he was going to sleep.  He shook his head vehemently and insisted, “No!” like an exhausted child.  He always does this before he falls asleep sitting in a chair.  Within a few minutes he was dozing.  We had planned to stop at the drug store for his meds (including the three Z’s) on the way home but he decided we’d better head home so he could continue getting his Z’s – sleep, that is.  He wished we could have taken a sleeper car for the hour-long trip home.  Poor guy. 

Today is a good day to pray for all cancer patients and those who care for them.  Pray for Charlene’s sister and Brian C. and Debbie A. and Pat O. and Melanie B. and Bob Y. and Jeff and…