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…