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…

Day 336 – Another Fingernail Bites the Dust

We have been giving some thought as to how to celebrate Jeff’s first birthday.  We haven’t settled on a menu but we will definitely have chocolate cake.   We’ll invite family and friends for a birthday bash!  The Big Day is just one month away!

In the meantime, Jeff is dealing with some nasty side effects that are most likely attributable to his immunosuppressant, Mycophenolate.   He bruises and bleeds easily, has lower back pain that causes him to rock to one side when he walks, experiences blurred vision frequently, and he seems to cough a lot especially when he tries to sing. 

Some of his side effects – hand tremors and the swelling in the balls of his feet - may be caused by more than one of his medications.  And, he lost another fingernail.  He continues to joke that now that he has his new bone marrow, he just needs a new body.  For all that, he is spending his days productively.   Jeff’s next appointment with Dr. Porter is Wednesday.  We have a lot to report.

The spring term has come to a close and I finished my Speech Communication class with a commemorative speech about Jeff.  The assignment was to commemorate someone you know – or had known – from a prepared manuscript.  Throughout the course, we students had gotten to know each other pretty well through our speeches and classroom exercises.  We had developed a warm camaraderie.  When I wrote my speech, I was afraid that I had not captured Jeff’s essence.  However, after delivering my speech, my classmates were especially nice to me.  Their critiques were kind and favorable.  In the hallway during our break, several of my classmates gushed about how they felt they really got to know Jeff.  So I did capture Jeff well!  When I got home, I told Jeff that my classmates liked me more for having introduced him to them!

Here is the opening paragraph of my speech.  I am debating posting the rest of the manuscript.  What do you think?

Joy Island

There is no one I would rather be stranded on a deserted island with than my husband, Jeff.  I have always said this about Jeff, and for good reason.  He is pleasant under almost any circumstance, is a world-class problem solver, can engineer anything, loves a good challenge, AND maintains his good sense of humor always.  His McGyver-like skills would ensure we would eat on that deserted island and I know we would have more than adequate shelter.  He would keep us laughing even as we faced danger.

Day 329 – Labs and PT Updates

Jeff’s labs this week were good.  A slow steroid taper can continue.  What a relief!

Last month, PT Mike told Jeff that April’s visit would be his last since he wasn’t making any progress.  Jeff knew that this last visit would involve a lot of testing and measuring.  He wasn’t looking forward to it.  PT Mike was pleased and surprised to see that Jeff’s passive motion was 15 degrees better.  This improvement warrants more sessions!  Jeff needs to continue doing his exercises to train his muscle to keep the scapula in place.  His scapula still pops out but not so much as it used to do. 

Jeff and his helpers have finished installing hardwood floors at Kerry and Theresa’s house.  Projects there continue to keep him busy.  Jeff bleeds and bruises easily.  Nevertheless, he is ready to start working some.

Jeff's Easter Letter to his Donor

Dear Blood Sister,

Thanks for your letter dated July 27, 2011.  I just received it last week.  I don’t understand the delay but I was relieved to hear from you.  Receiving your letter so close to Easter when we are thinking about rebirth and resurrection – well, it was moving.

It seems like we have many things in common.  Although I won’t ever plan to do a triathlon, I do camp and hike and bike ride.  The closest I will ever get to a marathon is cheering for my daughter-in-law.   She is training for her first – and only, she says – marathon.  I am also strong-willed and have a good sense of direction.  My wife and I recently went to a concert and she noticed I could clap to the beat of the music.  That was something new.  Could that be your marrow at work?

Your marrow still wants to fight with my liver so I am on steroids and immuno-suppressants to try to help that (GVHD).  I feel fine although I am not my old self.  I am a carpenter but I have not worked since October 2010 when I was diagnosed and started treatment.  In the last month I have started small projects at my son and daughter-in-law’s new house.  Sometimes I am pooped when I come home!  I have been able to volunteer some time at church, too. 

I was told that I could meet or contact you directly at our one-year anniversary, if both of us are agreeable.  What do you think?  I hope it doesn’t take eight months to get your answer.

We have shared your letter with many family and friends.  We should probably buy stock in Kleenex.  There were many censor marks which made your letter look a little like a ransom note.  Even the name of your baby cousin was censored.  My sister-in-law has dubbed him “Luke” for the meantime so that he is not nameless to us. 

We have three children: the 28-year-old who got married last summer (to a lovely girl, the marathoner-to-be), a 26-year-old daughter who lives in a nearby city, and our 20-year-old “baby” son who is a college student. 

We continue to pray for you and your family.  We are thankful for your baby cousin for inspiring you, the patient hero who held the marrow drive where your DNA was collected, your aunt who got the call from the registry when all your other contacts had moved, and you for answering my need.  We pray that your generosity inspires others to register their marrow, too, so that your little cousin will continue to impact many lives.

Happy Easter!

Your Blood Brother

A Note About Commenting on our Blog

Some of you have reported having problems commenting on the blog.  Kim tested posting a comment anonymously and from her gmail account.  Both worked fine.  If you have problems, let me know how you are choosing to post your comments.
Thanks.

Day 308 – The Mystery Woman Speaks!

Let’s first get medical news out of the way.  Jeff’s labs this week showed better liver function and Dr. Rager laid out a slow taper for Jeff’s Prednisone, 5 mg less every two weeks, and wants labs done again in a couple of weeks.  A lower dose of steroid is good because Jeff is having some sleep issues and all the other lovely lovelies of steroid use.  (He was even beginning to get a little cranky again although I did not mention it to him.)

Now for the exciting news!  Joanne at Dr. Porter’s office faxed a three-page letter from Jeff’s donor to my work fax number – after I had left the office for the day!  No problem, I was returning to campus for class; I’d sneak into the office to get it.  Well, I wouldn’t exactly sneak in since I would probably have to call facilities and let them know what I was doing.  Anyway, none of that was necessary because my co-worker brought the letter home with her and I only had to pick it up from her house which is one block from ours.

The letter is dated July 27, 2011!  How odd!  Mystery Woman mentioned receiving several of our letters so what was the delay in our receiving hers?  If we had received this letter last summer, it would have alleviated some concerns we had about Mystery Woman’s recovery.  Jeff often wondered whether his donor was reluctant - someone who had joined the registry years ago, forgot about it and, perhaps, regretted being called.  Oh, how nice it would have been to have this wonderful letter last summer!

Just getting the letter was all so very exciting but I guess you are wondering what Mystery Woman had to say.  The letter began, “Dear Blood Brother,” and described her inspiration, a baby cousin who died of Leukemia when he was 28 months old and she was 15.  The little boy’s sister had twice given him bone marrow (I want to know more about her – How old was she each time?  How was she influenced by the experience?)  Mystery Woman’s mother helped her with her grief and told her, “God has plans for all of us and we may never know the reason but {censored cousin’s name} had an impact on many lives…”

Mystery Woman is a triathlete who met her husband, a marathoner, while both were volunteering at a {censored organization name} charity event.  She considers meeting her husband, as well as the births of each of their two children, among the many blessings that derived from her young cousin’s short life.  Ten years ago she and her husband (they were not yet married) were at an {censored name} event.  One of the runners was a cancer patient in remission who was holding a bone marrow drive.  They decided to stop by and have their cheeks swabbed.  Nine years later, when Jeff needed her, she had moved and changed phone numbers as had all of her contacts.  Her aunt got the word that she was needed. (Which aunt, inquiring minds want to know?  Perhaps it was the mother of her little cousin?  Or was it another aunt?) 

Mystery Woman addressed our silly question, “Do you have any useful traits that Jeff might gain from your marrow?”  She is not a dancer but can “hold her own.”  She says she has a great sense of direction and is stubborn, or “determined” or “willful” as she prefers to think of it.  Jeff says those are traits he has always had, too, so he is happy to know that they have a lot in common.

She writes that we may have felt that she gave Jeff a gift but she is honored to have been able to help our family and allow her little cousin to live on.

Beautiful!  We loved Mystery Woman before and even more so now that we read her kind words.  She was not a reluctant donor at all – nor a prisoner, as it turns out.  She was an enthusiastic donor, still felt good about it afterwards and the tone of the letter makes it seem likely that she will want to meet us when it is permitted.

By the time I had collected the letter from my co-worker, Jeff had returned to Kerry and Theresa’s house to finish up installing oak flooring in their upstairs hallway in preparation for Kerry’s crew this weekend.  So I had to read the letter to him on the phone.  He put me on speaker phone so that Kerry could hear it, too.  About half-way through I told the guys, “Hold on a minute.  I’m dripping on the letter.”  I dabbed my eyes and blew my nose.  When I got back on the phone, Kerry said, “Maybe if you drip on one of those black marks, we can read what is underneath.”

Kerry is busy trying to see if the censor(s) missed any identifiers.  He considers it a challenge.  Jeff and I are contemplating the many things we want to say to Mystery Woman in our next letter.  We wonder what she thought when she read our letters which never acknowledged hers! 

Mystery Woman and her family began praying for Jeff and our family as soon as they learned Jeff needed her.  We began to pray for her and her family at that time as well.  I always thought it was likely, at age 35, that she was a mother of young children.  Her children were one and three years old at the time of Jeff’s transplant.  Now that we know some particulars, we ask our team to continue to pray for her and her family.  Pray that their kindness and generosity are so contagious that others are compelled to join the bone marrow registry as well so that more and more people can potentially be helped.  Pray that Mystery Woman feels our gratitude every day and let her know that we value the short life of the little boy who set her on the path that intersected Jeff’s.