Bald Heads, Thumbs, Bird Poop and Cootie Blood

Jeff’s fans have been sending positive greetings, vibes and prayers as his admission day approaches.  I enjoy rubbing his bald head “for good luck.”  Our friend, Tim, who is working in Germany for awhile, writes, “we will be pressing our thumbs (that's what they do in Germany instead of crossing fingers for luck)!”  When we were at Longwood Gardens on Friday (squeezing in as much fun as we possibly can), a bird pooped on Jeff’s jacket!  That’s good luck, too! 

I had occasion to see our family doctor last week.  He and his intern were asking about Jeff and the intern noted that Jeff’s blood will have two X chromosomes since his donor is a woman.  Dr. Peck was fascinated by this and, of course, jokes were made at Jeff’s expense.  Jeff says, “Yeah, I know.  I’m gonna have cootie blood.”

It's a Go-Ahead!

We heard from the transplant coordinator today.  She said Jeff’s blasts were in the 12-20% range (usually the report is more specific than that!).  Dr. Porter says Jeff can go ahead with the transplant.  Jeff noted how weird that is since it puts him about where he was at the time of his diagnosis and couldn’t he have been spared those other horrid treatments.  I guess they had to do something while waiting for a donor.   

There is, however, another delay – just one day.  He’ll be admitted to the hospital on Sunday, May 22, with transplant occurring on Friday, May 27^th.  Kim’s birthday!  Kim says that is a much better day for Jeff’s new birthday than Friday the 13^th!  I think we all agree.

The plan currently is to use donor #1.  We hope she is feeling a whole lot better.  We like to think of her as someone who would be disappointed if she doesn’t get the opportunity to help her mystery man (of course, we know him; the hero of our story, Jeff). 

Today Sandy, a co-worker, told me that her friend had recently been diagnosed with several cancers simultaneously:  ureter, kidney, prostate and lung.  Sandy said Art was a health-nut 25 years ago – perhaps before it was fashionable – and ever since.  Cancer doesn’t care, it seems. 

On Saturday, Theresa and Kim went with me to the King of Prussia mall to shop for MOG dresses.  I came home with two but, of course, I only need one.  A decision must be made…  It was so much fun to spend the day with the girls!  I love them for helping me feel pretty and to focus on the happy occasion which is to come after Jeff’s transplant. 

Prayer requests:

For Sandy’s friend, Art, for Jeff and his donor, Dr. Porter and his team and I could use some prayers for patience, if you wouldn’t mind…

News Flash: Mystery Woman is Sick!

Today, while waiting for Dr. Porter in the examination room, Jeff noticed a treatment tray in the room which was a big clue that he would be having another bone marrow biopsy.  He had hoped he wouldn’t need another one before his transplant.  The transplant coordinator, Jackie, and two other nurses came into the room (one was a student nurse) and began Jeff’s preliminary exam.  Heather wanted to confirm that he was not taking any medication and we reminded her that on Sunday he began taking Bactrim in preparation for the transplant.  She said, “You’ll need to stop that.”  Our hearts sank.  

We found out that Jeff’s donor has developed pneumonia or bronchitis.  Even Dr. Porter isn’t allowed to know too much about the donor so we will not get an update on her condition until close to the new transplant date.  Jackie gave us a new calendar of events and told us that a second donor will be lined up for the same dates so that if Mystery Woman #1 isn’t cleared for donation, the second donor will be used.  The new, tentative admission date is Saturday, May 21^st, with transplant on Thursday, May 26^th (the day before Kim’s birthday). 

Dr. Porter did not want to wait another two weeks without finding out what Jeff’s marrow is doing.  That was the reason for the biopsy.  His gut feeling is that everything is fine and we will be able to proceed with the new plan.  However, if the biopsy shows too high a percentage of blasts, another course of traditional chemo would have to be done instead of proceeding with the transplant.  He doesn’t think that is the case but it would be “poor form” not to check it.

Jeff has been grilling like crazy to savor as much summer flavor as he can before his post-transplant hibernation.  The delay will give him more time for grilling and restaurant meals.  We’ll have to have a picnic, I think.  Perhaps our traditional Memorial Day picnic will occur a little early this year. 

Prayer Requests for the Anonymous

At Christmastime, two college-age siblings from our church asked what they could do to help.  I told them they could visit bethematch.org and register to be bone marrow donors.  I challenged them to ask five friends each to do the same.  Their mother sent a card this week in which she told us that Jim and Sarah are each organizing “Be the Match” campaigns at their respective schools!  Let’s pray that their campaigns are successful and that many people are helped by their efforts.  God bless Jim, Sarah, and all donors everywhere!

Our patient-care class on Thursday was to have been attended by two other patients.  Please pray for the one who could not attend because he/she had to be hospitalized.  And, even more sadly, for the one who was not permitted to attend the class because he/she did not have a support person to accompany and support him/her.  That anonymous person is haunting my thoughts.  Thank God our family feels extremely supported through this ordeal.  Many prayers are needed for those who do not have the blessing of loving care.

Pray that Jeff’s mystery woman stays well and safe, that she knows we are thinking of her and appreciating her generosity, and that one day next year we will meet her so that we can embrace her and tell her these things face to face.

The Longest 100 Days

Kerry, Judy, Jeff and I attended the mandatory pre-transplant patient care class on Thursday.  In addition to fixing Jeff’s admission date (May 8^th), we learned a lot about minimizing exposure to bacteria in the first 100 days post-transplant.  Here’s a fraction of what each of us learned:

Amy - Jeff has to rebuild his immune system post-transplant.  He will need to get all his childhood vaccinations again.  We need to train Giblet not to sleep in our bed.

Kerry – was glad to hear his dad can eat home-cooked meals as long as they are thoroughly cooked and then eaten or frozen immediately.

Judy – was horrified at the care that must be taken in feeding Jeff post-transplant.  All the Dos and Don’ts are overwhelming. 

Jeff learned a lot:
1.  “They must be wrong about the no-grilling rule.”
2.  He learned that he is not allowed to clean or do dishes post-transplant.  He says, “I always thought doing housework could kill you.”  (Amy notes that he is, however, allowed to empty the dishwasher of clean dishes.)
3.  He is disappointed he won’t be able to swim this summer.  He’ll have to stay out of the sun and he’ll have PIC lines that will need to be kept clean.
4.  He will definitely have to wear a mask at the wedding.  We will draw a mustache on one.  He wants an assortment.  For example one will have a smile, one will have a surprised O… 
5.  100 days is a long time to go without a restaurant meal.
6.  It takes three hours to clean the hospital room on transplant day (Friday, May 13^th, his new birthday).
7.  We have to pack his clothes in zip-lock bags so they can be wiped down.  It will be like packing for camp!

Before we left Penn, Jeff saw an ophthalmologist about his vision issues.   The diagnosis was ocular migraines with no headache brought on by stress.  No treatment required.  Woohoo!

We had a tour of the transplant floor.  There are 29 beds.  Many have great city views although a few look out to a brick wall.  There are wood-look floors and some wood paneling so Jeff might not suffer the same sensory deprivation that he did at Aria. 

It was a looong day.  We got home at 5:30 p.m. and found our Dinner Club friends in the driveway delivering dinner!  God Bless George and Charlotte!

Today Jeff was back at Penn for a biopsy of his skin rash.  The dermatologist felt it was some sort of eczema and was not cancer-related.  He still needs to see the oncology radiologist next week.  

Prayers, please, for Jeff's 35-year-old mystery woman, his donor.  Also, pray that Jeff continues to gain strength with these extra couple of weeks prior to his May 8th admission.

A Princely Sum

The bill for Jeff's hospital stay came.  It was 20 pages long.  Jeff say we can't really call that a bill, "It's a William."  

Thank God for good insurance.

Pre-transplant Plumping

In an effort to put pounds on, Jeff selected his favorite high-calorie foods for his pre-transplant plumping plan.  We accomplished a lot this weekend:

Friday:  Egg McMuffins for breakfast, Peruvian-Mexican Cuisine for dinner

Saturday:  Greasy-spoon breakfast, doughnuts for lunch, Chinese for dinner

(Thank goodness for the fruit basket that Kim’s boss sent.)

Sunday:  Fritz’s cinnamon rolls and sticky buns for breakfast, Chinese leftovers for lunch, our neighbor’s mac and cheese for dinner

Results since home from hospital:  Jeff up 10 pounds, Amy up 5

Amy plans on returning to the pre-wedding diet once Jeff is hospitalized.

What Not to Say

A friend, a cancer survivor, from Amy's work shared this article.  We found it interesting and it might be helpful if you are someone who truly doesn't know what to say.  (That would have been me before experiencing this role of caregiver.)  In addition to the tips in the article we would add that it is okay to say, "I don't know what to say."
http://www.dallasnews.com/health/cancer/headlines/20110404-what-not-to-say-to-a-cancer-patient.ece?ssimg=155662#ssStory155663

Egg-cellent News!

Last Wednesday Jeff had another bone marrow biopsy.  The results were not perfect but good enough to proceed with plans for a bone marrow-stem cell transplant Easter week or in early May.  We will find out by early next week how soon the donor can be prepped.

Today we met Joanne, Dr. Porter’s coordinator of non-related matches, who has been working on selecting the best donor out of the four potential ones.  She alone knows the identity of Jeff’s donor.  We were allowed to learn only two things about the donor:  it is a 35-year-old female.  I haven’t been crying excessively lately but somehow hearing even those two minimal details about the donor brought tears instantly, joyfully to my eyes.  We can write to her anonymously – and she to us - through Joanne during the first year after which we can know her identity, if she agrees.

Dr. Porter once again outlined the steps toward transplant and the transplant itself.  Jeff expressed his concern that the chemo and radiation would be as bad as what he experienced in March.  Dr. Porter candidly said, “It’s worse.”  He encouraged Jeff to put on weight and build his activity level.  Basically, it’s as if he’s in training.

We also met Jackie, the nurse who schedules the patient care classes.  She treated us a little like VIPs, giving us tips and telling us what we will be learning in class.  The class is mandatory prior to transplant. 

Jeff asked Joanne whether we could have requested to know two different details about the donor like 1) age and 2) can he/she dance?  Joanne doesn’t know whether the donor is a dancer.  Perhaps we can ask that in our first letter to her. 

Typhlitis Belly Report:  down to 40” from 44”, normally 38”

Weight: lost 25 pounds during hospital stay, 5 pounds gained back so far

Prayer request:  for our lovely 35-year-old female donor

Eggs and Arsenic

Our first day spent all alone, just the two of us, and we both felt drugged.  I guess “wasted” would describe it pretty well.  I slept eight hours last night for the first time in many months.  Jeff didn’t sleep as well as I did but it was better than sleeping in a hospital.  For all that good sleep, we still had trouble dragging ourselves out of bed.  A late breakfast in bed gave us the energy to get up. 

We settled in the living room and I read aloud from The Horseshoe Curve: Sabotage and Subversion in the Railroad City, a gift to Jeff from the men’s group at church.  After only four pages, I noticed Jeff had fallen asleep on the sofa.  I put down The Horseshoe Curve and read my own book for awhile, until I realized I was falling asleep, too.  So back to bed for me.  When I woke up, I felt drugged, so much so that I briefly considered the possibility that our heater was giving us carbon monoxide poisoning.  It wasn’t. 

Later, Jeff spoke with his sister, Debbie, on the phone.  He told her he was amazed that he had slept for four hours in the middle of the day, so soon after breakfast.  He said he wondered if I was drugging him.  She asked what I made him for breakfast.  He said, “Eggs and arsenic.” 

My niece, Amy, had commented a few months ago that Jeff and I were behaving like 15-year-olds since his diagnosis: touching each other excessively, looking each other in the eyes, etc.  It has become our custom to say things 15-year-olds might say like, “You’re the best,” with the response, “No, you’re the best.”  And, “I love you,” “I love you more.”  And now, “You drugged me!”  And “You drugged me more!”

Interestingly, this was the first day since his return home that Jeff did not require the medication for pain which puts him to sleep.

Typhlitis Belly Report:  down to 42” from 44”, normally 38”