Change of Plans

At church on Sunday there was a fair amount of hacking and coughing going on.  We decided it would be best to skip crowded church services with lots of kiddies.  Jeff's white blood cells are too few to contend with those little darlings with their sneeze spray and germs brought home from school.  December 26th will be a low Sunday; we'll go then.  Keith was supposed to come home this weekend but he has been doing nothing but sleeping and taking finals most of the week.  He is being treated for pertussis and I told him he couldn't come home until he isn't contagious.  He has to be out of the dorm by 3 p.m. Tuesday.  He should be well by then.  We love you, Keith, but you can't come home yet.

It had just occurred to me that we probably would have a quiet New Year's Eve and not make any plans when Kathy called to invite us to their house for dinner and game night.  She and Ken had decided that instead of a big bash on New Year's Eve, they wanted to invited Jeff, me and another friend for that evening.  Kathy suggested 8 p.m. and I told her it isn't likely Jeff will last until midnight.  She said, "How about 7 p.m.?"  We settled on 6 p.m. and although I feel a little guilty that we'll probably ditch them before The Ball falls in Times Square, I know they will understand.

Our Annual Christmas Caroling Party with the Milionis family was last night.  Annie called in the morning to very nicely, very politely un-invite us.  She said many of her guests were recovering from colds, Gerry was feeling like he was getting sick and she would feel terrible if Jeff caught anything from the carolers.  I told her we'd get in the car and track them down on their route to listen and join their singing.  She said they had already decided that if we couldn't come, they'd carol at our house.  I asked if it would be alright if we sang along since Jeff has been warming up his voice for the occasion.  Four carloads of carolers arrived around 8:30 p.m.  They sang one carol then they took our requests.  Jeff asked for "We Saw Three Ships" and I wanted "Here We Come A-Caroling."  Another tune or two and off they went, leaving us with hugs from Annie and Pete and a loaf of Annie's sausage bread, Jeff's favorite dish from the annual caroling party buffet.  The group never stayed at one house so long.  We couldn't make out their faces because the spotlights on our house illuminated us but made it impossible for us to see them.  We did, however, recognize some of the lovely voices.

It has been really nice having Jeff around more to help with the cookie baking.  He was stirring the oats and chips into our Oatmeal Scotchies when he suddenly stopped.  He was pale and looked surprised.  I asked what was wrong.  He said, "I have no blood in my arms."  I took over the job of stirring.  He had noticed that the blood drains from his arms quickly when he is working with his arms overhead but I guess he didn't expect to have that trouble while cookie-baking!  It is a similar feeling, he says, to mixing an 80-pound bag of cement.  So if any of you are lucky enough to taste our Oatmeal Scotchies this Christmas, I hope you appreciate the difficulty involved!

Quick Update

Jeff's last treatment of Cycle 2 was on Tuesday, December 14th.  Jeff feels really good (a modified "really good").  We hope he continues to feel "really good".  He is tired at night.  He has some bruises and his tummy is pretty red.

He says it feels surreal.  "Everything's happening and you're living it but...  I don't know..."  I know what he means but I don't really know how he feels.

He has been able to work most days this month.  Christmas week should be his best week.  Treatments start up again on January 3rd - the day before his and my Mother's birthday.  I told him his treatment cycle is not a month like the doctor told us it would be but rather a "cruel month, like a woman's menstrual cycle - not 30 or 31 days but 28."  So when he left the house for treatment, he told me he was going to "get his friend today."

Oh, Nuts! and the Irish Dude

December 12, 2010

Month 2, week 1 is going fairly well.  We have noticed Jeff’s hair texture is changing.  He is aware of his injection sites if he bends over or if Giblet climbs across his belly.  The nurses are trying to avoid injecting him in the same spots from day to day and that helps a lot.  Jeff worked each afternoon and crashed in the evenings except f or Tuesday when we saw the specialist at Penn.

In September when he had the colonoscopy, Jeff told the gastroenterologist that he was afraid he was going to be told he could no longer eat one of his favorite snacks – nuts.  The doctor assured him that there was no reason to avoid nuts.  On Wednesday night Jeff was looking for cashews but when I gave him the bag, he left them alone.  Finally, he admitted they held no appeal for him at all!  Weird!  Well, of course, that meant he had to have ice cream instead.  Oh, well.

One of the nurses at the Cancer Center had said there were a couple of other guys being treated for MDS but they were never there when Jeff was there.  On Friday, Ken L. took Jeff for his treatment.  When Jeff was getting Vidazzled a man with a heavy Irish brogue came in and said, “You have what I have!”  Vidaza is a “disease-specific drug” so that if you are receiving Vidaza treatment, then you have MDS.  Jeff was glad to finally meet a compatriot.  Marty was diagnosed after symptoms were more obvious than in Jeff’s case.  Marty was not able to dance all night as was his custom.  His doctor told him to get someone to clean his house and cook because he isn’t supposed to do anything.  He will have his transplant quite soon.  Jeff left the Cancer Center feeling he is better off than poor Marty.  Ken, who is better off than either of them, was a little shocked by Marty’s story. 

Jeff gave away a customer this week because he will not be able to do the job she needs done anytime soon.  He says he has finally admitted that he had better not take on any big jobs right now.  His customers are really great people, though, and most of them are willing to wait for their custom work and may ask him to do simple repairs in the meantime. 

Prayers, please, for a sibling match to Jeff’s bone marrow and, also, please pray for “Maria, the Matchmaker,” the woman who coordinates the matching at Penn. 

The Bone Marrow Matchmaker

December 7, 2010

Kim, Jeff and I visited Dr. Porter’s office at the University of Pennsylvania today.  While sitting in the waiting room, Jeff noticed a feeble old man being wheeled towards the examination rooms in a wheelchair.  Later he came out pushing the wheelchair.  Jeff took that as a good sign!

When it was Jeff’s turn, we were led down a long hallway to an exam room.  We all noticed right away that Dr. Porter’s resident, Brett, is ever so cute!  Brett took some history and attempted to determine what we understood about MDS and to learn what we had already been told about why we were there – a bone marrow transplant.  When Brett asked about Jeff’s mood, what a joy it was to give him high, high marks for attitude!  He noted all of those things – and the evidence of a good support system - on the computer for Dr. Porter and answered some of our questions; others he deferred to Dr. Porter.  Then he went down the hall to discuss Jeff’s case with Dr. Porter.  Dr. Porter was already familiar, having consulted with Dr. Kennedy to determine a treatment plan. 

While the three of us we were waiting in the exam room, Jeff brought up his hair which so far has not shown any sign of thinning as a result of the Vidaza treatment.  He recalled that his children said they would shave their heads if he should lose his hair.  I looked over at Kim, with her gorgeous long locks, and said, “Oh!  I didn’t know Kim offered to shave her head!”  Kim said, “Neither did I!”  We all laughed, just as Brett returned with Dr. Porter.  Dr. Porter said something about our having fun, shook all of our hands and prepared to get down to business.

His demeanor was very, very serious.  He took his time explaining the disease, the prognosis if left untreated (a year or less; Thank God for poison ivy.) or if treated with Vidaza (six months or six years depending on Jeff’s response to the drug) and transplant (if he survives the treatment, he might be expected to live another 40 years).

The transplant is, of course, the only good option.  It is very, very risky business.  During the first week in the hospital, high doses of chemo and radiation would be given to kill all his bone marrow cells – good and bad.  This process could potentially harm organs: heart, lungs, liver, kidney.  Then the transplant would be given and Jeff would be monitored for infection and Graft vs. Host disease (for which there are good treatments).  It would be another four weeks or so in the hospital and would take another year before he would feel normal.  Dr. Porter said to think of it as one lousy year followed, hopefully, by another 40 good ones.

The possibility of a mini-transplant (reduced intensity is another one of its many names) was discussed.  The advantage would be that less chemo and radiation would be given, possibly sparing the organs.  There is no good data yet on whether this treatment is any more or less successful than the traditional transplant.  MDS could recur.  

Dr. Porter seemed to want to do the transplant sooner rather than later, testing Jeff's bone marrow after four months of treatment (not six months as the Vidaza literature says is typical).

Jeff wanted to know whether he would have to see his family and friends through a glass wall while in the hospital.  Dr. Porter assured him, “No.  Unless there is someone you don’t like.”  He said we will have to wear gowns and masks. 

Jeff had blood drawn for his HLA typing.  We were given the number for Maria who will arrange Paul’s, Debbie’s and Greg’s HLA tests.  Pray for a match!  Thank God for siblings willing to fight their aversions to needles for the cause!