Somewhere in the World

Thanks to Dan's sister, Sherry, who left a prayer for Jeff at the wailing wall in Israel, for taking our prayers oversees. 

We are hoping and praying that somewhere in the world is Jeff's perfect match.  How wonderful to have Paul as a viable back-up plan.  It certainly takes some of the pressure off.

Please pray, also, for the many people who make bone marrow donation and transplant possible:  from the medical staff to the techies who manage the database of those beautiful millions of people willing to donate.

Close Enough for Horseshoes But We Need a Ringer

On a date like 1-11-11 we had hoped for good luck and good news.  Dr. Porter came into the examination room with a serious face.  This might not be unusual for an oncologist but we were hoping to see some cartwheels or something.  The news was mixed.  Dr. Porter said Jeff’s blood counts are “fantastic.”  Unfortunately, none of Jeff’s siblings are a close match.  Debbie and Greg match each other but not Jeff.  (Hopefully, that fact will never be anything more than an interesting factoid.)  Paul is better than a 50% match but not as close a match as Dr. Porter would like.  It would be adequate if nothing closer can be found.  Dr. Porter said, “Don’t be mean to your brother yet.”  Jeff’s blood sample from last month’s draw for the HLA typing is being tested further so that he can be entered into the bone marrow registry.  In the meantime, Jeff will continue on Vidaza for at least one more cycle – and maybe two or three - while the search goes on. He’ll have another biopsy in mid-February. 

Dr. Porter sometimes holds back while he gauges our understanding and reaction to things.  Today he drew us out to find out whether we had thought about the low-intensity transplant.  When we told him Jeff’s preference was to do the conventional transplant if it meant a better chance of doing it only once with possibly better results, Dr. Porter said the conventional transplant would be what he would recommend in Jeff’s case.  He said Jeff is in a gray area for recommended treatment.  He would have a different recommendation for a 40-year-old than a 65-year-old but Jeff falls in-between.  When we asked about a second transplant, if it became necessary (for example, if a low-intensity transplant didn’t work well), he said that a second transplant would be “extraordinary” and you would not want to plan for a second transplant.

We asked about Jefferson’s work with 50% matches and whether that is something we should look at.  He said a conventional transplant with Paul as a donor would still be better than what Jefferson is doing, trying to make it safer to use marrow with only a 50% match.

We discussed what would be involved for the donor.  If Paul donates, the harvesting would be done at Penn and may or may not require an overnight stay.  If the donor is in Japan, California or Timbuktu, it would be harvested where the donor lives.  The donor’s identity would be kept confidential for a year after which time the donor and recipient can learn each others’ identities.   Only one staff member knows the source of the bone marrow donors; no one else is allowed to know.  Jeff mused, “It’s just blood.  I don’t think I would need to know the donor.”  Amy pointed out that some people on are the registry for years and years and are never called so when they are called it must be a pretty big deal to them.  Plus, it would be a life-saving big deal for Jeff.  Amy would want to know.  Jeff would not.  Stay tuned…   

Jeff mentioned that people have asked about having their bone marrow tested and he asked Dr. Porter for advice on what to tell them.  He said that although it is unlikely that they could help Jeff, it is probably worth encouraging them to register at www.marrow.org.  Of course, they would have to be willing to help anyone who might be a match.

Oh, and sadly, Dr. Porter’s cute resident was not present today.  We were all disappointed, Kim particularly.  Maybe next time.

Prayers, please, for a match and continued good blood counts.  And please leave comments here or send us emails.  Your messages help.

Belly Buster and Hair Today, Gone Tomorrow

On the night of Day 4, Treatment Cycle 3 (Thursday night), Keith’s girlfriend, Addie, asked Jeff  if he had been outside a lot since he looked so tanned.  I explained that during treatment weeks, Jeff’s skin takes on an orange-y tone.  She said, “Well, it looks like you’ve been to Aruba!”  In truth, it looks more like a bottle tan.  If he were to vacation in Aruba, he would display a lightly bruised and brightly red belly from the shots. 

This week Jeff has had a chance to talk more with Daniel, the Irish Dude, at the Cancer Center.  Daniel’s belly is very bruised.  We wonder if his platelets are low, causing the bruising.  He is now bald.  He started treatment when Jeff did.  We wonder whether he shaved preemptively as suggested by the book, “Chemotherapy and You.”  Jeff’s white and red blood counts and platelets have all improved and are now near the low-side of normal.  His hemoglobin, which has to do with iron and the shape of the red blood cells, is low. 

Jeff also met Herman the German this week at the Cancer Center.  Herman introduced himself by the nickname he claims to hate - but then why did he give it?  He said that people think he looks like Uncle Fester with his bald head.  We had to admit it; he did.  The staff had to check everyone’s insurance for the first of the year and Herman was perturbed by the long wait.  He was willing to take on the staff on behalf of the patients; “It’s ridiculous!”  Jeff reminded him that staff members were about to stick needles in them. 

We learned this week that the Cancer Center’s Monday refreshments volunteer, Gerry, is a three-time cancer survivor.  He related a funny story:  One Sunday as he was serving as usher in his church, the prayer list was read by the priest.  The priest prayed for all those who were sick and then prayed for those recently deceased.  He was surprised to hear his name among the latter group.  Since he was standing in the back of the church holding the offering basket, he was in a prime position to see the parishioners’ reaction to the “news.”  He saw his very good friends sitting towards the back and he shrugged in their direction as he carried the basket forward.  I told him it must have been a little bit like Huck Finn watching his own funeral. 

Santa brought Jeff some elastic-waistband pants which are recommended by the nurses at the Cancer Center and by that hot title, “Chemotherapy and You.”  He likes them but still has not worn them outside of the house.  Once a drycleaner, always a drycleaner…

Waiting to hear about a match is getting difficult.  In three more days we will see the specialist at Penn again.  We hope Dr. Porter has good news for us. 

Thanks to all the drivers:  Nancy, Annie, Ken, Keith, Mark, Judy, Harry

No Business Like Snow Business

Jeff and Amy had role reversals during the snow storm.  Amy became the muscle of the operation - with Keith’s help once he woke up.  Jeff took over duties as porch-cleaner-offer, dog-trail-maker and hot-chocolate-preparer.  It was tough for him to be relegated to watching the snowblowing activity of our neighbors.  He was sorry he chose the front picture window for placement of the Christmas tree as it impeded his ability to watch the entertainment outside.  Fran and Greg blew our sidewalk and then proceeded to argue over the best way to do the rest of the sidewalks.  Jeff wished he had learned how to lip-read.  Fun was had by all.