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. 

 

Day 306 – Dermatological and Donor News

This morning Jeff had an appointment with a dermatologist at the Perelman Center.  We decided to take the train even though Jeff is immuno-suppressed and must avoid being around sick people.  We arrived early enough to stop at Dr. Porter’s office first to have Jeff’s labs drawn.  (We probably won’t have the results of his liver function tests until tomorrow.)  From Dr. Porter’s, a stop at Gia Pronto for coffee and danish, then on to dermatology.

In the waiting room we chatted with a woman whose daughter is on steroids and immunosuppressants following four – count them, four! - liver transplants.  Her first transplant was with a liver that was not a great match but it saved her life.  I don’t remember the reasons for the subsequent three transplants. 

We were taken back to an exam room where a nurse screened Jeff briefly.  Then Dr. Winnott entered the room and remarked that she had met Jeff last year around this time in preparation for his transplant.  She said she was puzzled, though, because she is usually really good with faces and although she read through the visit notes and remembered his case, she didn’t remember him.  We told her that could easily be explained.  She saw him after he was treated for leukemia and he had no hair and was much thinner than he is now.  Also, he now has that steroid-puffy face.

Dr. Winnott examined Jeff’s skin all over.  I asked her about the spot on his back which erupted with a grayish ooze sometime during his first 100 days and then turned into a crusty blackhead and stayed that way, never healing completely during the ensuing months.  She said, “That’s exactly what it is, a crusty blackhead!”  She said it is probably the start of a cyst but it is nothing to be concerned about.  She didn’t see anything else notable.  

I told Dr. Winnott that Jeff had recently confessed that he stopped using the lotion with sunscreen that was prescribed following his transplant.  He needs to use sunscreen all the time because he is on more than one medication that makes him particularly susceptible to sunburn.  Dr. Winnott reinforced this by repeating the warning several times, telling him it warranted repeating several times.  She said that while taking the anti-fungal medication, Voriconazole, even walking to the mailbox once unprotected could result in a burn.  Besides Voriconazole, he also takes an antibiotic that can cause sensitivity to the sun.  So, sunscreen is a must!

Dr. Winnott examined his finger- and toenails and Jeff removed his Bandaid so she could see his bloody fingernail.  Yesterday he whacked a finger with a hammer-stapler at Kerry and Theresa’s house and his thin nail split horizontally about ¼” long.  She recommended a vinegar-water bath twice a day to prevent infection.  It will take a long, long time to heal.  She told Jeff that, “We only have to protect you from yourself and the sun.”  He will not need to see her again for a year unless his fingernail gets infected or some other change occurs.

When we got home, there was a voicemail from Joann at Dr. Porter’s office.  Joann is the donor-recipient coordinator and is the only one on Dr. Porter’s staff who is permitted to know the identity of the bone marrow donors.  Her message said that she had a letter from Jeff’s donor and was sorry that she missed us when we were there this morning.  We were to call her and let her know whether we wanted the letter faxed or mailed.  Jeff and I discussed the quickest way we could get our hands on the letter.  I called Joann back but she was gone for the day.  I left a voicemail that said, “Jeff would like the letter scanned and emailed so we can have it fast but since that wasn’t one of the options you offered, please fax it to my work and maybe mail it, too, and…  Oh, we’re just so excited to get it, we want it in any way, every way.” 

As we get closer to Jeff’s 1^st birthday, we have been thinking about the donor often.  We wondered what we could write to encourage her to complete the paperwork approving contact after the one-year anniversary of the transplant.  Now she has written Jeff for the first time!  We can hardly wait to see what she has to say!  Jeff had heard that the bone marrow registry was originally built with military personnel and prisoners.  He joked, “They must be letting the prisoners write now.”

Jeff did something to his back, maybe stepping off the sidewalk onto the driveway at Kerry and Theresa’s but he isn’t sure.  He lists a little to his left when he walks; it looks like he has pain with every step.  Also, he has noticed that he sweats profusely which is unusual for him.  That is due to the water retention caused by the steroids.  Between the sweating and his sore back, he looks pretty ragged whenever he exerts a little.  The additional meds are causing him to feel fatigued and yet not able to sleep well at night.  Through it all, he is a trooper!  He remains pretty cheerful and is easy to be around. 

Day 293 - Setback, Moving Forward

It has been so long since I blogged (2 weeks!) that I had no idea what number day it is.  I have been apologizing to people, “I’m sorry I haven’t blogged lately but there is no significant change.” There really hadn’t been any change in Jeff’s recovery – for better or worse.  The same old issues were still there – nails, some fatigue, shoulder/arm limitations, shoulder blade muscle spasms, and steroid side effects including puffy face, large muscle problems, and incredible appetite.

Today, however, there is something to report.  At his first solo visit to Dr. Porter’s office yesterday, Jeff was given instructions for the next taper of steroids, dropping 5 mg every other day, keeping that dose for two weeks before dropping another 5 mg, and so on.  However, today Dr. Allison Rager called to say his labs showed his liver not functioning as well as they would like and that his steroid dose needs to be increased (doubled), back to 40 mg per day.  She also is adding back his immunosuppressant, Tacrolimus, which he hasn’t taken for three and a half months.  This means he will have to be careful again about being around sick people.  Dr. Rager said she is very frustrated by this turn of events but Jeff’s attitude is, “It’s fine.Just tell me what to do.”

Recently a co-worker asked about Jeff and commented that it must be very frustrating for him to not be able to do the things he used to do.  I told her it doesn’t seem to bother him too much.  Doing projects at Kerry and Theresa’s house provides an opportunity for me to see what Jeff can do and how he handles challenges.  It is a sort of proving ground for him, too, I suppose.  I am comforted that he seems to know his limitations and does not jump into things with more enthusiasm than he should.  He has noticed that his shoulder blade does not hurt too much when he does pushing jobs like spreading spackle, although there isn’t the same degree of oomph behind his stroke as there used to be, particularly when he is reaching overhead.  Maybe spackling will improve his strength.  Pulling motion like pulling carpet staples, on the other hand, sets his shoulder muscle into spasms.  He told me that he stopped pulling staples to do some of his PT exercises in an effort to stop the pain.

Theresa’s parents are coming this weekend to help prime the walls.  Flooring has arrived.  Kim is coming this weekend to consult with Kerry and Theresa on their paint color choices.  It is all so much fun!

Jeff and I think about and talk about his one-year anniversary a lot.  This leg of his recovery has been notable mostly for its lack of significant change and we look forward to the one-year milestone with more delight than anxiety.

If you are sending prayers Jeff’s way, please pray that his GVHD settles down and leaves his poor liver alone.