Friday, April 27, 2012

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.

Friday, April 20, 2012

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.

Friday, April 6, 2012

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

Sunday, April 1, 2012

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.