Day Zero Plus Eighty-eight – Did You Feel It?

Jeff called me at work to tell me that he was resting in the guest room when the bed began shaking.  He thought that our little 18-pound Giblet was pushing on the bed.  He realized the dog could not have been pushing that hard.  Then he noticed that the chain on the ceiling fan was swaying.  Then the full-length mirror began to rattle and Giblet left the room.  He realized it was an earthquake!  He got up and stuck his head out the back door to ask Keith, who was harvesting grapes, “Did you feel that?”  Keith said, “What?”  And there was his answer.

Most of my co-workers felt the quake; Linda and I did not.  Some departments in my building – not mine - decided to evacuate for awhile.  There was a lot of excitement and an official notification from the university.  About 10 minutes after the tremor, I began to feel odd, a combination of an atmospheric pressure headache and motion sickness.  When I mentioned it, Linda said she had also begun to feel strange.  Sherri felt queasy, too.  I was very disappointed that I didn’t feel the quake.  I must have rolled my office chair just as it hit.  Julie understood my disappointment, knowing how much fun I once had in a Colorado dust storm.

Keith gave my mother a tour of our yard yesterday and showed her our grapes which were ready for harvesting.  He decided he would help us by processing the grapes himself.  He asked lots of questions about making jelly and freezing juice.  I bragged to my co-workers about Keith’s industrious efforts with the garden and grapes.  When I got home today, I was distressed to see a bumper crop crowding the kitchen and Keith up to his elbows in grapes.  He had picked grapes off and on all afternoon and was just beginning to process the fruit.  I knew what that meant.  I would be helping him deal with the fruit for many hours.  He felt badly about that and admitted he shouldn’t have brought in the entire harvest at one time.  However, I know how addicting it is to pick grapes.  Once you start, you are committed to finishing the job.

Keith insisted Jeff and I go for our walk while he stayed home and cleaned grapes.  We passed our friendly neighborhood ice cream truck driver who offered a rendition of the Easter Bonnet Song over his truck’s sound system.  He never disappoints!  When we got back home, I helped Keith clean, sort and crush the grapes, then hang the cheesecloth bags of pulp.  He was chattering away and I was so tired I was not very good company.  Keith sent me upstairs with Jeff’s evening meds and suggested I spend time with Jeff.  There is more to do tomorrow but I can see Keith is competent.  He is very aware of how clean we have to keep the kitchen and does a good job of disinfecting the counters and sinks every day.     

We received, a little belatedly, some post-transplant resource materials from the National Marrow Donor Program.  There were booklets for both the patient and the caregiver.  On Sunday, Jeff and I read to each other, a little tongue-in-cheek, from our respective booklets.  Jeff read that the patient has to come to terms with the fact that, “you may not ever be able to do some of the things you used to do.”  Jeff said, “Amy, I might not ever be able to do wash again!”  Nice try, honey!  Jeff was surprised to hear that guilt was one of the feelings the caregiver might feel. It was actually good to talk about some of the things we read about, even though we thought the materials came a little late. 

Jeff had a ring around his collar last night.  I stared at him, trying to make out why his tee shirt had a 6” whitish dusty ring around the neck.  I began to say, “What is that?” and suddenly realized it was his skin, flaking off of his face and neck.  He is itchy with GVHD rash.  Some areas have tiny red dots like a heat rash, some areas have welt-like reddish bumps and lumps, and other areas are very dry and flaky.  His “lotions and potions,” prescriptions and moisturizers, are not quite keeping the symptoms at bay.  He uses eye drops for his dry eyes but with tremors in his hands and limited pincer strength, he has difficulty putting them in himself.

Jeff avoids handling paper because he doesn’t like wearing the gloves that he is supposed to wear while handling paper.  On Saturday, he opened some mail without gloves and got a paper cut.  He bled like a pig!  His platelets are below normal and I had some concern that the cut wouldn’t heal well.  He reports that it is fine today, thank goodness.

PT Mike recommended Jeff get an EMG (electromyography) test.  Mike thinks it will give him useful information.  Jeff called Dr. Pruitt, the neurologist, today to ask her opinion.  She agreed it would give useful information about the source of his pain so that the physical therapist could choose appropriate exercises.  She told Jeff repeatedly that the test is very unpleasant and left the decision to Jeff.  I heard him on the phone asking Dr. Pruitt whether he could have it scheduled for the next time he has an appointment at the Perelman Center.  I reminded him that he would have a bone marrow biopsy that day, too.  “Oh!” he said.  He isn’t sure he wants to have that much discomfort all in one day.  He will have to think about that.