Saturday, June 21, 2014
Update # 160
7.5 Years
Good Morning,
Sorry. I know Jeff’s appointment was Monday the 16th and I’ve kept you waiting. Life has been very busy around here.
Just a quick note – Ken retired from parish ministry Sunday, June 15th. He is on vacation the rest of June and brought the last of his things home on Thursday. An opportunity presented itself that Ken could not pass by – although it was a year earlier than he had hoped. Beginning July 1st, Ken will be a half-time Assistant to the Bishop. He will probably work a couple of days a week in Springfield, do some work at home, and visit churches 2 or 3 Sundays a month. (We’ll still live in our home and officially remain members here.) We had a joyous celebration weekend with family and friends. Last Sunday’s service ended 39 years in the parish with 24 here at St. Paul’s. Our church family had a fabulous luncheon with wonderful memories and gifts. An absolutely perfect day.
Now to Jeff. Last summer, he was having an issue with those light-colored spots on his skin. The cream seemed to help clear them away and things were stabilized for months. This Spring, Jeff began to notice that when he became warm in the director’s booth, the spots returned and seemed to increase. He happened to mention this to his general practitioner. She did a bit of research and felt the spots might be fungal. She gave him a script for an anti-fungal med he had previously taken. The spots almost immediately began to diminish.
After returning in January from our Rose Parade/Disneyland vacation, Jeff had some sort of virus for a couple of days. Later in the month, it turned into bronchitis. Jeff was off work for six days with 2 weeks of antibiotics and daily nebulizer treatments. His Prednisone was upped for a bit but then returned to his normal dosage. The GVHD in his lungs really makes him more susceptible to pulmonary issues.
In March, Jeff finally had some time to do the sleep study the Iowa City ocular doctor wanted. Jeff’s working hours made the scheduling of the study a difficult process. The results of the study are debatable. The Waterloo hospital reports one thing but when Jeff discussed it at his StL appointment, they disagree. Jeff is going to ask the Iowa City doctor to schedule a different sleep study at the Iowa City hospital.
Jeff received a phone message from StL in May saying that his June 16th with Dr. DiPersio was cancelled. A little panic time since Jeff had only the 16th or 17th to see someone. A return phone call worked things out. Dr. DiPersio had to be gone but his nurse practitioner, Stephanie, would be seeing patients in his place. A new earlier time was set for the 16th.
Stephanie was pleased with Jeff’s basic health. Yes, be careful with any issues with the lungs. The spots – she felt Dr. DiPersio would have said – GVHD – and taking the anti-fungal is fine. Stephanie feels Jeff might just be having skin pigment changes. She felt the sleep study results were inaccurate and hopes Jeff does have a second one. One recommendation though is to have a bone density test. With all his chemo and long-term Prednisone, Jeff can be a candidate for Osteoporosis (yes, he takes daily calcium) so they want to keep a close watch. A test every other year should be sufficient. Jeff can have this done at his Waterloo hospital. Overall, a good yearly check-up.
Next year’s StL appointment is set for June 29th but it may be changed. Dr. DiPersio’s group has a yearly celebration for bone marrow transplant recipients in the month of August. They always ask Jeff to attend but timing has not worked out. When the 2015 date is scheduled, Jeff is hoping to change his appointment to coincide with the party.
I’ll be going to Iowa City for Jeff’s July 17th eye appointments. His eyes seem to be about the same. The drops have not seemed to make much difference.
Jeff & Meridith were here from the 13th to the 18th. After his appointment on Monday, we enjoyed seeing Phase 1 of Ballpark Village before watching the Cards beat the Mets that evening.
There was a scare with Ken’s Mom. Driving to StL the morning of the 16th, Ken’s brother, Dennis, called to say Elsie had gone limp at breakfast. The staff said she was unresponsive, cold and clammy so an ambulance was called. The CT Scan and CBC at the hospital showed no stroke or counts really out of whack. Within a couple of hours, Elsie was back to her normal self and returned to the nursing home before Jeff’s appointment was even finished. When we got to Perryville Tuesday morning, we spoke first with the nurses. We all agreed the episode sounded like a TIA. Our visit with Grandma was as usual. She recognizes us and converses some with short-term memory the problem. Jeff was glad to have time with her since he’s only down once a year.
I don’t know if I’ll update after the July appointments. I might wait till after the 2nd sleep study and a follow-up with the Iowa City ocular doc.
We pray all of you are doing well. I hear from some of you more often than others but you’re in our thoughts and prayers frequently. Your love and support for Jeff have been generous for these 13 years. We thank God for our St. Paul’s family of 24 years. Ken’s new ministry will allow us to stay close but enter a new phase of life. He looks forward to this next opportunity.
much love and thanks,
Marcia