Thursday, October 24, 2013
A Bit Weary...
We have had a stretch of busy days, and I am ready to relax and catch up on some things the next 3 days. I am a home-body anyway, so this will be enjoyable for me. We traveled to Ann Arbor Monday and Tuesday of this week. Ron had appointments with his transplant doc and also the doc who is the BMT head doc. After Ron had a flare up of his graft versus host disease a month ago, Dr. Mag wanted him to see Dr.Couriel. He felt Ron needs to be checked for lung issues and also another MRI to see if there are any changes in his brain lesions. We will travel to U of M Canton, MI for chest and sinus CT scans on Monday. That will be a day trip. Dr. Couriel believes that he had a flare as a result of starting ECP light treatments only once a month in September, so Ron will resume biweekly trips to Ann Arbor this month.
Another change will be with his preventative anti-fungal medication. He is having this medication in IV infusion, so we have the IV pole out of the closet again. He had his first IV at the clinic on Tuesday, and a visiting nurse came yesterday to watch me give the first at home infusion. This is a daily infusion that takes about an hour. The liquid antifungal aggravates his cognition and coordination issues. He will also receive physical therapy at home for awhile and then perhaps transition to PT back at the facility that we used last winter.
Yes, winter looms, so we have had our flu shots and are hoping for no hospitalizations this winter. Next week we will spend 3 days in Ann Arbor for ECP treatments and the MRI of his head. I am assuming that he will then be able to take less steroids. It is such a balancing act, and less ECP tipped the scale which caused the GVHD flare up. Probably.
It is a relief that gardening is coming to year's end. I have indoor projects planned, and we have already had a killing frost and snow flurries, and I even put on my long underwear today! Ha!
Love to all friends and family as our journey is now a saga!
Ron and Jan
Another change will be with his preventative anti-fungal medication. He is having this medication in IV infusion, so we have the IV pole out of the closet again. He had his first IV at the clinic on Tuesday, and a visiting nurse came yesterday to watch me give the first at home infusion. This is a daily infusion that takes about an hour. The liquid antifungal aggravates his cognition and coordination issues. He will also receive physical therapy at home for awhile and then perhaps transition to PT back at the facility that we used last winter.
Yes, winter looms, so we have had our flu shots and are hoping for no hospitalizations this winter. Next week we will spend 3 days in Ann Arbor for ECP treatments and the MRI of his head. I am assuming that he will then be able to take less steroids. It is such a balancing act, and less ECP tipped the scale which caused the GVHD flare up. Probably.
It is a relief that gardening is coming to year's end. I have indoor projects planned, and we have already had a killing frost and snow flurries, and I even put on my long underwear today! Ha!
Love to all friends and family as our journey is now a saga!
Ron and Jan
Saturday, October 19, 2013
Mid-October
We are home from our trip up north. We love visiting the Leelanau Peninsula in the fall. Our first year of retirement in 2008 was the first fall trip north, and it was such a perfect trip...both great weather and great health. We returned to our favorite rock hunting beach, orchard, bakery, restaurants, and casino. We had a good trip in spite of our current challenges, and I am truly grateful that we could go. You see a lot more when you do all of the driving because your eyes are always open! Ha! We were in vacation mode, so it was a relaxing time. The colors were beautiful with lots of reds and gold but not enhanced by sunshine this year. We stayed at two places, and I hauled our things in rainfall both times. We brought home some pretty rocks and several with Petosky fossils. A good trip for us.
We have two days in Ann Arbor this week. Ron will see his transplant doc, Dr. Magenau and also the main doc of the clinic who will also evaluate his graft versus host disease. I don't think that they will taper the steroids this week because I think changes will be made with his anti fungal med and anti pneumonia med; due to side effects. Usually, not too many things are changed at the same time, so the cause and effect can be understood. Ron's quirky behaviors have increased in the last two weeks. I have always been a patient person, but my patience is fine tuned now!
On our trip to Ann Arbor, we will visit Ron's mother who is increasingly becoming weaker. Hospice is supporting her caregiver with services. So much to think about and work through mentally and emotionally.
We had company today! Cale's family came for the day, and we had a relaxing time. We enjoyed the Buckeyes game, picked the only 3 pumpkins, a few tomatoes, apples, and snake gourds and threw a whole bunch of rocks into the lake. We also read a few books and baked cookies. And Jack read a book to me! Joey had visited a one room school museum on a field trip, so I showed him his great great grandparents McGuffey readers and slate, and he showed me his cross country medal. Allison loves to be read to. Good medicine for Grammy...so much value in the simple pleasures and still considering myself a lucky person.
We have two days in Ann Arbor this week. Ron will see his transplant doc, Dr. Magenau and also the main doc of the clinic who will also evaluate his graft versus host disease. I don't think that they will taper the steroids this week because I think changes will be made with his anti fungal med and anti pneumonia med; due to side effects. Usually, not too many things are changed at the same time, so the cause and effect can be understood. Ron's quirky behaviors have increased in the last two weeks. I have always been a patient person, but my patience is fine tuned now!
On our trip to Ann Arbor, we will visit Ron's mother who is increasingly becoming weaker. Hospice is supporting her caregiver with services. So much to think about and work through mentally and emotionally.
We had company today! Cale's family came for the day, and we had a relaxing time. We enjoyed the Buckeyes game, picked the only 3 pumpkins, a few tomatoes, apples, and snake gourds and threw a whole bunch of rocks into the lake. We also read a few books and baked cookies. And Jack read a book to me! Joey had visited a one room school museum on a field trip, so I showed him his great great grandparents McGuffey readers and slate, and he showed me his cross country medal. Allison loves to be read to. Good medicine for Grammy...so much value in the simple pleasures and still considering myself a lucky person.
Saturday, October 12, 2013
Pushing Into Fall
As I read my last entry, I see that events played out as anticipated. The bonus was that the fall weather was glorious this week. It was 78 degrees today when we took out the docks. Because I have memories of spitting snow on spring and fall "dock days", today's sunny, warm weather was great. The down side was knowing that it would have been a great day for a pontoon ride! BUT so glad that this fall ritual is done.
Ron had his two ECP light treatments for the month of October on Wednesday and Thursday. It was good seeing our ECP nurse friends again. Ron takes ear plugs because we talk and laugh during his treatments. I also bounce ideas and concerns off them...great support for me. His steroid dose was tapered, so we are grinding along in the right direction again. His new antibiotic seems to have affected his liver enzymes so something new to follow and learn about. I am also spot checking his glucose level for a few days. The steroids cause it to be higher but not at a level where he has needed insulin yet. Have to keep on my toes!
We are really in a pretty good spot and looking forward to sightseeing in Michigan this week and starting to think about our trip to Virginia in November.
Love to all,
Ron & Jan
Ron had his two ECP light treatments for the month of October on Wednesday and Thursday. It was good seeing our ECP nurse friends again. Ron takes ear plugs because we talk and laugh during his treatments. I also bounce ideas and concerns off them...great support for me. His steroid dose was tapered, so we are grinding along in the right direction again. His new antibiotic seems to have affected his liver enzymes so something new to follow and learn about. I am also spot checking his glucose level for a few days. The steroids cause it to be higher but not at a level where he has needed insulin yet. Have to keep on my toes!
We are really in a pretty good spot and looking forward to sightseeing in Michigan this week and starting to think about our trip to Virginia in November.
Love to all,
Ron & Jan
Sunday, October 6, 2013
Weekly Update
For our anniversary, we went to Caruso's, an Italian restaurant near home. It was a nice outing for us. Wow! And now it is October; that seems amazing to me. We did make our one day trip to Ann Arbor for Ron's immunity infusion. From check in to leaving, it takes about 6 hours. This is an infusion of antibodies from over 1000 people who have donated blood. IVIG.
We visited Ron's mother on our way home. She is 92 and lives in a foster home that provides nursing home care in an amazing, caring family setting. She is failing quickly now; she has not had a major health event. Basically, she is just wearing out. Her home is about 10 minutes from Rick and Tammy's barber shop in the Airport Road Meijer store in Jackson, MI. (Rick is Ron's brother.)
Ron's med changes have controlled his GVHD but also have aggravated his coordination and personality changes, but it is manageable. His prednisone dose should be tapered this week. We will be in Ann Arbor two days for ECP, the light treatments and check by the doc or PA.
The pontoon will go into storage this week. The weather just became autumn-like today. The last six weeks have been beautiful. Could the skies be any bluer than they are in September? Now we are enjoying the day to day changes to fall colors. Next weekend two of our Amish friends are going to come and help take out both Hover docks. I have been doing fall gardening at a very lesiurely pace.
We have our reservations made for our trip north to the Leelanau Peninsula. Both of us are looking forward to visiting some favorite places in that area. Ron is not allowed to drive, and I have become "the driver", and he is the navigator...one of our many role reversals!
We visited Ron's mother on our way home. She is 92 and lives in a foster home that provides nursing home care in an amazing, caring family setting. She is failing quickly now; she has not had a major health event. Basically, she is just wearing out. Her home is about 10 minutes from Rick and Tammy's barber shop in the Airport Road Meijer store in Jackson, MI. (Rick is Ron's brother.)
Ron's med changes have controlled his GVHD but also have aggravated his coordination and personality changes, but it is manageable. His prednisone dose should be tapered this week. We will be in Ann Arbor two days for ECP, the light treatments and check by the doc or PA.
The pontoon will go into storage this week. The weather just became autumn-like today. The last six weeks have been beautiful. Could the skies be any bluer than they are in September? Now we are enjoying the day to day changes to fall colors. Next weekend two of our Amish friends are going to come and help take out both Hover docks. I have been doing fall gardening at a very lesiurely pace.
We have our reservations made for our trip north to the Leelanau Peninsula. Both of us are looking forward to visiting some favorite places in that area. Ron is not allowed to drive, and I have become "the driver", and he is the navigator...one of our many role reversals!
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