Congrats to Ohio State Buckeyes!

Well, that was unexpected as the Buckeye football season unfolded! We had a good time watching the bowl games and especially Ohio State. On game day, we wore our Buckeye apparel to U of M for Ron's treatment. Seriously, I got booed two times.
We haven't had much of a winter, but a most beautiful morning is pictured above. The frost clung to everything and then sparkled in the sunlight. Gorgeous!
Ron is hanging in there! He has had a touch of something that has slowed him down a bit, and he has lost about 12 pounds over the past 2 months, but it has not caused an acute situation that required an unscheduled doctor visit. We stopped going to the Community Center to walk and use exercise equipment, but we do get out to walk while shopping and even took a trip to Hollywood Casino which is only 20 minutes from our BG home. We also went to a Falcon basketball game…only saw the 2nd half because someone had the time of the game mixed up. Luckily, brother-in-law George saw the score scroll across the TV, and we hurried up and departed! We will probably do that again; they have excellent accommodations for handicap seating.
I continue to have a caregiver come and stay with Ron, so I can go out for a 3 hour block of time--once or twice a week when we are in BG. She is the best! She bakes things for us and cleans while she is here. It is a huge help to me in many ways.
I have an appointment set up for Ron to see an oral surgeon in February. In mid-February, he will be finished with his 3 months of blood thinner injections. (I will be so glad; I really don't like giving belly shots.)
I just put the Christmas tree and other decorations away this weekend; I was ready. Time is passing by quickly this winter, and I am still waiting for one big snow; one would be enough.
Love, Ron & Jan

What a relief it is...

Every now and then I can feel a shift in how I feel about things. Yesterday was such a day because we made it through the trips, the holidays, and through the immunity infusion IVIG without a hospitalization. The antibodies that Ron received in the infusion are hard at work; I am sure; to help fight any illness that is/was on the horizon. The flu is an issue here in Michigan, so Ron wore a mask at the hospital yesterday when he was there for appointments. We were gone 8-6. He has a chronic cough, so I am sure other patients and visitors were relieved to know he was wearing a mask too! We go back 2 days next week for his ECP light treatments, so follow up bloodwork should show his white blood cell count back in a normal range. This is actually a routine to us, and even we feel good about being back in a routine.
To explain the pictures:
Ron has premeds before the IVIG infusion, including steroids because he had had hives twice and once spiked a temp during transfusions of platelets and red blood cells, so he has tylenol, benadryl, and a medrol infusion before the IVIG which is antibodies from over 1000 donors. (not a typo-- the antibodies are from donor plasma) Ron is wearing his Detroit Lions knit cap, and I have no idea why it looks so odd in this picture. After the test dose of IVIG, he then is given the large dose--the glass bottle. With bloodwork, seeing the doc, and having the infusion in a hospital-like room, we were in the U of M Mott Hospital Adult Bone Marrow Clinic from 9:15-4:00, but like I said, what a relief I felt to be at this point. His next IVIG is scheduled for February 19. Keeping his immunity up will hopefully keep him from developing pneumonia again or another illness.
Whew!!
Love, Ron & Jan

Happy New Year 2015!!

I don't think I had ever realized how much reflection and anticipation I experienced at the turn of the calendar to a new year. It usually was a pleasant review of the year's accomplishments and making broad goals and plans for the new year...and throw in a new year resolution or two. This year I struggled to look ahead with joyful anticipations of plans for the new year. In fact, it felt daunting at times. Five years ago at this time we were making plans for a trip to Savannah and then to Florida to break up our Michigan winter. Ron was already experiencing the first symptoms of acute myeloid leukemia a month before our trip. By the time we were in Florida, he was quite ill but did not agree to see a doctor until we returned to Michigan. He was hospitalized that day and transferred to U of M Hospitals. And our journey began.
So where are we now, and what can we expect for 2015? We have endured a lot, and so I think I tried to look at the whole year at a glance, and that was overwhelming, so I am starting to chunk and compartmentalize. It makes things manageable to be able to do this. The unknowing is both a relief and a stressor, so I start to look at smaller chunks of time and disregard the big picture because there are too many unknowns. I have put a lot of thought into this strategy. The fall trip, the Thanksgiving trip to Virginia, Christmas shopping, preparing boxes to mail, Christmas festivities, Christmas cards, decorating, etc. were projects that chunked up the last 3 months for me. Then I had to face the new year and its unknowns head on. I, at first, tried to look at the big picture too much, and that is impossible to do in our situation. There is no way to know what to expect, but in all likelihood there will be more health crises. And we will do what we need to do and find joy in life experiences along the way.