Decisions, decisions

Over the past few months, we have been trying to make a decision about Ron's teeth. We have seen his regular dentist, an oral surgeon in BG, and this week an oral surgeon at U of M Hospital. And we still haven't made a decision. The next step is for Ron to see a pre-op physician and an anestheologist to see if he can tolerate oral surgery to remove what is left of his teeth. There is nothing that can be saved, but he does have some chewing power left, so it is hard to decide if he should have a surgery that might be troublesome for him when he might not be able to wear dentures anyway. There is the possibility of an infection due to all of the decay. He takes 3 antibiotics, so no infection has developed so far. How do we make this decision??!!??? We continue to gather information and try to weigh the advantages and disadvantages. I can't imagine what the recovery time and consequences will be for him. Feels like a scary decision to make.
Some pictures from the past week:

We had dinner with Cale's family at BW3 after driving out to Grand Rapids, OH, to see the spectacular 2 story high ice piles made by Mother Nature when the ice went out on the Maumee River. A lot of damage was done this year when huge ice chunks mowed down flooded areas. The markers were broken off in a cemetery, for example.
We spent Monday and Tuesday in Ann Arbor for Ron's 2 treatments and the appointment with the oral surgeon. His ECP treatments alter T cells in his blood, so they lessen the attack his body. He has now had 109 treatments. After 3 months of going every week (2 days each ECP week), 18 months of going every other week, 3 months of going every third week, in April we will begin "only" monthly treatments. It has been a long haul; very excited about tapering treatments to monthly!

Going with the flow...

I think it would be fascinating to study the human brain. Ron's behaviors are so diverse. A day or two ago, he was telling me the names of the players in the line-up for the 1959 White Sox in the World Series. Then yesterday when I came out to the great room, he was wearing my pull-on black knit pants and my glasses. Today he wanted to make coffee for me but didn't put the pot on the coffee maker, and by the time I saw it, it had run over the countertop, down the front, and under the stove. Ron has the appearance of a chronically ill person and has aged by literally decades since his transplant. The chemotherapy didn't have that effect. In the past before the bone marrow transplant, there had been more than one time when someone thought I was his mother, and now there have been times when people think he is my father.
One of my favorite stories: soon after we moved to the lake in 2008, a neighbor told me to thank my son for mowing by the edge of the road across from her house when he was mowing our yard. I told her thanks;I would, but he was my husband not my son. She said, Oh!! He's your husband's son. Ron had always looked young for his age and was so healthy and fit.
We have had a pretty good winter- no hospitalizations or acute illness. We seem to be able to control his chronic issues.
We had been looking at a smaller house here at the lake and had a second appointment scheduled to look at it with my sister and brother in law. Then our realtor called and said that it had sold, so we have decided to make some improvements in our current lake house and keep it at least another year. We might not attempt to stay here when we have extreme cold and deep snow next winter. I am disappointed but can say, "oh, well, it wasn't meant to be." Moving would have been a huge undertaking. The good part is that I made a major effort to get our home more organized, less cluttered, and had it nearly presentable to put on the market.
Happy Spring. The warmer temperatures have been nothing short of amazing and uplifting.
Love, Jan

In like a lion...

Sometimes it feels like I have a lot to mentally digest. I have just finished reading Still Alice, and it brought to mind many milestones that we have had to journey through. I couldn't help but compare and contrast Ron's brain changes to Alice, the main character who was diagnosed with early onset Alzheimer's disease. Ron's cognitive disorder is not Alzheimer's or another dementia. That is one thing that was agreed on by his neurologist, the neuro-psyc doc, and Ron's speech therapist.
Alice seemed so real that I thought this book was a memoir written by her family, not fiction. I could relate to her denial, compensation, and explanations that she hung onto before finally accepting that something was wrong. I remember the moment when I faced that scary unknown head-on and physically experienced a dark, and what felt like an evil, presence. I knew something was horribly wrong with Ron's thinking. He had had cognitive and personality changes for six months following a hospitalization in the ICU for several issues; this was two years ago. This book made me rehash those experiences. Rehashing is good for me; it brings understanding and makes me thankful that Ron's long term memory is quite intact, and his short term memory isn't terrible. His brain changes affect his mobility and problem solving skills mostly. So what does that mean? He doesn't have good balance so must use his walker, a four prong cane, and when we're in a store he pushes a shopping cart for balance. He has repetitive behaviors like buying the same items repeatedly, adding a blanket to his chair repeatedly. Yesterday when I cleaned around his chair, he had 9 blankets, 50+ pens and markers in various containers, index cards in various sizes, notebooks, 3 pairs of gloves, three stocking hats, caps; and it had only been a couple days. Ron is Usually very laid back, calm and accepting of "how he is", so I am grateful for this, and we have mostly enjoyable days.
I have been writing this entry for a week and didn't want it to sound melodramatic. I am glad to see the arrival of March! I feel like spring will be especially uplifting this year. Ron and I are trying to decide what to do about our lake house. It really is too much for us, but we would still like a place on the lake. We are looking at a house a second time this week. It has many good features but drawbacks too. The timing of all of this is mind boggling! I keep telling myself that it will play out like it's meant to, and there's no harm in taking things slowly.