For better for worse...

..in sickness and in health, to love and cherish.. I am thinking of our wedding vows because today is our 43rd wedding anniversary. A little trivia: Ron was almost 17, and I was 18 years old when we had our first date. He was a senior in high school, and I was a sophomore in college, and we worked in the same Indiana Tollroad restaurant. A lot of time and shared life experiences have passed. We have had a blessed life.
Ron thanks me every day for taking care of him, and I remind him that I will always be here to take care of him. We vowed to do so, but it is out of much more than a sense of duty.
I am feeling mushy on our anniversary.
I have been holding off writing this entry until after yesterday's trip to Ann Arbor. I knew that Ron's skin was showing signs of graft versus host disease again, so I knew that some changes in meds would result. It is considered "a flare up", and liver enzymes were elevated more too, so it is involved as well which has been the case in the past flares. His lungs sounded a little crackly, so he had a chest X-ray too. So in the present his prednisone dosage is increased which means he has less immunity, so he has new meds for his lungs and is going to go back on the anti fungal that they stopped in July. I am hopeful that his cognitive changes will remain stable. The doctor's office has called today, and he needs an infusion to boost immunity. We will travel back to AA next week. He is also going to be seen again by the BMT head doc in regard to his chronic GVHD. Everything is a balancing act between controlling his GVHD (the fight between his own body and his new bone marrow-new immune system) and opportunity for infections. That is why he continues to take steroids, 2 antibiotics, antiviral, antifungal, and meds especially for his lungs. The meds for his lungs are similar to COPD regimen.
If he isn't able to tolerate the antifungal, I will give him IVs at home again. This would be the same as we did the first 8 months after the transplant when we lived in our AA apartment. I would use his port; I don't have to do IV pokes. Okay, I was going to keep this concise, and I am rambling. I am having our Edge repaired (computer issues)so am sitting at the dealership. I am rambling.
Ron played some golf with George this morning after rolls and juice with Troxells and Griffiths, and now he is napping. We have plans to go out for an anniversary dinner this evening.
Love to all of you. Thanks for the messages, emails, visits, prayers, positive thoughts, texts, etc. everything helps us cope.
Love, Ron and Jan

Living in the Moment

I have decided to live in the moment and stop googling for information that just scares me when we do not yet know what is causing Ron's cognitive decline. His spinal fluid and blood were tested for quite a variety of viruses and other organisms, and no answer was found. The MRI definitely did show reason for mental status changes, but the cause has not yet been determined. The screening by the neurologist and the full work up by the neuropsychology clinic have identified and measured areas of deficit. This correlates with the areas of the brain that are affected. It won't be the first time that I have asked myself or others "why?" and not found an answer.

We continue to enjoy family, beautiful end of summer weather in Michigan, and our home on Gilead Lake. We are in the process of planning an October trip up north for 3 days to visit some of our favorite places and see fall colors. We do not return to AA until September 25. I am accepting that this is not an urgent health matter that requires urgent treatment. Unless there is a change, I am going to live in the moment.

Ron and I are enjoying college and pro football and of course, the Detroit Tigers. His memory is good, and he enjoys reminiscing about many memories, near and far but has some short term memory issues. He continues to sleep a lot, usually at the least 14 hours each day. He is often quiet for long periods of time when he is awake and sits with his eyes closed. He still reads the sports pages in his newspapers. He has difficulty synthesizing information to make good judgments and plans...called executive function. He has difficulty with numbers and spatial orientation, and he has weakness in his legs and balance issues. He has no pain, is usually mellow, and does not really comprehend or care that his abilities have changed. I think this is good, and he still has a sense of humor.

His chronic GVHD (rejection) is being treated with photopheresis light treatments that will now be monthly. (after 12 weekly two day treatments followed by 6 months of two day biweekly treatments) He receives a steroid infusion boost once a month and is on a low dose of prednisone daily. The GVHD continues to affect his skin, especially his back. He has medications to treat his lungs which are also affected. Even though his treatments are monthly starting this 9th month, he will keep his Neostar central line which is a port, so he does not have to have pokes for lab work or treatments. ECP would require two IVs each time.

Well, that was probably a lot more information than you really wanted to hear! I had to cut myself off; I was on a roll. I am thankful that we still enjoy each other's company and can get out and do things. Ron enjoys eating out, and there was almost a whole year when we couldn't do that. So we move forward and try hard not to fear the future.

Living in the moment,
Ron and Jan

More "no news"

...or maybe I should say no answers. We saw Ron's PA briefly today, and he told us that all tests that they have run so far are negative. So there is no definitive answer yet into what has caused the brain abnormalities revealed on the MRI. We do not know at this time if his mental and coordination issues will be reversible, stable, or progressive. All of the unknown is difficult. If I can make a list, have definite things I can read and study, have procedures to mark on my calendar, etc., I feel much more in control. I don't know what is next. We are not scheduled to see Dr. Mag in clinic again until September 25.
I did spend an hour with the social worker for the clinic. We have known her over 3 years now as she has frequently touched base with us during Ron's many hospitalizations for chemotherapy, GVHD, and infections. She is gentle, has great insight, and suggestions.
I will let you know what's next when I know.

No News is Good News?

I do not yet have any results of Ron's testing last week at U of M. He had a urinalysis, blood work, and spinal tap on Thursday. Things at home remain about the same, but the waiting is difficult.
Jan

Here we are!

Thanks to everyone for your good wishes and continued support in so many ways!
Love, Ron & Jan

BG, AA, BG

Ron really had a good birthday. We had dinner which included chocolate cake and ice cream with Cale's family. He opened gifts back at our BG Hampton room afterwards. Staying at the Hampton gives him the quiet and sleep time that he needs now. We have earned so many Hampton points that the 3 nights are free. I am looking forward to friends coming to visit me Friday. This day was full too with travel to AA for blood tests and his spinal tap which was done under sedation and with X-ray. Thank you, Dr. Mag for ordering it that way; Ron doesn't even remember it. He is spending hours lying flat but is allowed to eat at a table, then go back to bed. I didn't tell them it would be in a restaurant with friends, daughter-in-law Lisa's parents. Besides, lisa's dad is a doctor, and he can advise us if something develops. Some things you just feel like you gotta do, and this dinner was something both of us wanted to do. We are eating in BG.
Nice to be back in Bowling Green for a few nights. Still feels like home.

A Special Day

It was a special day. Ron and I drove to Centreville, MI where the golf group from BG was playing on the first day of their Fall Trip. Ron used to play regularly with this group when we lived in BG, and he also made occasional trips to play with them early in our retirement. It was bittersweet to see the group in action with Ron on the sidelines, but it was a very good outing/reunion for us. Jim Treeger had a golf cart reserved for us to follow the group for 3 holes...then we were ready to head back home.
Ron's spinal tap (lumbar puncture) is scheduled for Thursday morning. We will travel to AA in the morning and hope to be back on the road by 1:00. We are having dinner with friends in BG Thursday evening.