Today we traveled to Ann Arbor for an extracorporeal Photopheresis treatment. Ron has two treatments every other week. I see no adjustment in this pattern. The first three months of these treatments were EVERY week, so I try to remember what that was like. The treatment is done through his central port. Blood is drawn over a period of time, then a centrifuge separates the white blood cells which are treated with a drug that is photo-sensitive, the treated fluids are returned to Ron. The treatments take about two hours. On the day of the first treatment, Ron has bloodwork done an hour and a half before the light treatment begins, so that was our routine today. We eat lunch at the hospital between bloodwork and ECP. We call it "Mott Lunch." (U of M Mott Hospital where all of 7th floor is for bone marrow transplant patients--adult and pediatric; clinics and in-patient)
These treatments calm down the autoimmune activity of his new bone marrow. He does not appear to have any additional damage to his lungs or mental status this summer. Our status quo is acceptable. Ron's skin is fragile due to daily steroids, but I have no wounds to bandage at this time. His arms have a great deal of discoloration and bruising, and his back and neck are dry and itchy, but otherwise, his skin is normal. No crisis is a very good thing.
The issues I've had to deal with are my Ford Edge! I hit -straddled- a semi tire and damaged the front bumper significantly. I have learned what a deflector and a bumper valence are; mine are gone, and I have a hole in the main bumper and a little paint damage; that happened during our trip to AA two weeks ago. Today we drove into a severe thunderstorm and now I have hail damage too. There are about 20 chips in the paint but no dents. I have learned to file a claim online this month. Twice. I truly am an example of a life-long learner.
Ron will be re-evaluated for PT this week. He continues to walk with a walker the majority of the time but has shown improvement since May's hospitalization. Last evening, using the walker, we walked two short city blocks out and back. Ron told me that we had walked 4 miles in about a half an hour, so that would be 8 minute miles. He mainly has trouble with any thought process that requires synthesizing information. He has some short term memory issues, does repetitive actions like buying pens, packing things in baggies, and trying to organize things. His long term memory is amazing. Ron had always been so organized and prompt, and he struggles in an attempt to be that way now but is not able to do so. Overall, he is unaware of how changed he is and remains positive. The third anniversary of his bone marrow transplant is August 24. Ron will be 66 years old September 4. His first diagnosis of acute myeloid leukemia was April 2010 when he was 61. He has been an amazing, courageous, brave person during these cruel complications of his transplant.
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Jan, as we learn along the journey with our loved one it is taking one day & sometimes one minute at a time but trying to remember the sweet things that happen & the undying love. It's very hard at times but also time I know you wouldn't give up. Love & hugs Ann & Bob
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