Sunday, July 29, 2012 at Gilead Lake

We are looking forward to the coming week without a day in Ann Arbor! Hard to believe that it will be August and that thoughts are turning to the next school year for kids and grandkids!

I often feel grateful for having retired from teaching after the 2008 school year. Our first year of retirement was "mostly above expectations." Then during the summer and fall of 2009 I had rotator cuff surgery and rehab. (no longer seems like a big deal) Ron was diagnosed with acute myeloid leukemia in April 2010.

I am still hopeful and believe that we will be able to return to our travels in the fall. We are planning to go to northern Michigan in October and to Virginia for Thanksgiving. As Ron continues to improve, we think we will be able to get down our 33 steps to the pontoon and take boat rides. Most of the summer weather has been too hot for going out on the lake; Ron is sensitive to hot temps. Also, I have all ready started to imagine my gardens for next summer. It feels good to be anticipating trips and life at home too.

Grind... Another Day in Ann Arbor: 11 Months After Transplant

We definitely need a "week off" from our Ann Arbor trips. Because today's first appointment was at 9:00 at a new office, we were up early to prepare for the 2 hour travel time. He met with a neurologist for an evaluation. Now this might not seem like good news to you, but he told Ron that it might take 1-2 years more for his body to reach its peak recovery. The assault on his body with leukemia, 7 rounds of toxic chemo, the bone marrow transplant, viral and bacterial infections that required more hospitalizations, steroids and immunosuppressants to combat the acute and now chronic graft versus host disease have serious side effects,especially muscle atrophy and 60 pound weight loss, and with the loss of vision in his left eye...his recovery is slow but still a work in progress. There is no indication of a major neurologically based disease or condition that will cause deterioration of motor skills, so we are hopeful that he will get much better over time. It was such a relief to know that this isn't "as good as it's going to get." He will keep grinding.

A Day in Ann Arbor: last rituxan infusion

I feel wired tonight..guess I am glad that the series of four Monday infusions to treat Ron's GVHD of his skin are finished. It has been an effective treatment and hopefully will continue to work for weeks or months. Sometimes the GVHD just fades away; now that would really be awesome. It is a treatment that could be repeated after a period of time if needed.

Next Tuesday's appointment with a neurologist and an infusion of zometa for strengthening bones will make the sixth consecutive week that we have traveled to AA for appointments. We are planning to be able to stay home July 24-August 6. Yeah!

Ron's mouth is still painful but improving. He is going to try a steroid gel this week as he continues taking the stronger antiviral tabs. He also has new glasses. The prescription changed some, and he changed from a progressive lens to a bifocal, so his eye doesn't have to work so hard to find the area of the lens that brings clarity to his vision. He said it seems 100% better for him.

My flowers are hanging on for cooler, wetter weather, and my small garden is definitely stressed by the heat. It is much better for Ron when it is cooler and we walk outside. He has been using his cane rather than the walker when we go walking outside. It was a good week. I am optimistic that we are in a good place in his recovery medically and that he has renewed motivation to exercise.

Monday, July 9, 2012: Doctor Day in AA

Monday was a long day!! My last entry did not mention the trouble that Ron has had with GVHD of his mouth. This means sores that are painful, and that has affected his appetite over the last 2-3 weeks. He had lost 10 pounds over the last 3 weeks, so he is back on megace, an appetite stimulant. He also now has a topical med that numbs and treats the sores. That is in addition to a steroid mouth rinse and an oral adhesive rinse that he had been taking. They also changed his antiviral med to a more potent one, Valtrex. All of these changes are to help the discomfort he has had with his mouth.

Ron has his Monday infusions in a hospital-like room. He has to have a new IV each Monday since he no longer has his central line. Ron is in a hospital bed because it takes a few hours. When the PA and doctor came to the room, both observed the twitching, tremors, and rambling conversation that seems to affect Ron when he is in a light sleep. It concerned them enough that they want him to be off sirolimus, his immunosuppresant for this week. Another change. The steroids keep the GVHD inflammation at bay, but it weakens his muscles. Still looking for the right immunosuppressant that doesn't overly affect his nervous system...so he does not have to take steroids which make him weaker.

Sunday we had traveled to Ann Arbor and stayed at the Med Inn inside the hospital. That was great! His pulmonary function test at 8:00 showed improvement in his lung function. Then he had his bloodwork done, and we were able to go back to our Med Inn room for over an hour before his first doc appointment at 11:00. From there we went to the infusion center in his clinic and were there until 5:00. Ron only has two more days scheduled at this time for appointments in Ann Arbor in the month of July. Yeah!!

Love to all,
Ron & Jan

Coping with Heat Wave 2012

I am looking forward to tomorrow! (the cooler temps) This heat wave has been physically and mentally oppressive. My outdoor time has been limited, and when out, I have concentrated on just watering pots, garden, and other plants enough to get them through this weather. I can't believe how much my energy level is affected.
The heat bothers Ron, but we did sit out on our upper covered deck to watch 4th of July fireworks across the lake. Very pretty, and our bed was only about 25 feet away...and air conditioning even closer!!

Overall, Ron has had a good week. He is on less steroids this week and had no dental or eye appointments. Both of us work to stay positive and keep grinding. It is discouraging at times if we think too much about how our lives have changed. Cooler weather this week will be a boost, and we will be able to go outside again to walk.

We will head out to Ann Arbor on Sunday afternoon because Ron has appointments all day Monday, starting at 8:00. We were able to get a reservation in the Med Inn which is the hotel inside the hospital. Very convenient for us.

We hope you're making great summer memories as you enjoy family and holiday activities.
Love,
Ron & Jan

Monday Tomorrow: Doctor Day

We will be off to Ann Arbor by 8:00 tomorrow. This is the second of four infusions to help Ron fight the graft versus host disease that affects his skin and possibly his lungs. His skin did flare up gradually during the week, so he is back on steroids. Overall, he continues to progress, and the PT who did his first evaluation re-evaluated him this week. She was pleased with his progress...especially in his legs. He is now focusing on balance, biceps, and walking.

Matt's family is here now at their cottage. (third generation cottage.) It continues to be fun having grandchildren in the house, and Cole will be back in a week too. Niccole continues to cook for us and help with the housework and yard work. I have even read a book! It is still very hard for me to feel truly relaxed, but being able to read a book shows progress. I see many things to do inside and out, but what has been accomplished during a month at home is good. (Niccole even cleaned and organized my garden shed. She has put an impressive amount of trash on the curb each Monday.)

I think our 4th of July might be scaled back a little. How wonderful to be home for a get together with part of our family! Visits with the kids' families has been spread out which makes it better in some ways although it is fun seeing everyone together too.
Have a wonderful holiday!
Love, Ron & Jan