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

Rituxan Infusion- 4 consecutive Mondays

I thought I would give more information to you about Ron's infusion...for those of you who would like to know more about it! Niccole, Ron, and I left for AA about 7:00 AM today. His bloodwork today showed that the last week of meds have brought his skin GVHD under control. The T cells from his new bone marrow had been revved up and attacking his skin. The infusions over the next 4 Mondays should sustain his progress. Ron will also have a visit from his BMT doc and PA each Monday.
This first infusion takes 4-6 hours. It is monitored closely for any allergic reaction. This means starting it very slowly and checking BP, temp, heart rate, etc. every 15 minutes at first, then 30 minutes,and increasing gradually the flow of the med. The infusion is antibodies and called Rituxan. It will be effective for many months after the 4 week regimen and should help his skin and lungs (shortness of breath). He will also stay on a low dose of immunosuppressant but discontinue the steroid pills. (This is a good thing.) Of course, we are hopeful that this will be the balance needed to greatly minimize his graft versus host disease. We are getting closer.

Day #305 Since Transplant: Weekend Update

Sunday is slipping away, so I am blogging while Ron is napping. We made our Monday-Tuesday trip to Ann Arbor as planned. Ron's skin flare-up is not being controlled by ointments since he was taken off immunosuppressants about 6 weeks ago, so he is now back on a new immunosuppressant and steroids. (predisone). While he was at the clinic they also gave him an infusion of steroids to knock down the inflammation of the rash/blotchiness of his skin. He was also having changes in his mouth during this GVHD flare-up. He is scheduled to have weekly infusions to treat the GVHD, so we will be traveling to AA on Mondays for the next four weeks. Niccole is staying with us through July, so it will be great having another driver for these day trips. Ron's skin has improved some this week, but it is evident that he needs some additional treatment.

On Tuesday Ron had an appointment with a neurology opthamalogist. There is nothing that can be done to restore any of the vision in his left eye. He did give him a new prescription for his right lens.

We made a lot of progress unloading and sorting boxes this week. It was very hot and continues to be dry, so I am not planting anything else. It takes a lot of time to water my flowers and vegetables, so I have not watered any of the acre+ lawn. It is amazing how I have learned to say, "Oh, well." and just gone on. This week we also had to deal with no electricity for 24 hours and fraudulent use of my credit card. When I mentioned identity theft to my grandson, he said "oh, Grammy, no one could look like you." (I laughed and said now that is the truth!!)

Army friends from Florida visited today, and we had a good time and good laughs as we reminisced about army days and caught up on our families. Now we are taking it easy to be rested for the trip to AA tomorrow. Ron will see his BMT (bone marrow transplant) doctor on each Monday.
Love and best wishes to everyone,
Ron & Jan

Happy Dad's Day & Weekly Update

Happy Father's Day to all you Da-Das out there. We needed rain so badly here in our area that I don't think anyone complained that it rained on this special day. Ron continues to grind. His skin outbreak was widespread enough that I called the clinic for advice, so we are making a trip to Ann Arbor Monday and Tuesday. He already had had an opthamologist appointment scheduled for Tuesday afternoon. Now he will have his bloodtests on Monday and see his BMT doc. He has been off immunosuppressants for six weeks, so this has aggravated his GVHD of the skin and mouth. His eye appointment is 3-4 hours, and we may have a better understanding of the loss of sight in his left eye. We are both very pleased with his physical therapist who is visiting twice a week. He is primarily working on strengthening his hips and ankles which help with balance. He also is working on arm and shoulder strength. He walks mostly with the cane because either Niccole or I walk next to him. Ron also started his dental work this week. He has several teeth that need repair. Many ordinary events of everyday living are more special to us. Going to the little grocery store in Orland, IN, which is about 5 miles from home; seeing the same greeter in Meijer in Coldwater; doing lobby banking in Bronson, MI, with hugs and happy greetings from our friends who work there (yes, we continue to enjoy lobby banking and the personal touch from our home PNC.); watching the sunrise over the lake and watching the sunset out by the garden. The support of family and friends continues to amaze us. We are so grateful for all of you. I plan to at the least blog on the weekends to summarize our weekly events that bring Ron closer to his recovery. It is still a work in progress. Tuesday will be day #300 since his transplant.

On Monday Ron and I traveled back to Ann Arbor for bloodtests and two doctor appointments. His bloodwork results are good. His platelet count remains low, but everything else is in a normal or near normal range. The doctor did start him on medications for GVHD of his lungs because Ron has noticed some shortness of breath. They are asthma prescriptions. Ron's physical therapy has begun at home. He is working on balance and muscle strength primarily. His legs are MUCH stronger. She did recommend for safety reasons that when he walks alone, he should use the walker and not the cane yet. So there is a lot of work yet to do, but we are up to the challenge.

AOL and Blog

I have received assistance to stop my aol address from sending spam. I hope it works! Let me know if you receive additional spam, so I can take further action. So sorry for any inconvenience. My blogger dashboard changed, and it has not been allowing me to skip lines or paragraph. A giant paragraph is harder to read and offensive as a former English teacher. (one of my former roles)

Can you believe it's June???

It is wonderful being home. We are adjusting to how life at home has changed for us and at the same time, appreciating the wonders of nature that surround us. We have been entertained by kingfishers diving into the lake and hummingbirds,cardinals, finches, and other birds that come to our feeders. I have seen deer behind our garage, and we have seen swans and sandhill cranes fly overhead. Our families have pitched in to make it feel like home with gifts of outdoor flower pots and the dock put in. George continues to mow for us, and they arranged to have our Amish ladies clean before we arrived home. Amish girls came a few days ago in horse and buggy selling strawberries, so we have been eating huge strawberry shortcakes. We will get our pontoon boat soon. We have a few vegetables planted in the garden, and I have decided to plant a pumpkin patch again. I guess a lot has been accomplished in our first week at home, but my to do list remains long. I love yard work and gardening but don't want to do too much to maintain. Ron will go back to see two of his doctors in Ann Arbor on Monday. I can judge how well the day is going for him by whether he is walking mostly with his cane or choosing to use the walker at least part of the time. It is a challenge to entice him to drink enough fluids each day. Dehydration makes him feel weaker. We are both learning to make adjustments for the loss of vision in his left eye. If I walk to his left, I keep a hand touching him, but it is better to stay on his right side. His depth perception and reading with ease are diminished. He has progressive bifocals, but I have wondered if new glasses might help his reading. Graft versus host disease GVHD continues to be an issue. He has a variety of ointments to treat his flare-ups but is no longer on pills to suppress the rejection. He has GVHD of his mouth which causes dry mouth and occasional sores. He continues to use his steroid mouth rinse. Chronic GVHD can last for years. Ron's weight is staying in the upper 150s. He eats well and is encouraged to eat high calorie food and desserts, so the result of my stress and joining him in his high calorie food has not had a good result for me! I am so glad to be active again in the yard, gardens, and house. Ron does have some neurological symptoms as a result of 7 rounds of chemotherapy, the transplant, and the numerous meds that he has needed during his recovery. He will start a thorough evaluation and appointments in a neurological clinic in July. He has tremors that vary in intensity...mostly in his hands, and that has made it difficult to impossible to email or text. He has re-mastered using the remote control! He can barely write on some days; other days it is legible. All of that being said, the return of his personality has been quite remarkable. He sounds like himself again but has struggled with the loss of vision in his eye especially and worrying about what could happen next. That seems like perfectly reasonable reactions to what all he has been through. We never could imagined that he would have so many complications, but the leukemia continues to be in remission. Overall, I think he is doing quite well, and today Kitty Boy Blue has started napping with him at the foot of the bed. Good medicine. Love and good wishes to all of you. Bring on the summer! Ron & Jan

Home Sweet Home

It is great being back home at Gilead Lake. Ron continues to cope with physical and emotional issues but I think he is doing well. He is too rough on himself at times. When the doctor took him off his immunosuppressant pills, we realized how much it had affected his persona. He is much more himself now. Moving home-home, both packing and unpacking, has been an extended work in progress. Of course, there is no rush, but I am anxious to have everything put away. I have done a little gardening, but the temperature was near 100 degrees today! Getting past the fatigue caused by the last hospitalization, the last series of doctor appointments, and the move itself has been a priority. Niccole came home from Virginia to spend the weekend with us. She did yard work on the beach area, helped unload the vehicles,and gave us moral support. She is planning to spend 6 weeks again with us this summer. Ron has had one fall since we came home...so glad she was here to help me get him back on his feet. He jarred himself and bruised his hand. An injury caused by a fall is a top concern. When he doesn't follow the safety precautions is really the only time that I get mad at him. Love to all, Jan

Surreal!! Going Home on Day #275 after Transplant!

Most things from our apartment were taken to Gilead Lake on Wednesday by sister, Anne and George. We didn't even see them because Ron had three doctor appointments. The truck was fully loaded, and a hallway of boxes etc. was loaded into their car. (by them). My mission is to fit everything else into the Edge tonight and tomorrow morning. I can do it! Wednesday's appointments were exhausting as we confronted emotional issues, symptom management, and the news that the loss of vision in his left eye is permanent. Ron also had his full pulmonary function evaluation but we don't know the results yet. So, all of this rolled into a long day 8:30-3:30 at the hospital. Today he only had physical therapy at our apartment. His physical progress is moving along well now. He walks unaided in the apartment, and mostly uses the walker outside but is transitioning to a cane. We will be home for 10 days before return appointments, so we are planning to see if progress can continue without a physical therapist...just using guide sheets given to us. A therapist could be prescribed again at the June 4 appointment. We are optimistic and so happy tobe moving home-home to Gilead Lake. Love to all of you for sharing this two year journey with us. We never felt alone, and whether you have been a reader of the blog,or one who sent cards or notes or prayers or good wishes or cookies or flowers or food or texts or emails,or inquired about our well-being to our family members, etc., etc., we are thankful and indebted to you for making a difference.

Moving out of apartment Friday!!

The week is underway. Today we had a long appointment with Ron's Bone marrow transplant doctor and physician's assistant. We had many questions about his last hospitalization, changes in medications, and the loss of vision in his left eye. The plan is in place to go home on Friday. That would be home-home to Gilead Lake and permanent. Of course, there will be frequent trips back to Ann Arbor. Remaining this week are 3 doctor appointments (symptom management, pulmonary function, and opthamologist)as well as 3 physical therapy sessions. Last weekend was beautiful at the lake. We ate on the deck and mostly just enjoyed being there. Family is taking good care of us in many ways...very nice to have the yard work done and house cleaned, so we could just relax as much as we wanted. There was nothing that had to be done, but we did pick up some flowers in Bronson and took care of a couple minor projects. We can hardly wait to get home on Friday. More later, love to all--Ron & Jan

Continuing to do well...

After the occupational therapist made her visit, she signed off on us needing any more adaptive equipment, education in safety issues, or care-giving. So Ron will only have a physical therapist during the remainder of our time in the apartment. He is taking responsibility to exercise on non-therapy days, and we walked even further today. I can now see a little muscle definition in his calves and his skin is beginning to tone. His legs were/are so thin. During Ron's last hospitalization, they took him off two more medications, and that seemed to help clear his thinking quite a bit. One was his med that suppresses the conflict between his transplant cells and his own cells. Ron continues to show evidence of graft versus host disease of his skin. There are ointments to treat cGVHD of the skin rather than pills, so that is what is going on now. Some of his skin is reddened like a sunburn, and there is slight rash a couple places. He seems much more like his old self; the words feisty and cranky have even come to mind...much better than docile and lethargic. We are going home for the weekend, returning to AA for appointments everyday of the following week and hope to get the clearance to make our permanent move Memorial Day weekend. Holding our breath, Ron & Jan

Summer Weather in Ann Arbor

Back at the end of March I had posted this view from our apartment in Ann Arbor during fall, winter, and spring. Here is a summer view. Ron is continuing to recover well from his UTI and staph infection in his blood. He is on a course of an oral antibiotic for 14 days. Amazingly, he never had a fever with these infections but became extremely weak, confused, and lethargic. At the same time he was losing the vision in his left eye which was probably unrelated to the infections and a separate event due to low blood pressure perhaps as he slept, causing a lack of oxygen to the optic nerve. We will never know for sure. At times it is a gray disc blocking vision in most of the eye but being able to see a little around the edges or see outlines of people. Usually, he only sees black in that eye. He was not able to see the large E on the eye chart when the opthamalogist examined his eyes. We continue to be on track to go home-home in 2 weeks. We have adjusted the actual day of departure slightly because the physical therapist made her first at home visit yesterday, and she will work with him 2 weeks here. Because he is also going to have occupational therapy which needs to be in the apartment, all of his therapy will be in the apartment instead of going to an out patient facility. (insurance issue) That is okay...another way to avoid germs. Now the plan is to move home on Friday of Memorial Day weekend. Therapy will continue when we are at Gilead Lake. Ron is walking with his walker and can take some steps without it, but the therapist told him not to do that yet to ensure that he would not have another fall. When we walk outside, he uses the walker which has a seat, so he can sit and rest if needed. We are getting there! Love, Ron and Jan

Two more weeks in Ann Arbor??

Things are going well at the apartment. Both of us have been taking naps and enjoying relaxing on our own schedule. (within reason!!). It is also good to be catching up on household tasks and starting to organize our belongings for the move home. Ron did a great job of exercising this morning, and we went on a walk outside early this evening. Both occupational and physical therapists will come to the apartment Monday, May 14 to evaluate and work with Ron-- probably for about two weeks. Then we plan to move home-home, and he will continue to have out patient therapy in Coldwater. This all seems very probable today. He also has several doctor appointments during the week of May 21 and follow-up appointments are starting to be scheduled for the months to follow. We are planning a test run to Gilead Lake the weekend of May 18-20, returning for therapy and appointments starting May 21. Part of Ron's therapy will be learning adaptations necessary due to the loss of vision in his left eye. His 5 weeks in Heartland Rehab did significantly strengthen his muscles. I am guardedly optimistic that he has finally turned the corner in his recovery. Love to all, Ron & Jan

An Amazing Turn-Around!

Our hospital room belongings are packed, and we are waiting for Ron's IV antibiotics to finish. He is going to go on pill form antibiotics and have both IV lines removed. His Neostar port was removed yesterday. He is on less medications overall and going home to the apartment with me. PT and OT will start in the apartment on Monday. We are back on track to move home-home by the end of the month. Unbelievable!! Thanks for your prayers, good wishes,and positive thoughts that you sent our way. Love, Ron & Jan

Getting Better!!

Ron has improved in amazing fashion since Monday and Tuesday's events. The primary cause of his physical changes as well as the increased mental confusion seems to have been more related to his infections than a neurological event. He is now able to take short walks in the hallway with his walker. Monday and Tuesday it took two people to help him sit up in the bed, to stand, and to transfer him to a wheelchair. He had to be moved guerny to bed for various tests by 4 people using a draw sheet under him. His balance and coordination were severly affected. He was only minimally communicative and very confused. I have been sleeping in his hospital room, and when I woke up Wednesday morning and turned to look at him, he said, "good morning, Teach." in a strong voice. I couldn't believe it. It was like someone lifted a curtain...not to say that all confusion is gone, but he is amazingly better cognitively and physically. The physical therapists and occupational therapists who have evaluated him here and worked with him have gone from believing that he would require intensive acute therapy in a hospitalized setting to thinking we will go home to our AA apartment, and he will have therapy at an U of M out-patient facility probably 3x a week. He will also have occupational therapy in the apartment, so both of us can learn coping skills with his vision loss in his left eye. The same therapy will then continue at home-home by the end of the month. (to simplify things, we call the AA apartment home and call Gilead Lake home-home) battery low on iPad; will post and close, so I can get this additional info out. Love to all, Jan. (Ron is asking me questions about the Tigers!!)