Status Quo

This the first time that we have been away from Ann Arbor for a month in over 4 years, but this week we have appointments on 3 days and a dermatology appointment here in BG on Friday. Ron had had a growth on the back of his right hand removed by a surgeon here in BG about 3 weeks ago. It was a squamous cell carcinoma, so surgical removal was the treatment. His skin has been affected by graft versus host disease, Chronic GVHD. A dermatologist will follow his skin changes which really started during the first week after his transplant in 2011.
The word from U of M Oral Surgery is that Medicare and Tricare will not pay for the extraction of what is left of his teeth which have broken off at the gum line. We are going to go ahead and see a pre op physician Wednesday to first see if he can even tolerate this type of surgery. Amazingly, Ron does not have pain or an infection in his mouth. He continues to be on a regimen of 3 antibiotics along with several other meds. At this time we don't think we will move ahead with a $30,000 surgery. We continue to be amazed with all that insurance has paid for Ron's treatment the past 5 years, and of course we are very grateful. Prior to the dental issues, we have hardly had to pay anything out of pocket for anything submitted for insurance.
Ron and I have enjoyed the NCAA basketball tournament, and now we are excited about watching the Detroit Tigers. Sports are really what Ron seems to follow and retain the best in the short term. Go figure; it makes sense! It is good for him to follow sports. He takes notes as he watches. We also enjoyed the Masters, and Ron even won $75 for first place in the pool we entered! The biggest difficulties are figuring things out--time wise, organizing, spatial comprehension, remembering where he puts things. That will not improve, and his difficulty with balance and walking will not improve, but both of us have learned to be very careful. There are many changes in his persona, harmless but odd compared to who he was. Yet many things are the same, too. I am grateful that he is so easy going and accepting of how things are. He has no difficulty remembering people, and his long term memory continues to be amazing. In conversation, he usually sounds like he always has. #1 Tigers fan:

New Month (First picture: Summer 2010)

Pontoon Picture: Summer 2010

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.

A Date with the Oral Surgeon

I had felt nervous about today's appointment..thinking now that I subconsciously had known that this would be a dead end. We had hoped that Ron would be able to get dentures, but the necessary procedures to make that happen are too complicated considering his overall poor health. Ron has two partial teeth, and the rest have broken off at the gum line. He has no infection or pain with this, but it does of course limit his eating/chewing. That being said, oral surgery to remove all teeth would be risky for him, and it would involve many months of healing. At that point he would most likely not be able to have dentures because of dry mouth and other problems with his mouth tissues from graft versus host disease. GVHD also has also caused skin and lung problems and is possibly a contributor to his brain damage. His ECP treatments at U of M treat the T cells in his blood, so they do not attack his own body as vigorously. Like an autoimmune disease.
We saw an oral surgeon in Bowling Green, so Ron has been referred back to UofM For follow up. At this point we don't think he will have this surgery due to possible complications from surgery, and he would be able to chew/eat less than he can now. And he probably wouldn't be able to get dentures anyway and would have a liquid diet. He wanted to have teeth again, and we had decided to undergo whatever was necessary, but I think we are at a dead end on this issue. Ron is compliant, accepting and luckily has an "oh, well" attitude about things. The fiery old Ron would have been extremely distressed. I felt much like I had when he lost the vision in his left eye 3 years ago. Fortunately his hearing aids have compensated for his hearing loss. So we move forward; Ron's bravery and gratitude for life continue to be amazing.

It is winter!

I enjoyed reading through our Christmas cards today and putting the picture cards in an album that I had brought back from the lake. It already had 2012 picture cards in it---don't know what happened to 2013. One thing is certain; they are NOT thrown away! I am sentimental to a fault when I try to sort through things, so I tend to just keep everything!

I included a couple pictures of the Super Bowl Sunday snowstorm at our Michigan home. It finally looks like winter wherever we go! We have a plowing service at both homes, but two of my neighbors here in BG have also shoveled for us. I am not tired of it yet! By this time last year, I had had E-NOUGH!
Ron and I finally had our "Christmas Outing" last evening. Life and weather kept happening, so we had to wait until the time was right. The many trees with white lights in the shopping area where we went were still lit, and it was beautiful with all of the snow.

Super Snow, Super Bowl 2-1-15

Jan is pictured in the calm before the storm. The 2nd picture is a Super Bowl party in Iraq. I am sure that I will have more pictures in the morning! We have over a foot of snow--still snowing and blowing most of the night. Tomorrow will be the first day that we have had to cancel a doctor or treatment appointment for Ron since 2010 when Ron was first diagnosed with leukemia. Tuesday's appointments are in question too!
We will be adjusting our calendar but am not sure how that will work yet. I have learned to be flexible. I am not going to drive if the roads are bad; I had my last white knuckle drive last winter. I did think about our Ford 150 today but know it was not sensible to keep 2 vehicles for one driver. It was good in the snow with its 4 wheel drive. --the Edge not so much.
Ron continues about the same; some of his difficulties fluctuate somewhat but no crisis. His spatial and problem solving difficulties impact our lives the most, but some things he seems to relearn. I have learned to not point out or over-coach things that really don't matter. He had gone out in the snow and cold again without a coat and would often carry his gloves instead of putting them on, but those problems are under control now. I am sure people wonder at times why he wears what he does. (and why I don't intervene) He almost always wears his two gold chains with pendants and now has a beaded chain for his glasses. (that is so not-Ron) His clothes are sometimes soiled with food or drink and mis-matched, but most of the time he looks sharp like he always did in the past. As his prednisone has been tapered, his diabetes has improved greatly, and his face is closer to his normal contour. He is also not itching like he has within the first week after his transplant. I don't know if he is not sensing it like he did or hopefully, the graft versus host disease is not affecting his skin so much. I am grateful for these positive changes. Grateful for many things.
Love, Jan

Congrats to Ohio State Buckeyes!

Well, that was unexpected as the Buckeye football season unfolded! We had a good time watching the bowl games and especially Ohio State. On game day, we wore our Buckeye apparel to U of M for Ron's treatment. Seriously, I got booed two times.
We haven't had much of a winter, but a most beautiful morning is pictured above. The frost clung to everything and then sparkled in the sunlight. Gorgeous!
Ron is hanging in there! He has had a touch of something that has slowed him down a bit, and he has lost about 12 pounds over the past 2 months, but it has not caused an acute situation that required an unscheduled doctor visit. We stopped going to the Community Center to walk and use exercise equipment, but we do get out to walk while shopping and even took a trip to Hollywood Casino which is only 20 minutes from our BG home. We also went to a Falcon basketball game…only saw the 2nd half because someone had the time of the game mixed up. Luckily, brother-in-law George saw the score scroll across the TV, and we hurried up and departed! We will probably do that again; they have excellent accommodations for handicap seating.
I continue to have a caregiver come and stay with Ron, so I can go out for a 3 hour block of time--once or twice a week when we are in BG. She is the best! She bakes things for us and cleans while she is here. It is a huge help to me in many ways.
I have an appointment set up for Ron to see an oral surgeon in February. In mid-February, he will be finished with his 3 months of blood thinner injections. (I will be so glad; I really don't like giving belly shots.)
I just put the Christmas tree and other decorations away this weekend; I was ready. Time is passing by quickly this winter, and I am still waiting for one big snow; one would be enough.
Love, Ron & Jan

What a relief it is...

Every now and then I can feel a shift in how I feel about things. Yesterday was such a day because we made it through the trips, the holidays, and through the immunity infusion IVIG without a hospitalization. The antibodies that Ron received in the infusion are hard at work; I am sure; to help fight any illness that is/was on the horizon. The flu is an issue here in Michigan, so Ron wore a mask at the hospital yesterday when he was there for appointments. We were gone 8-6. He has a chronic cough, so I am sure other patients and visitors were relieved to know he was wearing a mask too! We go back 2 days next week for his ECP light treatments, so follow up bloodwork should show his white blood cell count back in a normal range. This is actually a routine to us, and even we feel good about being back in a routine.
To explain the pictures:
Ron has premeds before the IVIG infusion, including steroids because he had had hives twice and once spiked a temp during transfusions of platelets and red blood cells, so he has tylenol, benadryl, and a medrol infusion before the IVIG which is antibodies from over 1000 donors. (not a typo-- the antibodies are from donor plasma) Ron is wearing his Detroit Lions knit cap, and I have no idea why it looks so odd in this picture. After the test dose of IVIG, he then is given the large dose--the glass bottle. With bloodwork, seeing the doc, and having the infusion in a hospital-like room, we were in the U of M Mott Hospital Adult Bone Marrow Clinic from 9:15-4:00, but like I said, what a relief I felt to be at this point. His next IVIG is scheduled for February 19. Keeping his immunity up will hopefully keep him from developing pneumonia again or another illness.
Whew!!
Love, Ron & Jan

Happy New Year 2015!!

I don't think I had ever realized how much reflection and anticipation I experienced at the turn of the calendar to a new year. It usually was a pleasant review of the year's accomplishments and making broad goals and plans for the new year...and throw in a new year resolution or two. This year I struggled to look ahead with joyful anticipations of plans for the new year. In fact, it felt daunting at times. Five years ago at this time we were making plans for a trip to Savannah and then to Florida to break up our Michigan winter. Ron was already experiencing the first symptoms of acute myeloid leukemia a month before our trip. By the time we were in Florida, he was quite ill but did not agree to see a doctor until we returned to Michigan. He was hospitalized that day and transferred to U of M Hospitals. And our journey began.
So where are we now, and what can we expect for 2015? We have endured a lot, and so I think I tried to look at the whole year at a glance, and that was overwhelming, so I am starting to chunk and compartmentalize. It makes things manageable to be able to do this. The unknowing is both a relief and a stressor, so I start to look at smaller chunks of time and disregard the big picture because there are too many unknowns. I have put a lot of thought into this strategy. The fall trip, the Thanksgiving trip to Virginia, Christmas shopping, preparing boxes to mail, Christmas festivities, Christmas cards, decorating, etc. were projects that chunked up the last 3 months for me. Then I had to face the new year and its unknowns head on. I, at first, tried to look at the big picture too much, and that is impossible to do in our situation. There is no way to know what to expect, but in all likelihood there will be more health crises. And we will do what we need to do and find joy in life experiences along the way.

Holidaze 2014

I am still trying to appreciate what I have accomplished and not what I have left to do!! The Christmas cards continue to be a work in progress. We do have some beautiful memories of this holiday season and also continue to reminisce about Christmases past. Also I am a year older and feel every day of it, so I am going head to head with my sweet tooth. Comfort food has been too much a way of life for me!
Below are pictures from our Christmas Eve gathering at Jessica's parents home after Christmas Eve services at their church. Not too long after this picture was taken, Abby and Lily were having their Christmas morning in Germany--Lily's first Christmas; she will be one year old New Year's Day. Da-da, who is in Iraq, is missing these special days this year. I have been able to text with Andrew on Christmas and my birthday. After only having MREs to eat since early December, the Marines came to the rescue with a traditional Christmas dinner. Andrew said that he will never look at a washer and dryer in the same way since he has been doing laundry in a bucket.
College football bowl season is underway, and so both of us enjoy the games, and I am wrapping up my Christmas cards as I watch games the next few days. We will stay in BG for awhile in January--at least through the next round of doctor appointments in Ann Arbor. No snow yet in December, but that may influence travel plans in the next few weeks. There was not even frost, so I couldn't call it a white Christmas this year.
Enjoy these last few days of 2014; find time to relax a little and appreciate your way of life and all you have. Love, Ron & Jan

Go Buckeyes!!

Merry Christmas and Happy Holidays to All

I have always loved decorating for Christmas, and Ron has always loved "the lights" especially. Trying to get a good picture of our outside lights was impossible, but the picture of the tree turned out well. We have trees at both homes this year. Since we are in the Villa for the holidays and the BG Hovers will celebrate with us, I brought the majority of our decorations here.
You would think that I could get my cards mailed on time, but I am still working on them. It used to be a project that we did together, so now I really appreciate that (in the past) Ron prepared all of the envelopes. He also motivated me!
We have joined the BG Community Center which is only a couple miles from us. I am taking yoga, and Ron and I go together to walk and use some of the machines. Both of us enjoy going.
This time of year brings on a variety of emotions. Remembering holidays of past years can make me feel thankful, happy, warm, joyful, and a bit melancholy all at the same time. I am sure that is true for many. Very normal I think!
So I hope that the holiday season is joyful for you, and if you have had changes in your life, I hope that you can find peace with those changes.
Remember that not every Da Da (and every Mommy) is able to be home for the holidays with family. Thank you for your service and sacrifice to protect our way of life.
Love, Ron & Jan

Milestone

Ron had his 99th and 100th extracorporeal Photopheresis treatments this week at University of Michigan Hospitals (Mott). These treatments control the effects of his graft versus host disease which is like an autoimmune disease. His new bone marrow attacks his own body.
Ron often wears Michigan gear when at the hospital. He has told his doctor that he is a spy for the Buckeyes. Still has his sense of humor!

An Eventful November

I hardly know where to begin! Looking back, it was a good month even though we had a couple bumps in the road. Early in the month Ron developed a more persistant cough, and Dr. Mag ordered a sputum culture which showed that Ron had two strains of pseudomonas in his lungs. We opted to try a course of a new antibiotic at home rather than a hospitalization. Ron has frequently had atypical outcomes. Levoquin caused him to develop an itchy rash and achilles pain, so after 6 days, the antibiotic was changed again...same family. His lung congestion did improve, and the rash resolved. A week before our planned departure for Virginia, both of Ron's legs had swelling, and after an ultrasound, bloodclots were discovered in both, so he is back on the "belly shots". (Blood thinner) As we worked through the process of finding the right dosage, our trip shortened, but a week remained for a good time! And we had a great trip! We spent two nights in Gettysburg, and our sightseeing day was 70 degrees. (Two days later when we were at Ft. Belvoir with Matt, it snowed!)We now have a wheelchair which we used when it was necessary to walk a distance. It also comes in handy for Ron to push with our stuff on the seat. Then we spent 3 days and nights at Matt's, including Thanksgiving day when Niccole, Mike, and Cole joined the celebration. Two families of friends also came, so there were 10 adults and 9 children. Matt's family also ran the turkey trot in DC on Thursday. The trip was a whirlwind and required packing a lot of medical supplies and way too many clothes, of course. We returned to Gilead Lake for the weekend. So very glad that we were able to make the trip.
Christmas preparations are underway now; I put lights on two bushes in the dark last night. Our early cold temps and snow seem to have put everyone in the holiday spirit early. Enjoy your family, friends, and holiday traditions in the coming weeks. Take time to reflect on your blessings of 2014. Our blessings were kicked off on January 1 when Granddaughter Lily was born.
Love to all, Ron & Jan

Gettysburg, PA; Springfield, VA; & Thanksgiving

Seem Like Family

Dr. Mag and Tim (in that order in the picture) do seem like family. We have spent a lot of time with them and been through several crises together. We are so thankful that they have been the heart of Ron's medical team at the Bone Marrow Transplant Clinic.
U of M has taken precautions and been providing eduction about ebola. There is always someone to greet you when you enter the hospital, and you are asked questions about your current health status. The sticker on Ron indicates that he has been screened. The questions now include travel to Africa or being anywhere outside the country. You can see a flyer on the back wall of this picture, and educational handouts are on tables in the waiting room. The many extra things the staff does to be welcoming, professional, and compassionate are a part of their motto: The Michigan Difference.

Taking time to say thanks: Happy Veterans Day!

We were in Ann Arbor for doctor appointments on Veterans Day. Between appointments, I took Ron to Applebee's for lunch. We had eaten there numerous times in the past because it is attached to the Hampton Inn where we stayed before we bought the villa. For dinner we met friends at The China, so we had a full day.
Ron's new antibiotic for his lung infection has probably caused side effects; he has a history of having difficulties with various medicines and blood products. At first it was thought to be a GVHD flare because of a new rash, but now it would seem (to me) that the levoquin caused a rash, achilles/tendon pain, and bloodclots in both of his legs. All of this developed in the week that he took levoquin. I had called the clinic with concerns last Friday, and they changed him to Cipro. His lung congestion has improved; the next treatment would be in the hospital with IV antibiotics, but that is not in the plan now. In fact, Dr. Mag has encouraged us to go ahead with plans for our trip to Virginia.
Ron's chronic graft versus host disease has damaged his lungs, so he is susceptible to pneumonia. It also affects his skin, mouth lining, and eyes. His dry mouth has resulted in almost all his teeth breaking off. We were supposed to see the oral surgeon today, but that had to be postponed.
Ron's lower legs and feet had been swelling A LOT, so Dr. Mag sent him to ultrasound today, and they found the bloodclots. (even though his legs were not warm to touch and the swelling was in both legs, and usually DVT is one leg) So now I am back to giving the dreaded lovenox belly shots everyday. Before Dr. Mag ordered the ultrasound, he asked Ron if he would agree to the injections if they found bloodclots. I told Ron that it was his call, so he is still in the fight. Although his mental functioning has changed, I think he can still make his medical decisions. To give you a couple examples, he is into cutting up things. He cuts washcloths into very small washcloths, he cut the fringe off one side of my new throw for the couch. He cut the fringe off a winter scarf (his) He tears napkins into fourths usually, and is into wearing gold chains. He is obsessed with watches and clocks. He has wanted to buy a grandmother clock, but I convinced him that a new mantle clock would be a better choice, so it arrived today from Amazon. Overall, pretty harmless stuff.
I am rambling…
Love to all,
Ron & Jan

Good-by October 2014

November has charged in with colder temps and spitting snow. We are enjoying the first few days of this month at Gilead Lake. We have looked at two smaller properties here on Gilead Lake, but the stress of just thinking about clearing out this property was beyond what I am ready to do. In many ways this house is perfect for us because everything we need is on the street level. My ideal situation would be lower to the lake and an attached garage. (and SMALLER…less to take care of)
Ron has been having some increase in lung congestion, so his antibiotics have been tweaked. He takes bactrim and levoquin now. Otherwise, things continue about the same. He recently had his immunity infusion, IVIG, and he is having his light treatments every third week, instead of every other week which we had done for the last year. That will give us a 3 week break after Veterans Day, so we hope to travel to Virginia for part of that time to visit Matt's Family, Niccole, and Cole.
Love to all,
Ron and Jan

Making Memories October 2014