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

Fall Trip Pictures

Fall Trip 2014

We have returned from our trip "up north". It is important for both of us to step away from our usual routine and in this case, just enjoy the beauty of nature. We have several places that we enjoy revisiting since we started this fall tradition in 2008, the year that we retired. This year we stayed in Traverse City 3 nights. The fall foliage was stunning this year--when the sun was out to enhance the colors. We revisited our favorite shops, Christmas Cove to go rocking, Barb's Bakery, Highway 22 scenic drive, and new places in TC. We took the walker, so Ron could walk more efficiently when we had farther to walk.
A college friend visited us soon after our arrival in pouring rain. I had walked Ron to our room, and when I returned to the car to get our bags, someone called, "Jan, is that you?" What fun to reminisce and catch up on family news!! We had texted before the trip but didn't know if a visit would work out.
Today was work day! I picked up the young Amish couple who helps us at 7:45, and we cleaned and took out the docks. I have been doing laundry from the trip and of course, watching football. Good day for the Spartans and Buckeyes! We are going to take a ride tomorrow here in the Gilead Lake area. By the time we return in November, the countryside will look entirely different. Stark. The harvest has been in full swing. Semi trucks park in the fields next to the road as the huge farm machinery pick the corn or soybeans, then transfer it to the trucks. In our county, agriculture is the largest industry...primarily corn, soybeans, and surprising, gladiolus. The flower fields are beautiful when in bloom.
Our medical life will resume next week, but it has been such a treat to have three weeks without doctor appointments. Ron seems to be about the same day to day. With one exception, this is the first time in 18 months that Ron has gone 3 weeks between ECP treatments in Ann Arbor. Hopefully, we will be able to continue 3 week intervals without a GVHD flare.
Think I will post this from my IPad and then add 2 or 3 of my favorite pictures that I have downloaded on the computer.
Love from Ron & Jan

Preparing for Winter

The pontoon was picked up today for winter storage. I like knowing it will be cleaned, covered, and stored until warm weather returns in the spring. I have also been doing some trimming and other winterizing. We have a second well and pump on the garage side of the road. I have drained the garden hoses, the pump, and winterized the well. I am putting away summer clothes and summer "toys". Because I have always liked Fall, I don't find this to be a grim task, and I will soon be excited about the first snow. I still enjoy using the riding lawn mower and am mowing the yard in sections. The fenced in former garden area was the first part.
Ron and I have made day trips to Shipshewana, Indiana and Coldwater, MI. We are snapping pictures of fall foliage and have pulled the sweatshirts out. Reading has been a high priority too. No doctor appointments for almost 3 weeks is a real treat.
Love to All,
Ron & Jan

Feeling Nostalgic....

I used the word nostalgic today to describe how I was feeling as we traveled through Amish back roads to Shipshewana, Indiana. It was a combination of beautiful fall foliage on a sunny day, stopping to take pictures, going back to a place we had visited many times in good health. It seemed like the perfect word, so I even looked up its definition to validate its choice. It could mean looking back at a happier time with a melancholy perspective. Exactly. With that being said, it was a good outing. We visited Eash's, an outdoor living and also indoor store with a variety of household items. Ron saw a sign for puppies and wanted to see them, so we entered a puppy world in a little red barn. I have not been overly enthusiastic about the goldfish he wanted several months ago and that added responsibility. One down, one to go, and that will be my last goldfish. It begs for food worse than the cat! There is no possible way that we could get a puppy!
We had a wonderful Amish lunch, and I quickly visited one more store while Ron waited in the car. He moves very deliberately and slowly and uses a walker when we are out in that type of situation. People are wonderful to step in and help us in doorways, crossing the street, etc. Ron appears chronically ill, so I feel many looks of concern and curiosity when we are out.
What can I say about being at the lake?! I watched a deer grazing by our garage, saw a huge raccoon cross our deck, and the beautiful full moon casts a river of light across the water. I looked outside for the blood moon this morning at 5:00 but was a little early to see it at its best. This is our first two week break from appointments-- with one exception-- for over two years, so it is a treat. Next week we make our fall trip up north to Traverse City.
Last week's appointments went well, and although Ron has a chronic cough, his lungs are working adequately. When we are here at the lake, I continue to sort and throw out unneeded things we have accumulated. Unfortunately, I have always loved "stuff" and find it hard to get rid of things because " I just might need it later."
We are hanging in there, knowing that all the fall beauty will soon transform to stark November. ...still planning on a November trip to Virginia.
Love, Ron & Jan

#44 In Sickness and in Health

Our wedding day, September 26, 1970, as we leave the church and pictures 6 1/2 years later: Niccole, Matthew, and 28 year old Ron holding Cale and Andrew.

We celebrated our 44th wedding anniversary today! Ron had told me that he just wanted it to be the two of us; maybe he thought I was going to organize something more for today. When we are at the lake, we have good times with our siblings. Earlier this week we had dinner and a nice evening (pontoon ride on Wall Lake) at my sister's home. My brother and his wife were there, too. Then the next day we spent the day with Ron's brother and wife. We had not yet seen their new lake home. We enjoyed being together and took a pontoon ride with them on Sommerset Lake.
Ron's health status has definitely leveled off again. He is coughing more and fell once here at the lake house. I will be extra aware as sometimes these are symptoms leading up to respiratory infections. We are in Ann Arbor two days this week for ECP, so he will have blood work and see his doctor there if there are concerns. On Monday, Ron has his new patient appointment with an oncologist in Bowling Green. He also has 2 PT sessions with his final evaluation. We will be in BG for a week and then back to the lake for two weeks. This is the first month that Ron will have 3 weeks between ECP treatments. His prednisone had been tapered at the beginning of the month and one daily antibiotic was stopped.

Hope September has been good to you! What beautiful fall weather we have had in Ohio and Michigan! Living in two places is good. I look forward to coming to the lake, and I am excited about going back to BG this week. Ruth, my Amish cleaning girl, was here today, so I am leaving a clean house behind. She was in one of her brother's wedding earlier this week. When the newlyweds and the two couples that witnessed at the ceremony traveled to the site of the reception, they rode in 3 pony carts. She said the pony pulling her cart was small and chubby…thus very slow. I would have loved to have seen that! I asked her if the reception had a lot of people. She said, not as many as ours, but there were probably 700. I have learned a lot about Amish weddings from her. The bride's colors for this wedding were lavender and gray with yellow accents. They had sunflowers with small lavender flowers on the reception tables.