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.

Falcon Fan

Overdue Post

The realization of passing the three year anniversary of the bone marrow transplant and being where we are as far as recovery weighed on me. Throw in Labor Day, Ron's 66th birthday, and plotting out all of the appointments in September brought on a mixed bag of emotions. Labor Day always feels like the end of summer, but I have always loved autumn and the change of seasons.
Ron has been "about the same" all summer; the last crisis was the mid May hospitalization. He had a check up with Dr. Mag and Tim this week. He has been taken off Vantin, one of the three antibiotics that he has taken for months and months. Starting in October he will taper his ECP treatments from every other week to every third week. It feels like a move ahead but scary at the same time. Any flare of GVHD or an infection is a setback that is hard on him. Me too.
We are moving ahead with scheduling routine dental and vision appointments back with our previous doctors in Bowling Green. Paperwork is in process for Ron to have an oncologist here in BG, so he can have his IVIG immunity infusions in the Cancer Care Center here. Next Monday we will go to AA for an IVIG, but hopefully, his October one can be done here. That will be one less day trip to U of M Hospitals.
In addition to the immediate issues mentioned at the beginning of this blog entry, our son, Andrew has been deployed to Baghdad from Kuwait. His surgical team had been sent to Kuwait as a readiness maneuver, and it was unlikely that they would be sent to Iraq. However, due to specific needs there, two of them have been sent to Baghdad. Andrew is an O.R. Nurse, and he was needed to fill that position there. That makes the little black cloud that hovers around me a little larger. I still do enjoy many things, but there is always a heaviness of worry during deployment.
Ron and I are looking forward to a trip up north to see fall colors in mid October, and we are also planning a trip to Virginia in November. Both Matthew's and Niccole's families live in Virginia. Lisa and daughters Abby and Lily continue to live in Germany where Andrew will return from his 9 month deployment. That is about 7 months away. It is wonderful to live about 2 miles from Cale's family; they helped us celebrate Ron's birthday last evening, and we are gearing up to watch the Buckeyes play Saturday together. Good medicine to spend time with grandchildren!

3 Year Anniversary

Ron had his bone marrow transplant 3 years ago today: Wednesday, August 24, 2011. I went back in the blog and read my notes; I have to admit that it made me cry. We were so amazingly grateful for the opportunity of a transplant to cure Ron's leukemia. We seemed innocent and naive about the possible consequences and complications because we were. Someone once asked me if I regretted that Ron had had the transplant. The answer is no regrets. I would always have wondered if he would have had a cure for his leukemia and resumed his former life. (if he hadn't tried the transplant) So to this point, he has been cured but at a high price to his quality of life.
Remember that the decision for the transplant was made with the Ron who is in the picture below.

Just Remembering...

I took this picture of Ron on our fall trip 2010; he was in remission and 62 years old. During his 9 month remission he returned to officiating high school volleyball and basketball. He ran a 5K at Thanksgiving.

Ron Hover Update

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

Hover Girls

Things are very quiet in the villa today with only Ron and me here. I didn't have much energy and couldn't bring myself to finish putting the legos and other toys away. We have had a great time the past few days with Lisa (Andrew), Abby, and sweet baby Lily visiting from Germany. Kate, William, Anna, and Sarah have also made a return trip to Ohio and Michigan after their move from Tampa to Springfield, Virginia. Cale and his family live here in BG. (Jessica, Joey, Jack, and Allison) 8 of the 9 grandchildren together is a special treat for us! Niccole and Cole visited earlier this summer.