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.

Lily Hover Baptism

Lily Hover is a sweet, happy baby; it is hard to believe that she is 7 months old already! The group picture is of the Wojo grandchildren and grandparents. I have no idea why I didn't suggest a Hover picture! Cale, Jess, Joey, Jack, and Allison were there too! For those of you who might not know, Andrew is deployed to Kuwait, so Lisa and the girls are here for a visit before school starts. A party at Lisa's parents' home followed the baptism. It was enjoyable to get together with family and family friends.

A Busy 7 Days

Ron had his bloodwork done, had an appointment with his bone marrow transplant doc and PA, had two ECP treatments, had a CT chest scan, pulmonary function test, and appointment with his pulmonary doctor. Tomorrow he will have his immunity infusion. His health issues are pretty much stable at this point, so a decision was made to taper his prednisone slightly. He has been on steroids for almost 3 years now.
His pulmonary tests show that his lungs work about one-third of what would be expected for his age. He always has some congestion, so he is going to have a new device for at home treatment to help him clear his lungs more effectively. The pulmonary doctors were also concerned about his teeth which at this time are mostly broken off and decayed. They wanted him to see a dentist-doctor specialist, but Ron told them no at this time. When she looked at his teeth, he had a Jolly Rancher in his mouth. He still loves his candy!
I am glad that we are trying to taper the steroids. Ron's skin is very thin and tears easily. I am almost an expert at treating and bandaging skin tears. So we are cruising at the same level right now. Ron continues with his physical therapy but will probably continue to depend on his walker for stability.
I am trying to feel content that we are not in a crisis.

Summer Vacation

I guess I have been on vacation from the blog! We are back in BG for an Ann Arbor week. Things have been stable, so it is probably about time to make another meds decision. Ron has been on the same dose of prednisone since February. We will see Dr.Mag on Wednesday and the pulmonary doc on Monday, so we may or may not have new information. Ron also will have his next two ECP treatments. He has PT this week in BG. He walks mostly with the walker but some with the cane; we are being cautious.
Had a great time reconnecting with some of my cousins at a breakfast on Sunday. We shared stories and pictures, and I can hardly wait for more of that. I have 26 first cousins on my Dad's side of the family, but many of my cousins' children are closer to my age. There are several sets of twins on that branch of the family tree. The next set of twins is due to arrive in September.
Things have been quite hectic since May, so a good rule of thumb for me is if I can concentrate to read a book. Finally! I read a good book last week: Saving CeeCee Honeycutt. Parts were funny, but the message to me was more of freeing and lifting yourself out of a situation where you have no control. That book was one of those that can be many different things to different people. I recommend it!
The black cloud of deployment is back with me. Andrew has deployed as a member of an airborne Forward Surgical Team. As I recently read, "For those who have been there, no explanation is necessary. For those who have not, no explanation is possible." A friend told me that that is true not only of soldiers but also parents of soldiers. It truly is like a lingering cloud that can shade everything else.
Ron and I will soon be meeting our 9th grandchild, Lily Hover, who was born New Year's Day in Germany. Lisa, Abby 7 years old, and Lily almost 7 months old are flying home for 3 weeks to BG. Lisa's parents live in BG too. Kudos to Lisa for being an amazing Army wife! There are many sacrifices that go hand in hand with the extraordinary life experiences of military family members.
Love to all,
Ron & Jan

Check, check, check

Washer, dryer, refrigerator, dishwasher, miscellaneous household items--check! Things are quite well set up in our Bowling Green condo, and we have made Ann Arbor trips on four days from here. The plan is working well. The trip is consistently 65 minutes. Ron is doing pretty well in his recovery from May's flu, pneumonia, and fall. He is walking some without the walker but does use his cane. He has PT at the hospital here in BG during the weeks we are here. He has a chronic cough due to permanent lung issues, and because he has been on steroids so long, he has deconditioning of muscles and frequent bruising.
Mentally his deficit is in executive functioning....the mental task related to help planning, organizing, paying attention to and remembering details, and managing time and space. This is a permanent change in addition to some quirky behaviors and personality change...yet much is the same too. He continues to be a complex man.
Ron's immunity was checked this week with an IGG bloodtest, and he does not need his next IVIG infusion yet. That was a change in his trend, so we are hopeful that he might be starting to get more immune support from his bone marrow.
It has been quite awhile since I have felt like we are back to just "grinding". I will take that!
The caregiving service is working out well. She comes on Monday and Friday afternoons, and I run errands and have time to do some socializing too. Looking forward to more of that!

Happy 4th of July

Thanks to all who have come before us to make the American life style possible! And thanks to all serving now who sustain our way of life. We are so very grateful.

Peaceful Gilead Shores Drive...

What is it about being by the water? When we first arrived Saturday, all I could see was yard work that I needed to do! Trimming mostly, but I enjoy that, and it felt really good to ride the yard tractor and break a sweat doing some outside work. Good for the soul; my mood went from bittersweetness to peaceful. Matt is here at Wee Cottage, and the rest of the family returns tomorrow. Niccole and Cole will travel tomorrow…hoping they will arrive to watch part of the World Cup game with us. Go USA!!
Today I am doing some indoor work, too, and have promised myself an afternoon nap. Ron's eye is improving. The swelling is gone, and the redness is fading. It was a doozie. Both of us are settling in to enjoy what the next few days bring.
Love, Ron & Jan

Our Plan

I think our plan is coming together! It looks like our weeks in BG will also be our timeframe for all appointments. Hopefully, I won't need more orthopedic appointments, but any physical therapy for Ron and me will be scheduled here in Bowling Green. My future dentist appointments, car servicing, etc. will be done here in Ohio. Then when we are at the lake, it will be a vacation from all of that driving and appointments.
Ron has speech evaluation tomorrow to help with thought processing. I am on the fence about doing that until I see what that means and what his needs are. Then I have caregiving time in the afternoon and our new dishwasher is supposed to be installed.
ECP light treatments had a glitch this week. Ron bruises easily due to being on steroids so long. His skin is thin and tears easily. Along the same line, coughing can cause eye bleeds which happens occasionally. He developed an eye bleed in his right eye..the one that has vision, so after being seen by 2 at Mott, instead of ECP on Wednesday we spent two hours in Kellogg Eye Center in AA. We did not get back to the condo until 8:30 last night and had to leave at 6:45 this morning for a treatment as he had been cleared to do so. He did see his regular eye doc, and of course, ECP nurse and PA did not want to make the final call because risking vision in that eye too would be horrible. Along the way in Kellogg he bumped his hand, and we had a new skin tear to deal with. All is under control now. It felt wonderful to get back to BG; it is a 65 minute trip. I loved not having to pack but learned to always carry at least a day's worth of meds with us and his first aid kit..beyond just bandaids. We probably would have bought tooth brushes and stayed at the Hampton and just slept in our clothes, but I didn't bring meds. Some of the things I've done I could not have imagined before...like going to the orthopedic doc last week in my bedclothes!
Rambling,
Jan

Abby's Sunflower: Summer 2013

I have planted seeds from Abby's sunflower at Gilead Lake and will plant some here in BG tomorrow.

An Eventful Week

I hardly know where to begin. I went back and read my last blog entry to see where I had left off. Cale had set up some services to help us, and Dr. Mag had given us the required referrals at Ron's last appointment. We now have a "helper" from Home Instead two afternoons a week 1-5 PM. We also have a case study nurse locally for palliative care as needed-- a good resource when issues change or arise.
My good knee became my bad knee as the week progressed due to overdoing during the move and condo set up. By Tuesday evening, I could not bear weight on it so texted friend Jim in the middle of the night requesting his crutches Wednesday morning. He dropped them off early, so I could get around. Doc Wojo made arrangements for me to see an orthopedic doctor that morning. Ron and I are quite the pair! He used his walker, and I crutched into the doc office. After RICE rest, ice, compression, elevation, and a shot of cortisone in my knee, both knees are pretty much normal again. Neighbors and friends have helped us with various things, and when our refrigerator, washer, and dryer are delivered tomorrow, things will definitely be under control. I continued to shop for things we needed but went mostly to Meijer where I could drive a cart and continue to rest my knee. Today I am crutch and cane-free. New appreciation for Ron and others who have to use any device to help walk.
Having help a couple afternoons a week is liberating. Primarily she makes sure Ron stays safe and does light housework. On Wednesday after my doc appointment for my knee, I went to bed to ice and elevate, and she fixed me lunch in bed and cleaned while I napped! On Friday when she was here, I set up PT for BOTH of us at the local hospital, ran errands, and ran into Liz, the teacher who taught next door to me at Kenwood. It was wonderful to visit with her...in the McDonalds parking lot where we both had gone to pick up coffee! This weekend has gone by quickly as I have had time to sleep more (guess that is why I am still awake tonight) and do little things around the home. I am looking forward to spending some time pulling weeds in the landscaping that is beautifully done. I hope it is not too late to plant sunflower seeds from the big sunflower that Abby gave me to grow last year. It grew from 6 inches to way over six or seven feet high!
I am content here and looking forward to connecting with more friends during the weeks we live in BG. It is okay to visit us! --in fact, the WELCOME mat is out!
Love, Ron & Jan

"Our Pond" - View from Kitchen Nook

In the picture below of the entrance to Cogan's Crossing, our home-villa-condo is in the background.

Home Sweet Home BG - A Good Move

We spent our first night back in Bowling Green! The move went smoothly; Gary and Vicki arrived at the Villa before we did in case Directv came at noon, and they also brought a carload of belongings which they had put away. The movers started to unload about 12:30, and we arrived 15 minutes later. Perfect! Ron was soon resting in his recliner, and I watched Vicki work on the kitchen from my chair. Anne and George are bringing our wall pictures and a few other things on Thursday. By then I hope to have a washer, dryer, and refrigerator!
It is a peaceful setting here. There is a large pond with fountain outside our slider in the kitchen nook.

Crazy Busy

May has been true to form as an extremely busy time, even in retirement! We are looking forward to spending time in BG in our new condo, but it has been a challenge to make all arrangements and pack, etc. The plan is coming together. My sibs and spouses have helped with packing and are helping with the move at both houses.

Condo Pictures from Early May

June, oh, my!!

I have been on information overload this week. We have realized that we are at a transition point in Ron's care, so Cale met us in Ann Arbor on Wednesday and Friday to help with Ron's appointments with his transplant doctor, Dr. Mag, and a new Physical Medicine and Rehab doc, Dr. Smith. (Cale was surprised how young both of them look.) Ron will have another head MRI June 9, and then we may or may not have new information from his neurologist. Ron also has a pulmonary doc and an eye doc in Ann Arbor. As has been the case in the past, after a hospitalization for pneumonia, he loses some ground physically and cognitively. He doesn't seem to go back to where he was before the hospital stay. The difference this time though is that he is breathing much better and says he feels better than he has in weeks. The parainfluenza type 3 was hard on him. The non-Ron behaviors continue with new ones occurring.
During the last two weeks at the lake before heading to our condo, Ron will have at-home PT and check ups by a nurse. Dr. Smith wrote scripts for out patient PT and speech (to work on thought process) which we will start in BG if Ron wants to. He has started to show some displeasure with all of the many appointments and doctors.
May was very busy with looking at and buying a condo, selling Ron's truck, starting to pack things to move to the condo, 6 days in the hospital, appointments for Ron on 5 other days, yardwork begging me to get outside, arrangements for dock and pontoon and movers, etc. lots of mental exercise for me!! Thank heaven for email of documents and electronic signatures!
I have planted some flowers by the house as well as 5 tomato plants. We are mowing over my garden area behind the garage, except for the flowers that I have out there. I have known all winter and spring that a garden would not be possible and can accept that change.
Love to all of you,
Jan

Back home at Gilead Lake

Ron needed oxygen for a few hours Saturday afternoon, so we couldn't come home until Monday afternoon. After reviewing everything, the doc thought the IV antibiotics were the best treatment, so I am giving him cefapime IVs every 8 hours. I have done this several times before, and I use his central line.
A nurse has come to our home twice and a PT once. The PT thinks that I should write a book. We will be back in AA 3 days next week. Physical Medicine is going to evaluate him for more intensive rehab.
It is exhausting to be in the hospital 6 days. Then you are hyped up to be home and do too much the first day. I am catching up some with naps and into the routine of new care for Ron. He has improved some the last two days.
Niccole surprised us by arriving on Thursday for the long weekend. I have put her right to work!
I am working on making the arrangements for a moving company to transport some of our belongings to the condo in BG in mid June. The condo will give us more options for where we go from here. Lots of unknowns.
Love,
Jan

Getting answers, making progress

Ron's lab cultures have grown a viral and bacterial "issue". He had parainfluenza type 3 which contributed to the pneumonia developing. The sputum sample has pseudomonas which is an antibiotic resistant bacteria. To treat the respiratory flu, he had an infusion of antibodies-- the one from 1000 donors. Thank you blood donors!! There is not a specific antiviral med for this type of flu.
For the pseudomonas, they have put him back on IV cefapime which is an antibiotic that must be given in the hospital. The bacteria culture is now being tested to see which antibiotic in pill form will best treat it; that result should be back today, so now they are saying he can probably go home Sunday afternoon. His coughing and breathing are much improved. The rapid heart rate, croupy cough, pneumonia and low oxygen saturation were complications of the type 3 flu. He has not needed oxygen the last 2 days.
We will need to come back to AA for ECP light treatments next week. He can't have them when sick because they alter the immune system. The balancing act continues. I will feel okay about going home Sunday, especially since he will be checked next week. He does not complain of rib pain but does take an oxy at night to make sleeping easier. He has not had a fever at all during this illness. Very stoic as you might imagine. Me, too; I guess or maybe getting somewhat numb to all of this.

Quick Update from AA

On Tuesday afternoon we arrived in AA after the closing on our condo in Bowling Green, Ohio. Within a half an hour, a storm blew in with 65 mph winds. That night breathing difficulties which had been escalating worsened. Early in the morning Ron fell off the curb in a parking lot; two men helped me get him up to a picnic table. He refused to go to the hospital until his scheduled appointment at noon. He was admitted because of the fall and his need for oxygen.
Ron has been undergoing testing, and he has pneumonia again and broke four ribs in the fall, so he is taking IV antibiotics and has responded quickly to treatment. He really does not complain of pain from the rib fractures even though there is some displacement. He rarely mentions any discomfort except for skin itching.
So we will be at Mott Hospital where the bone marrow transplant clinics and in-patient hospital for BMT patients - adult and pediatric- are located. Ron will be a patient here for a few more days.

Change

We have been making some changes. Today we sold Ron's truck because for some time he has not been able to drive. He did some "country driving" last summer which was questionable due to his poor vision and reaction time. Also, I know that we will continue to need more assistance with Ron's care and will continue to make trips to Ann Arbor for treatments every other week. I have adjusted to just letting some things go. Ron gets frustrated with my over-mothering. Usually, I let him choose his clothes, decide when to shave, give less comments and direction concerning clutter around his chair, food on his clothes, etc.
On Tuesday we will be closing on a condo in Bowling Green. We will be able to make day trips to his appointments and stay at the condo. It will be wonderful to see Cale's family much more and lean on our Bowling Green friends. We are keeping our lake house in Michigan; we are closer to our siblings here and are in the area where we grew up. Time wise, we will probably be at the lake more days during the warmer months. We will stay in BG during AA weeks and in the winter.
I had my first physical therapy session today, and my recovery is going very well. I expect my knee to be "totally normal" by the end of May.
Put grape jelly out today because I had seen an oriole. Amazing! They love it and such a special sight to see! I finally put out my hummingbird feeder and am waiting patiently. We have numerous yellow finches coming to our feeders, too. Loving nature's surprises...the two deer I have seen frequently were behind our garage today. Very pleased that the pump and well I had drained and winterized on the garage side of the road is working again. I held my breath as I turned it on!

To Honor Ron...

a Relay for Life photo sent by Gregg and Darlene

Our plan came together!!

Don't you just love it when a plan comes together? I do have to admit though that I had more discomfort than I had expected the first 24 hours after the scope. I had thought that I would immediately be able to crutch around the house. Not so, but the pain meds covered the discomfort. So glad that we have had around the clock help for 3 days and a nurse visiting 5 days. The hospital "gave us" an ice water lower leg compression cuff that circulates cold water. It is electric, and the ice water tank has to be changed about every 4 hours. It alleviates pain and swelling. Everything is so much better today, and I am able to crutch around. I am totally taking advantage of all the great support we have had. Our siblings and spouses are the best!!!

Staying Busy!

Thought that I had better let you know that we are doing okay! I have my knee scope tomorrow and have been busy making all arrangements for both of us! Our siblings are going to take care of us. We have also been to Ann Arbor for light treatments and Dr. Mag appointment. Things are stable, and Ron had an immunity infusion, too. During this busy time, we have been looking at condos back in BG. More on that later.

Great to see Ron outside!

It has been 70 degrees the last two days! Ron wanted to go outside today and walked around the fenced-in garden area. He held onto the fence, used his cane, and stopped to rest 3 times, but he did it. I hope this is the beginning of a new trend. He also watched me clean out the asparagus bed.
It was a loooong winter. He had his 75th extracorporeal photopheresis light treatment last week; the treatments help to counteract his over zealous bone marrow which attacks his own body. Chronic graft versus host disease is like an autoimmune condition.