#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