Moving ahead

Monday will be the 4 year anniversary of Ron's bone marrow transplant; it is also the day of Ron's oral surgery at University Hospital. He has to be at the hospital at 5:45 AM and surgery is at 7:30. It feels surreal at this point even though we've been through the preliminary appointments. Ron has been through so much but continues to be a fighter. I am sure that next week will have some new challenges for both of us.
I saw Ron's AML leukemia oncologist today. He called out to me, and we visited shortly. He was Ron's doctor for 16 months through 8 hospitalizations for aggressive chemotherapy. After bringing him to his second remission, Dr. Mag has been Ron's doctor beginning with his transplant 4 years ago.

Are you ready for some football?

Where has the summer gone? I think we always ask ourselves that about this time. I remember always being excited for the new school year to start..when I was a student and also when a teacher. Football is another sure sign that summer is coming to a close. Ron and I both enjoy the fall months that will soon be here. We are hoping to make our annual trip to northern Michigan to see fall colors and hopefully, a trip to Virginia at Thanksgiving time.
We have decided to take the plunge and have scheduled Ron for oral surgery August 24. What is left of his teeth needs to be extracted. His surgery will take place at University Hospital- U of M. This is going to be our first insurance battle. I can hardly stand to think about it! I know we have been so fortunate to not have had this be a worry earlier.
Ron continues to adjust to xarelto for his blood thinner. The first dose (which he took 2 weeks) was too much for him which led to bleeding, so now he is on a lower dose every other day. He continues to have ECP treatments to counteract his body's rejection to the blood products made by his new bone marrow. He had his 118th treatment this week. Insurance does cover his treatments.
Ron's transplant was 4 years ago this month. He has been through so many complications and hospitalizations since then. We could never have imagined how much our lives would change. There is no way to predict what lies ahead.

Fun at Gilead Lake

Happy July!

Now that picture was a LONG time ago! We were not engaged, both in college. Guess I won't post an after picture. Things have returned to normal (his new normal)for Ron since his June hospital visit. We accept "same" as good news. Other good news is that he has changed to a pill for his blood thinner. Xarelto. After 8 months of giving him belly shots, that change is a relief. About once a week the injection would hit a small blood vessel and cause a big bruise. Just bad luck when that happened.
It is very green and mostly cool to warm at the lake. We have enjoyed seeing wild turkeys with their chicks almost daily. There is an occasional doe and fawn, and we have also seen a sand hill crane with chicks in our yard. I still enjoy working in the yard, and I am a whirlwind of trimming now.
Hope everyone had a great holiday. We had outings with our sibs over the 4th weekend, and then our kids and grandkids came in the next week. (Andy, Lisa, Abby, and Lily were here in June before returning to Germany.) Now we're on our own again. I will post some pictures later...on the IPad now. Our calendar is much less cluttered now. I so enjoyed having all of the grandchildren here at the lake this summer.
Ron is enjoying watching the British Open at the Old Course. It brings back memories of his two trips to Scotland with golfing/Army buddies and of course, the 5 times that he played the Old Course.
Love to all. Hope you still have many summer plans ahead of you!
Love, Ron & Jan

Hard to not worry...

A nurse once asked me if I waited for the next shoe to drop, in regard to numerous complications that Ron has experienced. It is a delicate balance to not worry too much while keeping my guard up just in case. Ron's kidney function has returned to normal levels as indicated by today's bloodwork. That had been a worry for me. A physical therapist works with Ron in our home. A nurse has been following up with phone calls to check on his recovery from the lung infection, so he is moving in the right direction.
I won't give you all the details, but my Ford Edge is at the dealership to replace the touch panel of "my Ford Touch". My hazard lights came on at random times and could sometimes be shut off by touching the dash in random places. Apparently, they turned themselves on in the garage and caused a dead battery. My car was jump-started this morning, so we could drive to Coldwater, and then the dealership took Ron and me to the lab at the hospital and later picked us up with a loaner car. Our pontoon boat also had a dead battery; it started this afternoon after brother-in-law George had hooked up the charger for me earlier today.
I just mainly wanted to blog to let you know that Ron's recovery is going well! The other distractions keep things interesting.

Meanwhile back at the lake...

We will spend most days at the lake the next 4 weeks. During this time our other 3 kids' families will spend some time here. Andy, Lisa, Abby, and Lily have returned to Germany and are taking trips during Andy's leave. They will be stationed in Germany another year.
Today I worked for awhile out in the yard; it made me feel sad to remember how my garden and flowerbeds were the first 2 summers that we lived here. (Summer 2008-April 2010) Since then I have modified my expectations to allow me the time and energy to care for Ron. That's just how it is.
We have lost ground this month; our 3 week intervals between appointments only lasted 2 months before the setback with Ron's hospitalization. After 3 busy medical weeks, finally we will have an Ann Arbor-free week next week. Ron will have bloodwork done at our home-hospital Monday. He had abnormal numbers in the tests regarding kidney function, so now that he is eating and drinking better, hoping they have normalized.
I am anticipating 2 days to hang out at home this weekend. It looks like I will be putzing around inside since we have a cold rain! I am okay with that...probably a good thing that I have always been a homebody at heart!

Oh, my...

Okay. I'll say it; I am weary! Both of us are looking forward to the next 3 days at home in BG. In the last 12 days, 7 have been in AA. Ron has been seen by a physical therapist,Dr. Mag and Tim PA in the BMT Clinic, and his eye doctor, Dr. Mian, at U of M. Finally, we have made the decision to have serum eyedrops made; that is how we spent today. They cost about $200 for 45 day supply, but it will be so worth it if Ron finds some relief from his burning and itching dry eyes. The GVHD has caused the dryness in his mouth and eyes. He has lost his teeth and the vision in one eye since his transplant. His vision in his good eye has declined this year, but Dr. Mian thinks it will improve some with the eyedrops.
About the eyedrops: 18 vials of blood were drawn after an eye exam at the Kellogg Eye Center. At Kellogg,they are spun in a centrifuge, packed in ice, and then we took them to a specialty pharmacy lab in Ann Arbor. Then we had 3 hours to kill until the eyedrops were made. They had me look through a window where the pharmacist was dressed in a hazmat-like suit and worked with arms extended into a sterile box. The tech talked to him with a walkie talkie. Now we have 14 little bottles of serum eyedrops that are frozen, and the bottle that we are using is kept in the frig and good for 3 days. Ron already thinks they have soothed his eyes.
About the Physical Therapist: Ron will have physical therapy twice a week at home. He is weak, and the PT thinks that he will need about a month to bounce back to where he was. He suggested buying another walker, so Ron has one on both levels of our house. Ron is quite fragile, and a fall would be bad, of course. That purchase was made during our down time waiting for the eyedrops.
About the Dr. Mag appointment: Ron is dehydrated, and the IV antibiotics I give him twice a day are hard on kidneys, so I am nagging him about drinking. I have reminded him that if he falls and breaks something that I will not be able to take care of him. Over all, he is very careful, but he needs to drink, drink, drink. The belly shots of Lovenox are in the last month--the 8th month. In July he will change to zarelto, a pill. I don't know which one of us is more relieved. His lungs are still junky in the lower lobes, and it is probable that he will periodically have a lung infection or pneumonia. He takes 3 antibiotics, an antiviral, an antifungal, and uses 3 different inhalers to keep his lungs working pretty well. He has not had to have oxygen at home yet. Ron rides in a wheelchair at all of his appointments. I just pile my stuff on his lap!
About us: we are doing okay. It is great seeing the grandchildren in the summer. We are very proud of their good citizenship, and academic and athletic accomplishments, and we enjoy a myriad of personalities. I wish that we could be a larger presence in their lives, but our situation with Ron's medical needs and how they are scattered limits us.
Our villa in BG has worked out very well for us. We love both of our homes, and feel very fortunate to be able to have both. With Ron's medical requirements and two homes, I have quite a bit to manage. Ron can no longer help with any of this. For the time being, we are keeping our Gilead Lake home.
Love to all of you and special wishes to all of the Dads reading this! We will celebrate at Cale's on Sunday.
Love, Jan

Andy, Lisa, Abby, & Lily

A Bump in the Road...

It was hard for me to write an update last week. Ron was in the hospital for 5 days but is recovering at home now. We had gone to U of M for a treatment on Monday morning, and his oxygen level was running low. He was stumbling as we went up to the clinic to check in. They sent him to the ER, and he had a hospital-like room there; regardless, 9 hours in the ER is a long time. He was on oxygen for 3 days as they treated him for a lung infection and two common cold viruses. He had an immunity infusion, so over 1,000 donors are helping him fight off these complications. He will need this infusion monthly for 6 months to boost his immune system. From a sputum culture and sensitivity tests, IV antibiotics were matched for treatment. He was able to come home since this is a "nurse duty" that I am able to do. (9 days at home) A physical therapist will evaluate him tomorrow. He did have a fall in the hospital which only bruised his knees slightly.
So this is a bit of a setback, and now we have appointments in AA 4 days of the next 9 days. Thank heaven for the villa in Bowling Green.
I will post some pictures tomorrow. Andy's family is home from Germany during this crazy time, but we have had a good visit. Abby 8 years and Lily almost 17 months have entertained and delighted us.
I need to sign off for tonight. Love to all,
Jan

A Brand New Month

Things have markedly changed here at the lake with the warmer temperatures and everything in full bloom. A young Amish couple helped me put in the docks last week, and it always looks like summer when the pontoon is tied to the dock. Ron and I went out once on the lake. It is quite an effort with 33 steps down to the water. Even the 3 steps inside the house require a lot of effort. Now that the dock is in at Matt's cottage, I can park the pontoon over there and drive down to the water when we go on a ride. Much easier for Ron. we are looking forward to spending time with our kids'families over the summer. Their schedules tend to get more complicated as the grandchildren have more commitments to their activities. Andrew, Lisa, Abby, and Lily are traveling from Germany for several days; they have one more year overseas. (Thank heaven his 9 month deployment to Iraq is over.)
As I think back to last summer, Ron's decline has definitely slowed, with treatments once a month compared to every other week last summer. My nurse duties remain the same with meds and caring for his central line. (Neostar)
He will have belly Lovenox shots for about two more weeks for the extensive DVT which was found last November.
The oral surgery issue is still not resolved--insurance should bear responsibility for it because it is a medical complication, but there are a few hoops to jump through to schedule it.
Since last summer, Ron's diet has been affected because of his teeth breaking at the gum line. He has less stamina, but he is very careful to avoid a fall. His weight stays constant, about 30 pounds less than before the transplant. He reads less--no books or magazines any more but does read the sports schedule in the newspaper to schedule his TV sporting events.
Thanks for continuing to think of us and sending prayers and positive thoughts our way.
Love, Ron & Jan

You gotta love Spring!

The "moonrise" over Gilead Lake has been spectacular! You can't really capture it in a picture; as the moon gets higher, it shimmers across the lake. (an attempted picture in the previous post

) Most of the flowering bushes and trees are in full bloom. The flowering picture is just around the curve on Gilead Shores Drive.
Next week we go to U of M for two days for Ron's treatments. Treatments are a month apart now; his bone marrow/stem cell transplant was nearly 4 years ago.

Oh, happy May!!

It is delightful to see the arrival of spring! We plan to spend about 20 days each month at the lake During the warm months and 10 in BG. I have yard-worked myself until muscle sore, but it is such a good feeling. It is HUGE to only have AA appointments one week of each month rather than every other week with only 10-12 days in between those overnight stays. Now we travel from BG to AA daily. It is much easier not to have to pack clothes and all medical supplies.
Ron continues to be about the same. We have short term issues to work through occasionally, but no biggies. It has almost been a year since his last hospitalization when he fell, broke ribs, had parainfluenza 3, and pneumonia. Cognitively, he stays about the same; his issues would not appear to be progressive.
As I type, I am sitting in my favorite place by the lakeside windows. The redbud is blooming, numerous yellow and house finches are eating, an oriole is trying out my suet and hummingbird feeder. The grape jelly is out for the oriole but couldn't yet locate the feeder for it, so I put some in a low bowl. We have two pair of wrens making home in the birdhouses. I love hearing the wrens and Orioles sing.
Things are good with "our kids". Andy is home to Germany from Iraq, so that is a significant mental burden lifted. I have enclosed some recent pictures.

Status Quo

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

New Month (First picture: Summer 2010)

Pontoon Picture: Summer 2010

Decisions, decisions

Over the past few months, we have been trying to make a decision about Ron's teeth. We have seen his regular dentist, an oral surgeon in BG, and this week an oral surgeon at U of M Hospital. And we still haven't made a decision. The next step is for Ron to see a pre-op physician and an anestheologist to see if he can tolerate oral surgery to remove what is left of his teeth. There is nothing that can be saved, but he does have some chewing power left, so it is hard to decide if he should have a surgery that might be troublesome for him when he might not be able to wear dentures anyway. There is the possibility of an infection due to all of the decay. He takes 3 antibiotics, so no infection has developed so far. How do we make this decision??!!??? We continue to gather information and try to weigh the advantages and disadvantages. I can't imagine what the recovery time and consequences will be for him. Feels like a scary decision to make.
Some pictures from the past week:

We had dinner with Cale's family at BW3 after driving out to Grand Rapids, OH, to see the spectacular 2 story high ice piles made by Mother Nature when the ice went out on the Maumee River. A lot of damage was done this year when huge ice chunks mowed down flooded areas. The markers were broken off in a cemetery, for example.
We spent Monday and Tuesday in Ann Arbor for Ron's 2 treatments and the appointment with the oral surgeon. His ECP treatments alter T cells in his blood, so they lessen the attack his body. He has now had 109 treatments. After 3 months of going every week (2 days each ECP week), 18 months of going every other week, 3 months of going every third week, in April we will begin "only" monthly treatments. It has been a long haul; very excited about tapering treatments to monthly!

Going with the flow...

I think it would be fascinating to study the human brain. Ron's behaviors are so diverse. A day or two ago, he was telling me the names of the players in the line-up for the 1959 White Sox in the World Series. Then yesterday when I came out to the great room, he was wearing my pull-on black knit pants and my glasses. Today he wanted to make coffee for me but didn't put the pot on the coffee maker, and by the time I saw it, it had run over the countertop, down the front, and under the stove. Ron has the appearance of a chronically ill person and has aged by literally decades since his transplant. The chemotherapy didn't have that effect. In the past before the bone marrow transplant, there had been more than one time when someone thought I was his mother, and now there have been times when people think he is my father.
One of my favorite stories: soon after we moved to the lake in 2008, a neighbor told me to thank my son for mowing by the edge of the road across from her house when he was mowing our yard. I told her thanks;I would, but he was my husband not my son. She said, Oh!! He's your husband's son. Ron had always looked young for his age and was so healthy and fit.
We have had a pretty good winter- no hospitalizations or acute illness. We seem to be able to control his chronic issues.
We had been looking at a smaller house here at the lake and had a second appointment scheduled to look at it with my sister and brother in law. Then our realtor called and said that it had sold, so we have decided to make some improvements in our current lake house and keep it at least another year. We might not attempt to stay here when we have extreme cold and deep snow next winter. I am disappointed but can say, "oh, well, it wasn't meant to be." Moving would have been a huge undertaking. The good part is that I made a major effort to get our home more organized, less cluttered, and had it nearly presentable to put on the market.
Happy Spring. The warmer temperatures have been nothing short of amazing and uplifting.
Love, Jan

In like a lion...

Sometimes it feels like I have a lot to mentally digest. I have just finished reading Still Alice, and it brought to mind many milestones that we have had to journey through. I couldn't help but compare and contrast Ron's brain changes to Alice, the main character who was diagnosed with early onset Alzheimer's disease. Ron's cognitive disorder is not Alzheimer's or another dementia. That is one thing that was agreed on by his neurologist, the neuro-psyc doc, and Ron's speech therapist.
Alice seemed so real that I thought this book was a memoir written by her family, not fiction. I could relate to her denial, compensation, and explanations that she hung onto before finally accepting that something was wrong. I remember the moment when I faced that scary unknown head-on and physically experienced a dark, and what felt like an evil, presence. I knew something was horribly wrong with Ron's thinking. He had had cognitive and personality changes for six months following a hospitalization in the ICU for several issues; this was two years ago. This book made me rehash those experiences. Rehashing is good for me; it brings understanding and makes me thankful that Ron's long term memory is quite intact, and his short term memory isn't terrible. His brain changes affect his mobility and problem solving skills mostly. So what does that mean? He doesn't have good balance so must use his walker, a four prong cane, and when we're in a store he pushes a shopping cart for balance. He has repetitive behaviors like buying the same items repeatedly, adding a blanket to his chair repeatedly. Yesterday when I cleaned around his chair, he had 9 blankets, 50+ pens and markers in various containers, index cards in various sizes, notebooks, 3 pairs of gloves, three stocking hats, caps; and it had only been a couple days. Ron is Usually very laid back, calm and accepting of "how he is", so I am grateful for this, and we have mostly enjoyable days.
I have been writing this entry for a week and didn't want it to sound melodramatic. I am glad to see the arrival of March! I feel like spring will be especially uplifting this year. Ron and I are trying to decide what to do about our lake house. It really is too much for us, but we would still like a place on the lake. We are looking at a house a second time this week. It has many good features but drawbacks too. The timing of all of this is mind boggling! I keep telling myself that it will play out like it's meant to, and there's no harm in taking things slowly.

A Date with the Oral Surgeon

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

It is winter!

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

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

Super Snow, Super Bowl 2-1-15

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