Changing Things Up...

But not in a good way. Ron had his light treatments this week, and on the day of the first treatment, I stepped into his cubicle to hand him the bag he carries. He was already wrapped in his warm blankets as he sat in the chair. I thought I was stepping on the edge of the blanket, but I stepped on his foot, and instead of twisting my ankle, I twisted my bum knee. The nurses helped me to the adjacent chair and brought an ice pack. After an hour, I could still not bear any weight on it and had to go to the ER. Unbelievable!
The nurses pushed me to the parking garage, we got our car, and drove around to the ER, so I would have the car when discharged. They brought Ron to the ER in a wheelchair when his treatment was over. I probably have a miniscus tear since this has been an ongoing discomfort, and Wednesday's twist aggravated it. I have an MRI Tuesday in Coldwater. They were going to put an immobilizer on my leg, but it told them I had to be able to drive, so it was wrapped, and I have my first ever crutches. Cale came to the rescue early the next morning to take his dad to the second treatment while I elevated and iced my knee as I made my appointments back home for the MRI and orthopedic doc.
The knee is MUCH better, and I am being very careful...such a helpless feeling to not be able to walk. I will probably require some type of procedure. I am learning to ask for help. I really wanted to do it all. Anne and George were at the house to help us unpack and brought dinner and lunch for last night and today. Tammy is sending food and some groceries with Rick when he comes tomorrow. We will have everything we need as we await another winter storm. It was -8 degrees this morning. I am using one crutch now and can bear weight on my left leg but can tell my knee is not right.
Ron saw the PA Wednesday. His skin changes are not a new flare, and the blood test that can indicate a flare occurring was 0.0. That was such good news. The last thing the PA said was, Jan, you need to go to a doctor for your knee. Then I twisted it about 15 minutes later. Ron is stable at this point. It is good news when we have no new issues.
When the valet rolled both of us out to the car when we left the ER, he said You're together?? I said yes, just put me in the driver's seat, please. At a rest stop on the way home the next day a woman held the door for us, and she also asked, are you two together?? People are so kind to us..strangers as well as family and friends. We will soon have been on this journey four years. Ron first started to have some sickness in March 2010.
Hope this winter winds down in March; it is going to come in like a lion. Even the 20s with no wind feels warm! That is just wrong.

Take 2

I am trying this again. I wanted to reflect on who Ron is now and struggled through my words last evening---then the page was stuck in the saving mode, and most of my entry was lost. Depressing.
Ron seems to be at a plateau in his recovery. I don't mean to sound like I've lost hope, but I don't feel like he is going to be able to recover further on a physical or mental level. GVHD is wicked, and again he is walking the tightrope between medications and his immune system attacking his body. To keep the immune system so repressed that it doesn't attack yourself there is no immunity for other invaders. So that is covered by numerous types of antibiotics, anti viral, and antifungal medication. Ron's steroids (prednisone) was tapered two weeks ago from 20 to 15 mg daily. He also has an infusion of steroids during each of our visits to AA for Photopheresis light therapy treatments.
Ron walks with a cane, exerts a lot of energy to get up steps, and is very fatigued after any physical activity. He sleeps 10-15 hours a day and is most bothered by the itching and skin changes on his back. He takes atarax and oxycodone to control the discomfort, and we apply sarna lotion several times a day. He cannot take Tylenol because it affects his liver.
Since the last taper, I had noticed some skin changes which the ECP nurse also noticed, so she felt the PA should see him. Now he is also using a steroid cream on a new area of outbreak, but nothing else was changed, and hopefully with the accumulative effect of the treatments and steroid infusion, it will be controlled. If not, his prednisone will be increased in two weeks. The tightrope.
Ron's persona is very different than before the transplant. He truly doesn't seem to comprehend the changes, or the oddities in his behavior. In many ways he is still Ron; he is still my valentine.

At a Plateau...

Ron seems to have come back as far as he is going to from his pneumonia in November. He no longer has a nurse who visits us at home, and he is also discharged from home PT. He doesn't want to go to out patient PT. We continue to go to U of M every other week to have treatments to control the GVHD ...... At this point I continued to bare my heart about my valentine, only to have a glitch in saving fail to save it! :-(
Don't think I can type those thoughts again.

Abby Holding Lily (1 month old)

Snow and Deer

You can see the hoe next to the crabapple tree. I hook it on branches and shake down apples for the deer to eat. The picture from the front door during the storm was taken this morning. Our plowing service has cleared the walk and driveways.

Decided NOT to talk about the weather...but oh, my. It brings out a need to make soup.
We traveled to Ann Arbor for 4 days last week. Ron had a pulmonary function test on Monday, and we met with his pulmonary doctor. His lung issues are stable, and the pneumonia has resolved, but he has permanent lung damage which does make him susceptible to more lung infections. She changed him to Spiriva which you have probably heard advertised on TV. That replaces one of the inhalers, and he continues to take Advair and an antibiotic specifically for his lungs.
On Tuesday we had planned a day trip since no appointments, but it was so cold that we stayed in AA. The University of Michigan and Eastern cancelled classes...first time since 1978. On Wednesday and Thursday Ron had two ECP treatments. Because his bloodwork and previous CT scan of his lungs were improved, his steroid prednisone was tapered from 20 to 15 mg daily. So that is a step in the right direction. His physical therapist is coming to our house tomorrow and will probably discharge him from services at home. It is hard for him to muster the energy to do his exercises. That is so unlike the old Ron who ran 1000 miles a year, was an avid golfer, and sports official. Chronic graft versus host disease has ravaged his body in a variety of ways. I am thankful that this doesn't seem to bother him.
The deer have been regularly coming into our yard to eat apples and the pine trees. I will post a couple pictures. I keep a hoe by the crabapple tree, so I can shake the branches. We watched deer in the yard for over half an hour yesterday at the end of the afternoon. Two came across the road and were less than 20 feet from our windows.
Ron & Jan

These are "Before Pictures".

Snowplowing has left many areas of high snow next to the road. Yesterday the roadways were quite clear; the picture was taken on my drive into Orland for a newspaper, bottled water, and a few groceries. The snow that has been plowed off the driveway that leads to our garage keeps getting higher!! It is snowing hard this morning. January was a winter month to remember, and February is off with a bang.

January continues...

Nature has been full of surprises! Where did this winter come from? We have snow or frigid cold or wind everyday and on some days, all three!! We have experienced being snowed in and our Cooper's hawk fly into the great room windows twice. We feed the birds, and he can't resist hunting on our deck. He even perches on our chairs under the covered deck.. I really thought the window was going to break. The winter scenery has been breathtaking and aggravating at times.
The memorial service for Ron's mother was on the 18th. We honored her life and memory and enjoyed spending time with family and friends. Now everyone is back in their routines except when the weather interferes with school.

I have reached a point where I know that I need some help with Ron's care. This milestone was passed when he ventured out behind the garage in 10 degree weather. He had put on boots, gloves, hat, and hoodie and wanted to move some wood from our woodpile to the back of the truck. He fell in snow that was about 10 inches deep and had to crawl to the garage. He cannot get up by himself when he falls. I came home from having my teeth cleaned and found him on his knees in the garage. It hadn't been long but he was cold and visibly shaken.
When I left home, he was in bed for a nap. I continue to be totally baffled to what his thought process was, how he was able to physically get as far as he did, and why he didn't nap at all on that day when he sleeps 2-6 hours each day, and my appointment was at 4:00. I knew that I would not be able to leave him alone any more, so I am having family-help to stay with Ron when I have an outing. I am starting with twice a week on weeks we are not in AA for appointments. That feels like a comfortable starting point, and I am ready to accept help on a regular basis. It will seem odd because we have been together 24-7 for a long time now except for a few exceptions.
Love to all,
Ron & Jan

Little Sister, Big Sister

Lily and Abby

Catching my breath...

We have had a full and emotional week. Ron has been sleeping 13 of the last 15 hours (and still sleeping), so I know it took a toll on him too. We traveled to Ann Arbor for 3 days last week. Ron had two of his extracorporeal Photopheresis light treatments and an infusion of antibodies. He also saw Dr. Mag who ordered a CT scan of his lungs because they sound junky. (My word to describe the lung sounds) we could only get a "sit and wait" appointment which sounded ominous to me, but we only had to wait an hour. I wheelchaired Ron over to University Hospital from Mott where his appointments are. All of the clinics and the hospitals are connected. When we arrive for appointments, I drop Ron off after we load our belongings onto a wheelchair for him to push. It is more stable than walking with a cane. Then we have a wheelchair if he needs to sit, and it works well with winter coats to haul as well as my notebook, calendar, IPad, and our bags.
Ron's lungs are not great but fortunately, not bad enough for admission to the hospital last week. His pneumonia has been antibiotic resistant infections which require IV antibiotic treatment..in the hospital. I was additionally concerned because Ron's mother's memorial service was planned for last Saturday. But, events unrolled as planned, and the weather even cooperated for Cale's family to drive from Bowling Green, Niccole and Cole to drive from Virginia, and Matt to fly in from Tampa. Ron's brother Rick had made all arrangements concerning Esther's death and memorial service, and everything played out well. The service and the social gathering of friends and relatives afterwards truly did bring some closure...that word is over-used but says it well. I think both of us felt a sense of relief that her life was honored in that way and that the memorial was just over. Ron was exhausted by last night, had a rather shaky day yesterday, and hopefully many hours of sleep can help him recuperate. We are home this week but will return to AA next week, and he will have pulmonary testing and see his pulmonary doctor and have his next treatments.
A really special moment for me was seeing the kids and grandkids sitting around a table and visiting and catching up---and maybe talking about us a little too-- at the social gathering.
Love to all,
Ron & Jan

Impressive Snowfall

A lot of our snow has now melted! It was a little scary being snowed in for two days, and thank heaven that we didn't have an emergency. It is amazing how much you can find to do just around the house! I continue to work on correspondence and sorting and organizing things.
We both enjoy watching play off football and college basketball, so we keep entertained. Andy has sent us many pictures of our new granddaughter born in Germany. He even sent a video clip of her starting to cry because I had told him that I love newborns, even that newborn cry. Of course, we think she is adorable! What a happy way for us to start 2014!!

Watching the snow fall, fall, fall...

This is a good time to finish my Christmas cards which have now morphed into New Years cards! We are a few hours into the next snowstorm which will last about 24 more hours. I have finished the laundry and am remembering how when we first retired, I would laugh because it had been over 30 years since that had happened. The real miracle was that I washed and dried Ron's hearing aids, and they still work. Yes, I always check his pockets--especially for Kleenex but those hearing aids are tiny, and I missed them. Could have been a several thousand dollar mistake!

Time to update you on Ron's progress. We traveled to Ann Arbor for the last two days of 2013. Ron had two extracorporeal Photopheresis treatments. ECP. He will continue to have a pair of treatments every other week. We are so glad that Medicare took over the cost from Tricare when Ron turned 65. The treatments help to take the edge off the aggressiveness of his T cells which continue to attack his skin and have made his lungs have chronic issues. His bloodwork December 30 was stable except it showed that his immunity is very low now. Ron did not want to travel to AA in the upcoming week, so his infusion IVIG to boost immunity is the following week. We will spend 3 days in AA.

I am trying to let Ron eat more things of his own choosing...which means a lot of gummy bears, candy bars, Tom's donuts and rolls, cookies, sweet drinks, etc. amazingly his weight stays close to 180. I look the other way and load up the insulin injections. This decision is based on the nurses' input to my concerns about his diet. If this food adds to his quality of life, so be it. And I feel more balanced on this tightrope of monitoring things.

So looking ahead, I will be glad when he has had his IVIG infusion. He usually feels better because his body is infused with antibodies from over a 1000, yes 1000, blood donors. If you are a blood donor, you are an amazing person. Thank you!! Ron has had numerous white blood cell, red blood cell, and antibody infusions since he was first diagnosed with leukemia AML in April 2010. The infused antibodies help control infection. Ron also takes 3 antibiotics and antiviral and antifungal meds. His body needs a lot of medical support to fight infections.

The snowfall really is beautiful, and when I got up at 6:00 this morning, there were 3 deer under the apple trees right outside our windows. While Ron and I looked out the bathroom window, Blue jumped up on the bathroom chair, put his paws on the windowsill, and he watched too. A surprise from nature that catches your breath.

Love, Ron & Jan

Welcome Lily Grace Hover, our New Years Day Granddaughter

Little Sister, Lily, arrived on New Years Day in Germany at 10:00 P.M. She weighed 7 pounds 9 ounces and is 20 inches long. Big Sister, Abby, approves!

One Card Done!!

I have organized my New Year cards; now I just need to get hopping! I addressed one, then realized that I couldn't mail them tomorrow, so that was enough of an excuse to stop. I am feeling like my brain has cleared at least partially! The last six weeks were stressful, and I didn't do anything that I didn't want to...if that makes sense.
I have started to read a book, so that is a good measure of feeling better. Ron is gaining strength, so it is not such a worry about him falling. He still has quirky behavior that is child-like at times. Yesterday he wanted to get a fish in a round bowl, so now we have fish and also walkie talkies. He also bought a clock radio that has so many functions that we can't even get the time set!! Cale, I need you!!!
I am putting away some of the holiday decorations and other things setting out that we don't actually use. I felt like that would help settle my mind, and it has. As much as the holiday events are enjoyable, collectively it can be overwhelming even in its modified form. Now I can better handle all that I need to be responsible for as a caregiver. At the same time, I wouldn't change anything that we were able to do for Thanksgiving and Christmas.
Ron might seem very much the same when carrying on a conversation with him. His long term memory is good, but he continues to lose many things daily and has some confusion. He has always given me cards for all holidays and special days like the first and last days of school. For our anniversary this year the card was "for the both of you", and my Halloween card was for "baby's first Halloween". Although he did order gifts for me by phone, he did not have Christmas or birthday cards for me. This is an example of change in thought process. There are so many little changes in behaviors that others would not notice. He does not usually seem to be aware of this but has asked why he can't do most things that involve numbers. He gets frustrated with clumsiness and forgetfulness at times. Today when we went to town for our newspaper, he turned to me and said that they only had yesterday's newspapers. He was positive that it was Sunday. As you can see, these changes are mostly harmless although I am really tired of looking for hearing aids!
Physically, Ron's lungs continue to be congested, but his meds to treat bacteria, virus, and fungal infection control symptoms except coughing. This is a long-term treatment. His immunity is so compromised by the steroids that he must take to control his chronic graft versus host disease. GVHD. Hopefully, the resumption of phtopheresis treatments every other week will permit the steroids to be tapered.
So this is probably my last 2013 entry in Ron's blog. Again I am hopeful that next year will be better in regard to Ron's health. That is a real possibility.
Love,
Ron & Jan

A New Season

We are having an early start to winter. Our driveways have been plowed twice already! When we came home from Ann Arbor on Wednesday, I was so happy to see a clear driveway. Ron had two ECP light treatments, and we saw his eye doctor to wrap up our day on Wednesday. The chronic graft versus host disease affects his eyes; they itch and burn at times, so he frequently uses eye drops. Because his tear ducts do not produce tears to keep them moisturized, the doc put plugs in the tear ducts to keep his eye drops on the eye surface for a longer period of time. He has felt some relief from those symptoms.
Christmas activities have been underway. We had a gathering in our home last Saturday…the day of the winter storm, so not everyone could come. There really was no decision to be made as the storm was widespread, windy, and everyone had about 10 inches of snow. Cale, Jess, Joey, Jack, and Allison came last night, so we could have our Christmas a week later. I have mailed my packages, and our Christmas cards are ordered; that will be a project the week after Christmas! We hope to spend Christmas Eve and Christmas morning in BG. I have felt very busy the past month, starting with Ron's hospitalization in November. It was a shock when December arrived, and I knew that I had so much that I wanted to do for the holidays! We have enjoyed Christmas greetings from family and friends. It will be nice to sit down with our cards and read those messages again.
It was drizzly rain and fog late this afternoon which was actually perfect weather for a nap and winding down. Apparently that appealed to Ron, too, because he has been taking a long nap.

Back to Grinding...

At least that is what it feels like today. I don't know what a realistic goal of recovery is at this point. Ron told me today that he would just like to be able to drive some time in 2014. The physical therapist visited on Monday, and Ron is not discharged yet from home PT. I am glad that he qualified for more in home sessions.
So we are moving ahead again and being very careful getting around in what has already been a snowy winter. And it's only mid-December! I have several new year resolutions in mind. The first one will be to do our Christmas cards! Ron has always been the Hover "card man", and that is hard for him to pull together now. He kept the calendar, bought the cards, addressed and stamped them, added a note and put them on the kitchen table for me to add a note and mail. I have a new appreciation of what that entailed! Hoping that I can pull it together, so our roles for this can be reversed as many other aspects of our lives have reversed roles.
We have resumed traveling to Ann Arbor every other week for Photopheresis treatments. ECP. We are now "diamond" Hilton members due to so many overnight trips! Hope you are enjoying the holidays!!
Love, Ron & Jan

Abby Hover- Soccer Player

Tis the Season...

We have been busy since returning home from our trip to Virginia for Thanksgiving. I could have used a few more days between Thanksgiving and December! So I continue to learn how to modify, and have had a reminder of how less can be more. Actually, I probably have enough outside lights, tree ornaments, and other decorations for 3 homes...so no reason to use everything!
We have made one routine trip back to AA for appointments, and we will do the same next week. We are returning every other week again for "a long time". I didn't ask what that meant in a number. Ron is recovering well from November's pneumonia and hospitalization. He has physical therapy in our home, and a visiting nurse comes each week to check progress. That will probably end before Christmas because he is doing well.
In addition to less decorating, I am postponing my Christmas cards until after Christmas this year. I have been thinking about which pictures I want to use on our yearly card.
I continue to enjoy hearing about adventures of family and friends. That never makes me sad for us, but oddly, when I see couples who are complete strangers but remind me of who we used to be, I feel sad. I do not dwell on those feelings.
We had an update on Lily today. Lisa is almost 35 weeks pregnant. Everything looked great on today's ultrasound, and Lily has long arms and legs like Abby and Andy--Lisa's words. They could even see that she has hair, and of course, all of us wonder if it will be curly like big sister Abby. Everything looks great, and she weighs about 5 pounds and 11 ounces. After I post this, I am going to add a picture of Abby. I have a soccer one in mind.
I love thinking about a new baby in the family! Hope you are enjoying your holiday preparations and activities.
Love,
Ron & Jan

The Boys and the Girls on Thanksgiving 2013

Back Home in Michigan

We had a good trip to Fredericksburg, Virginia for our Thanksgiving celebration. We rented a van, and my brother Gary and sister-in-law traveled with us. Gary did all of the driving which was a huge treat for me. We took two days each way so to not overdo the travel days. Because we left on Monday and started home on Friday, we missed the winter storm. Vicki, Niccole, and I prepared "the feast", so it was not too much work for any of us. Can you beat Thanksgiving food? I don't think so, and the Detroit Lions game was part of the tradition too!
The 3 nights at Niccole's and Cole's were relaxing for Ron and me. Nic, Gary, and Vicki participated in the annual Turkey Trot, and Nic and Vicki did some shopping Thanksgiving night.
Today I am trying to organize my thinking for December birthdays and of course, Christmas. We do travel to Ann Arbor again this week. Ron is recovering from the last bout of pneumonia.
We were home in time yesterday to watch most of "The Game". The Buckeyes were lucky to win that one! George had set our DVR, so we were able to see the fight that we had heard on the radio. Griffiths also took care of the newspapers, mail, garbage pick up, and of course, Blue while we traveled.
We have much to be thankful for as we both continue to enjoy family, our home on Gilead Lake, and scaled down traditions. We live in a peaceful setting surrounded by nature's surprises and beauty. All three of our siblings and their spouses have been so supportive, helping us in a variety of ways.
Love,
Ron & Jan