Per her wishes...

GG, Ron's mother, passed away on 11-12-13. Today Ron's brother Rick, Tammy, Ron, and I gathered at South Gilead Cemetery when her ashes were buried next to their dad. Rick did such a beautiful and complete job of carrying out her wishes, and now it is done. She would have been 93 in February.
Ron did not get out of the car, but I was able to pull up close. Rick, Tammy, and I shared some closing thoughts, and of course, we had lavender and purple flowers, her favorite. It was a peaceful setting and felt like the appropriate way to say a final good-by.

And so, the fifth year begins.

The 4th year anniversary of Ron's diagnosis of acute myeloid leukemia has passed. And the fight continues. He no longer battles leukemia, but the fight is between his body and the side effects of his bone marrow transplant and medications. Next week he will see the doctor who is the Adult BMT director. He periodically sees Ron in regard to his chronic graft versus host disease. I am not anticipating any major changes in treatments or medications. He may order tests to monitor Ron's brain and lung changes. Grateful to be overall stable now.

As many of you know, a special Army friend organized the gift of an IPad for us when Ron relapsed in 2011. His wife died unexpectedly this week. Both of them have been amazingly supportive and caring. That's just who they are. Their community reached far and wide, and you may have seen messages from Mort and Janet. Janet, you are already missed by many. I always admired the way and manner in which both of you kept contact with so many and genuinely cared.

This was Ann Arbor Week

It feels like things are under control again. That means that we have a plan for April. We have just spent two nights in Ann Arbor, and I get around easily with my knee brace. I have no pain in my knee, the brace keeps it stable, but it can't heal until after arthroscopic surgery. My sister Anne is going with me to the surgeon this week. I want to make sure that we have a solid plan in place at the end of April when I have the surgery. That includes plans for Ron's care. Griffiths are with us a lot so understand what that means. We only live 10 minutes apart. I am planning to bring on board his home nursing service, so they can take care of some of the nursing things I do: dressing changes, flushes, monitor glucose, injections. I organize his medications, so that is just a matter of giving them to him to take. Ron's brother Rick and Tammy will help us too. My brother Gary and Vicki will take me for the surgery and help afterwards too.
We will see the head BMT doc in two weeks, so I will hear his perspective on things. Putting all that information together I am anticipating the best plan is to stay in our home with help. I can't imagine planning doing anything different. Everything we need is here. Other than the 3 steps up to the area of the house where our bedroom, both bathrooms, and the laundry room is, everything is very accessible. As long as a plan is in place, I feel in control.
Ron saw his eye doctor and had two ECP treatments this week. They decreased the medrol infusion dose which he has every two weeks, from 80 to 60. I can tell that he is way less hyper. Before he was almost manic for two days, especially wanting to shop..and then he would crash and sleep two days.
Ron's vision for reading is slightly worse, but he doesn't need new glasses yet. Because his eye glands do not function well, in addition to steroid eye drops, Refresh Plus eyedrops, we are now also using eyelid wipes. If the dryness persists even as humidity in the house improves, the next step will be a serum eyedrop. It is made with his own blood as an ingredient. We would get a 4-6 month supply made at a time, keeping it frozen until use...must come in individual vials like we use now. More Star Wars.
We are still enjoying basketball. GO BIG TEN! ---especially Michigan State.

Retreat on a military base

This picture from the area of Matt and Kate's home on MacDill AFB brought back many memories! Retreat is a work day ceremony at military bases. It signals the end of the work day with canon fire and music "Retreat". Everyone pauses and turns to face the flag or the sound of the music, knowing that the flag is being lowered for the day even if you are not able to see it. It is a time to display respect, your dedication to the flag, our country, and sacrifices that have been made. If you are in your car, you stop, get out and face Retreat. In this picture you see neighborhood children, including our grandchildren, pause their play for Retreat. AWESOME!

Some things don't change.

Although many things have changed, Ron continues to have a patriotic heart. He taped a small American flag on the wall next to his chair.
We are enjoying the NCAA basketball tournament and have filled out brackets. He also continues to buy lottery tickets. The difference is that he does not go back and check things. I have a big envelope of lottery tickets that I need to check on the IPad apps. Michigan and Indiana. Maybe we are big winners!
Unbelievably, it snowed again last night but will not last long. We are seeing a very slow shift to spring.

I am going to have arthroscopic knee surgery at the end of April. Until then, I continue to ice and elevate part of the day and am wearing a knee brace to keep my knee stable. 24-7. Wearing it actually feels good, and I do not have too much discomfort; this is a major inconvenience though! I am still adjusting from running my own life to hanging on for the ride.

Love, Ron & Jan

Not making this stuff up..

I really do need to plan an "all about Jan day". I am not asking that much; just wanted to go to the doctor to see what to do about my knee injury. So we are slammed with yet another snowstorm, and I had to cancel Rick coming to stay with Ron and the appointment. All schools are closed, and the storm will persist for a couple more hours...then -3 degrees tonight. Unbelievable! I rescheduled as soon as possible - March 31- but the doc called me, and she will see me Monday. More rest, elevation, icing. I do not have much discomfort.
I drove into Coldwater yesterday to pick up a copy of the MRI because I saw (of course, because I am a weather freak) that a winter storm was predicted. I do have two meniscus tears and water on my knee if I interpreted the results correctly. I do NOT have torn ligaments or tendons, so that was great news! That is it in a nutshell.
Ron's IVIG infusion went smoothly on Monday; it took 5 hours, and his immunity should be bumped up well. The pattern has been that he needs this infusion every two months. Both of us enjoyed visiting with Kirk, a family friend, who drove for us on Monday.
Love to all,
Jan

Living the Dream...

Our circumstances were really never a thought when we prepared for our retirement years. Who could have imagined? I had wondered how many good years we would have at our dream location, thinking it would be at least 10 more years and maybe longer. Ron was 59 when we retired and so young and active for his years. His first diagnosis of acute myeloid leukemia was less than two years later. So this dream has ended, and it is time to start in the very beginning stages of "what's next?" It is almost 4 years since Ron first started treatment.
It would make sense to find a place to live back in Bowling Green. Perhaps a good starting point would be a small apartment while a more permanent arrangement is figured out. We would keep our Gilead Lake home at first. Moving from this home feels overwhelming, and I would still like for us to have a small summer cottage. There's no crystal ball, and so much to think through. At this point, travel to somewhere warmer for a part of the winter is not possible due to Ron's medical needs which are met at U of M Hospitals. Even this thought process is a major project!!!
Meanwhile, my knee has continued to improve even though it is not right, and I had my MRI last night. Waiting for results. I am not using the crutches and can do what is needed here at home. Ron and I went to Angola and did some grocery shopping. I am putting my feet up more and still icing periodically. It doesn't feel like a big deal now.

Ron has had one of his sleepy days. His immunity is very low again, and he will have an infusion to boost it up next week. It will be a day trip, and a family friend is driving us, and I am talking way back to the 1950s for Ron and the 60s for me! See: I am starting to learn how to ask for help!
We are seeing the deer and turkeys in our yard every day. I love how nature surrounds us here and can hardly wait for the first signs of spring. A slight warm up is predicted during the next week. In the last two months we have only had 2 days where the high was above 32 degrees, many sub zero and one digit lows with ridiculous wind chills. Can you tell that I am tired of winter?!
Love,
Ron & Jan

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!