Grinding here at the end of 2012...

We are hanging in close to home as Ron continues to recuperate from his December 17-19 hospitalization. Ron will See his BMT doc on Wednesday; they added this appointment based on this week's bloodwork and skin flare-up which has been an issue for 3+ weeks now. Medication dosage change and steroid ointment has not brought it under control. He has not been back to physical therapy yet and is not getting worse but not getting significantly better either.
Ron's last days when he felt quite good were December 15-16. We are both ready to get on the other side of this current "bump in the road".

Merry Christmas!!

Hope you have special memories of this day. Today I was thinking about the many different places that we have celebrated Christmas...especially when the kids were little. Those are special memories. This year we are home at the lake and were not able to travel to BG because both of us are recuperating from sneezing and coughing colds. Actually I think that I caught it from Ron. We did travel to Jackson on Sunday to celebrate the season with Ron's mother who is almost 92 and his brother and wife. It may have been a bit ambitious since he was not really recovered from his hospitalization. He seemed pretty shaky on Sunday, so a two day trip was simply not a good idea. We have celebrated Christmas with Cale's and Jessica's family for many years, so it was sad to not be able to do that, but I could tell that Ron was almost relieved when I told him that I just didn't think we should make the trip. I don't think anyone would want to be exposed to whatever bug we have. So there is next year. We have learned to roll with the punches and do whatever is necessary to move forward with Ron's recovery.

Ron will have his weekly bloodtest tomorrow morning in Coldwater, weather permitting. I still have concerns about his skin flare-up and BK virus that affects his bladder. We go back to Ann Arbor for appointments on January 15-16.

Love to all of you during this beautiful season. Peace.
Ron & Jan

Recovery at Home Continues

Once we are home, there are a hundred things to do! That is not a bad thing. I still have to finish up a few Christmas cards..just threw everything off the kitchen table and into a box before we left for the hospital on Monday. I am thankful that Ron had a fever this time because there was no discussing whether to go or not, and the infection was treated relatively early. In August he was very sick before Matt and I took him to the ER. To everything there is a learning curve.

So what was it? He definitely had a urinary tract infection, a worsening cough which was probably bronchitis, and moderate skin flare due to his chronic graft versus host disease. He felt very weak Monday morning when he got up and had a fever. If he hadn't had the infection going on, the doc said that he would have given him an infusion of steroids to help knock down the skin changes. The nasal swab for flu viruses returned all negative. The IV antibiotics worked wonders and worked quickly.

My next questions for the doc will be what preventions could be taken when his cough worsens and his urine is noticeably different. That had been going on prior to the fever, or maybe you just have to wait to see if something develops. I hope his IVIG infusion 10 days ago will help his immune system.

So we have been hanging out at home to rest up and recuperate for the activities that are planned for the weekend and next week. I hope all of you are excited about your holiday plans and a break from your routines. Last night I enjoyed a favorite tradition of reading and just enjoying all holiday cards and letters: beautiful,thoughtful cards, wonderful pictures of relatives, friends, children and grandchildren, pets, memories of 2012,and a glimpse into the lives of so many people special to us. Although we are scattered far and wide, this visit draws all of us a little closer again. I will look at them several times.

Love and Merry Christmas,
Ron & Jan

Being discharged today!! Yeah!

Ron has not had a fever for over 24 hours and continues to feel better. Blood and urine cultures did not show bacterial growth. So we are going home this afternoon! Not much battery left and of all visits, this is the first time that I forgot the IPad charger!!
Looks like all Christmas plans can resume! Med changes are: increased daily prednisone and have added a second antibiotic for a few days at home.
Love to all,
Ron & Jan

Dr. Magenau has rounded...

Ron's primary transplant doctor is on in-patient service this week. We like him so much, and of course, it is a huge help to see the doc who kmows Ron's story. Well, we are not going home today. What was I thinking?? They are culturing Ron's blood, urine, and viral nasal swab as well as swabs for two other infections that are done always for all patients on admittance and weekly. (VRE and MERSA) So now Ron is on an IV antibiotic which is a broader spectrum one- cefipine. He as an infusion every 8 hours.

The doc did up his prednisone for a week to knock down the cGVHD flare-up of skin. It is not severe but noteworthy..probably moderate would be a good descriptor, and it is most noticeable on his arms. The antibiotics and prednisone changes are the only med changes. He may go home on a more specific antibiotic after the cultures are back and if they show any specific bacteria. He has been fever-free for 24 hours now, so that is the first step. Hopeful that we will go home late Wednesday. He really feels pretty good; just a little weak and coughing. He can't walk out in the hall until his viral swab results are back.

We are doing okay. In some ways I see it beneficial for Ron to have a full work-up. His chest x-ray was negative for pneumonia. I will continue to update the long version here on the blog because I can give all of you more detailed information.

I see a nap in my near future.
Love to all,
Ron and Jan

Hospital Visit

Decided to write a quick update before going to sleep for the night. Ron is doing well. He no longer has a fever, and several tests are underway, primarily to rule out blood infections, pneumonia, etc. He did have an elevated WBC count, and blood and other signs of infection in his urine. His cough has changed in the last two days to being more robust, for lack of a better word. He has had a cough for a few weeks, might be bronchitis now.

Having had several hospitalizations now and this being his 178th night in the hospital, we have a routine and realistic expectations for how things will progress. We can only hope that we will be able to go home tomorrow. At about 11:00, I went back to the ER area, picked up the car, and moved it to the Mott parking lot. I had packed overnight things anticipating a stay here. I have learned a lot since Ron's first hospitalization here in 2010 when I stayed in the same clothes for 3 days ( was in a daze) and brushed my teeth with my finger.

The nurse and doctor that have seen him here in the hospital are new to us...not a problem, but there is a lot of history to sum up. we will see Dr. Mag in the morning.

There was no phone reception in ER area most of the time, so I couldn't text updates.

ER Visit at U of M

Yesterday we had a Christmas celebration with Jan's side of the family. Cale, Jessica, Joey, Jack, and Allison (and the pugs) came for the weekend,too. A wonderful time.

This morning Ron woke up a couple hours later than usual...in fact, I was getting very used to him making the morning coffee before I joined him in the great room, but this morning he seemed to be sleeping in after a busy weekend. He was quite flushed when he got up, had a headache, and had a fever that was soon 100.9. The "transplant rules" are a fever of 100.2 or higher means an ER visit, so I called the clinic, and they wanted me to take him to Ann Arbor - U of M Hospital ER. We are now in a private holding room before his admittance to BMT in patient in Mott Hospital. He probably just has an urinary tract Infection. He is not as sick as he was when admitted in August for a UTI and pneumonia. He has not shown confusion this time. They have already given him a round of IV antibiotics, so although we are staying overnight, I think we will be going home tomorrow.

Day # 475: infusion Day at U of M

As I looked back on my blog, I realized that it actually had been much longer since Ron had had this type of infusion. It is called IVIG and will give his immunity a boost. Because blood products have given him hives in the past, he has benadryl,Tylenol,and an infusion of hydrocortisone as pre-meds.

Overall, it was a good day. (of course, I wasn't the one who had to be poked three times to get the IV started.) The pre-meds make Ron drowsy, so he slept for quite awhile. He has the infusion in a hospital-like room because it takes nearly 6 hours for the entire process. His bloodwork is good. Although he is on blood thinner, his clotting-platelets count has improved greatly to nearly normal range. It would seem that part of the reason for his previously low platelets count was that instead of continuing to circulate, they formed the bloodclots over a long period of time. Maybe. Today they told us that Ron will continue with lovenox injections for 3-6 months. For BMT patients, this is preferred treatment over coumadin. Ron has gained 5 more pounds this month...25 pounds total since Labor Day weekend. His BP is normal 127/77 and heart rate down to high 60s.

There has been some relief from symptoms this month. Ron's mouth has basically healed finally---can't even imagine having mouth sores for a year. He also has regained some of the feeling in his feet. This will help with his balance and walking. He sees his neurologist in January; one thing he will do is re-evaluate the peripheral neuropathy.

Today's bloodtests did show elevations in liver enzymes which can mean some cGVHD going on in his liver. Also, his skin has some red splotchiness; probably some chronic graft versus host disease going on there too, but it is minimal as his body continues to adjust to this month's decrease in prednisone. Today's pre-meds should help that, and his steroids will remain at the same dosage. There were no new med changes except to use less steroid mouth rinse.

When I looked back in the blog to October 2011 when Ron had an IVIG infusion, I couldn't help but feel grateful that I didn't know what "the long haul" meant when Dr. Mag told us that. It was also upsetting to relive what Ron was experiencing during the last 3 months of the year...and we still had no idea that we would stay in Ann Arbor until the end of May because of more complications during the first months of 2012. But not to dwell on that, but to be so very thankful that we are in a good place now. I am rambling tonight...just so thankful that there was nothing new to catch us off guard today and revved with anticipation of more return to normalcy in 2013. We have paid our dues this year.
Love to all and wishes for a joyous holiday season,
Ron & Jan

Medical Update

Ron will be seen by his transplant doctor on December 12th. The clinic contacted us to let him know that they have scheduled an IVIG infusion for him starting at 9:30 after his bloodwork appointment. This infusion will increase his immunity; it is the one with donor antibodies (from plasma) from over 1000 donors. It is given slowly; the infusion is scheduled for six hours and will be his third one this year. The Bone Marrow Transplant Clinic has its own infusion area, and Ron will have a room --like a hospital room. Dr. Mag and PA Tim will see him while he is in the infusion area.

Overall, I think we are continuing to move forward. Ron has weekly bloodtests at our local hospital to check for side effects from his Lovenox daily injections which he takes for the bloodclots in his lower left leg. I finally asked for a timeframe for the injections since I give them in his abdomen and hoped that it wouldn't be too much longer...at least six months was the answer, and actually I was glad that I hadn't asked sooner.

Ron's U of M appointments are a month apart now. He continues to have physical therapy twice a week. His PT center has a maintainence program for when he no longer has a prescription for PT. He can use their facility as needed for only $24 a month. It will be especially important to continue during our cold, snowy winter months. Also, it is a branch of the local hospital, and everything is sanitized more frequently than a fitness center.

We are enjoying decorating for the holidays. We only had a few of our things in AA last year. We both laughed when I opened some of the holiday storage tubs and said, "This is like Christmas!!". I also realized that I have too much stuff, and "less is more" came to mind. So as things change, it can still be good, very good in fact.
Happy Holidays!
Love, Ron & Jan

Linda and Nancy: cancer warriors

We have known two courageous women whose battle with cancer has ended in the last two weeks. I hadn't fully realized the camaraderie you feel with others who are members of "this club". And although their deaths are not about us, they are in part because part of our team of supporters is now gone, so a sense of loss is felt on more than one level. So we thank both families for the gift of positive energy and inspiration that both their loved ones and their caregivers gave to us. It is an honorable legacy.

Gilead Lake's "Sad Duck"...or is he a goose??

Ron saw "sad duck" swimming by alone this morning, heading for the public landing where he usually hangs out after his Canada geese family is flying. I first told you about sad duck in the November 13 post. This picture was taken during the summer when he was accepted as a part of a goose family.

One More:

Feeling thankful...

What a great Thanksgiving week celebration we had! It is still hard to believe that we were at a point in Ron's recovery that we could take an eight day road trip to Ohio, Maryland, and Virgnia. (especially after learning that Ron had bloodclotting in his left leg below the knee)

We did have some challenging driving experiences on the D.C. Beltway and Pennsylvania Turnpike...Ron is not driving yet. When travel advisories warn not to travel on Wednesday and Sunday afternoons of Thanksgiving, I can vouch that that would be excellent advice.

So we enjoyed Joey and Jack's birthday party to kick off the trip in Ohio with Cale's family; finally visited Andy and Lisa's home and Abby's school in Germantown, MD; and celebrated Thanksgiving at Niccole and Cole's home in Fredericksburg. Andy's family also travelled to Fredericksburg for the turkey feast. All so very thankful!

Medical update: Ron has tolerated the daily lovenox injections well. (treatment for bloodclots) I continue to learn (or to validate) that you can do things you never imagined possible. Driving home in holiday traffic on consecutive 7 and 9 hours days and giving abdominal injections were not on my radar, but you do what you must do. ...not too old to have a reminder about human nature.

Lisa made the arrangements for Ron's MD weekly blood test, and he has had another one back here in Michigan. His platelets # has consistently improved. Ron will have his next AA check up December 12. Physical therapy resumed today, and the swelling in his leg is almost gone.

Hope you are beginning joyful holiday traditions. As a card received last year said, "Christmas is not just about being merry but also finding hope and a sense of peace."
I thought those were such inspirational words.
Love to all, Ron & Jan

Happy Thanksgiving 2012

Just a quick update today...later, more about Thanksgiving travel. I will tell you that Ron and I have seen more traffic than we could even imagine. The 78 mile bumper to bumper drive from Andy's in Germantown, MD to Niccole's in Fredericksburg,VA took 4 and 1/2 hours!
Ron had a bloodtest in Michigan and one in Maryland to check the progress of his med (lovenox)for the blood clots in his left leg. It is working well! The next test will be next week.
We are extra thankful this year for family, friends, Ron's bone marrow donor, and the Bone Marrow Transplant Clinic at U of M. Thank you. Thank you.
Love to all, Ron & Jan
GO BUCKEYES!

November Monthly Check-Up

We traveled to Ann Arbor Sunday for Ron's now "monthly check-up". His appointments started early on Monday morning. It wasn't quite as smooth sailing as we had thought it would be. His bloodwork continues to show improvement in the production of platelets and red blood cells, and his other bloodwork values are improving with many in a normal range.

Ron had had swelling in one leg over the past two weeks, but there was only one day when it was significant. We had been out and about for an extended time that day, and with elevation, it diminished greatly. It didn't seem like anything new because over the past 18 months there had been leg and feet swelling on several occasions. What was different as we look back now, this time it only involved one leg. The doc ordered an ultrasound of his legs yesterday while we were at U of M, and it was discovered that he has bloodclots in his left leg below the knee. The treatment is daily injections in the abdomen of lovenox (to help dissolve clots) and weekly bloodwork to make sure that his platelets don't go too low. We had skills training for doing the injections and also what symptoms to watch for that would mean an ER visit.

The cold weather has returned, so Blue is not asking to go outside. He is a fair weather cat. We enjoy seeing the migrating birds on the lake-- various ducks, swans today, and too many noisy Canada geese to count. We are so thankful that we have only a few geese during the summer. There is a white duck that lives here year around and is part of a Canada geese family during the summer. When the geese resume flying in the late summer, he cries and cries when they take off, so I always call him "Sad Duck". He misses his family and feels lonely; I am sure. During ice fishing, he begs for fish from the fishermen. I don't know who takes him in or provides enough food and shelter than he can survive the winter, but we have seen him for a few summers now. The field camera shows deer in the yard every night. The buck has returned, too. We have an acre across the road where our garage and garden are located, and they pass behind it as they roam. The deer are moving again, and in the past 5 days I have seen a total of 4 bucks crossing the road...none up close thankfully.

Love to all,
Ron and Jan

Deer in my fenced in garden...

Both Ron and I are enjoying the field camera that the kids gave Ron. We had seen deer in the yard last evening, and now we have proof that they were in the garden, too. Notice the times and temperature!
Ron had PT today, and the two Amish ladies (a mother and daughter) who clean for us were here this morning. They have become good friends of ours. They first cleaned for us when I had my rotator cuff surgery in 2009.

Cruising...no longer grinding

Blue loves to sleep on our laps. More of a fair weather cat, he isn't meowing to go outside as frequently. There were deer in our yard today, and after a hard freeze of 20 degrees last night, the last of the leaves are falling. We made arrangements to have someone plow our driveways for us this winter. Now we just wait for the first snow.
Next week we will travel to Ann Arbor for Ron's check-up. We are anticipating tapering medication again. That is an on-going process until he is able to no longer take prednisone. Because of the prednisone and compromised immunity, he also has to take antiviral, antibiotic, and antifungal meds. BUT SO MUCH BETTER! I looked back at October and November 2011 on the blog and felt so thankful to be well beyond those months.
So grateful that Election Day is tomorrow! We will vote in the morning at Gilead Township Hall which is located out in the country. The polling locations were listed in the newspaper. Ours does not have an address...other than at the corner of Snow Prairie and Booth Roads.
Love to all,
Ron and Jan

Progress: Day 432 after Transplant

Making progress... The pictures below will help tell the story. You can compare Ron's breakfast pills in February and now in October. He continues to have 3 liquid meds and Advair that he takes also, but he no longer uses the inhaler. Now that is progress. Another sign of progress is that we have had to look for his cane a few times! He uses it about half of the time inside the house---then doesn't know where he left it! That is a good problem.
I have also included a World Series picture. We wish the Tigers had had a better World Series, but they have given us many hours of entertainment.
February 2012: Breakfast Pills

October 2012: Breakfast Pills

Thank you Tigers!

Fall Colors

The first two pictures are near Gilead Lake! The last one was taken on our drive up North near Northport, Michigan. Ron and I both love Fall, and this year is extra special.

Pure Michigan

Wow! Life is good if I haven't blogged for almost two weeks! Ron planned a trip up North in the Leelanau Peninsula area to see fall colors, visit casinos, go rocking on the shore of Lake Michigan, and make stops at a Barb's Bakery, Knot Just a Bar, and Kelcherman's apple orchard that we had visited in past years. What a great trip for us even though it rained most of the weekend. The drive north was sunny and treated us to amazing fall colors. It was 39 degrees and heavy mist when I rocked at Christmas Cove early Saturday morning. Before it started to really rain, I had found a few Petosky rocks (state rock of Michigan) and many beautiful rocks for my rock garden.

We spent a night in Ann Arbor on our way home because Ron had early appointments in the GVHD Clinic on Tuesday, October 16. He is doing very well at this time. His cough from August's pneumonia has nearly resolved; in fact, his pulmonary function tests showed the same results as February. Because he had some rash on his arms and back, his steroid med was not tapered, and I am putting a medicated cream on his arms daily again. As the doctor said, just a reminder that Ron has chronic graft versus host disease... but so incredibly better. His immunity remains compromised, so we are cautious and go through bottles of hand sanitizer. He remains on preventative meds, meds to treat his mouth, meds to treat his lungs; steroids, vitamins and minerals, and is weaning off all "mind altering" drugs, as I call them. His spirit and mood are positive, and he seems very much "his old self".

We continue to have special appreciation for our days at home and the normalization of our lives. Ron will have physical therapy at least through November and is making great progress. The walker is parked, and he uses a cane when out but walks unassisted at home about half of the time.

I plan to post a couple pictures from our colors trip soon.
Love to all, Ron & Jan
Go Tigers!!

Moving ahead...

...had a good trip to U of M on Wednesday, October 3. It truly feels like we are making a shift back to a more normal life. As Ron continues to be able to have lower doses of part of his meds, it feels like we are peeling back more layers that have masked his persona. It is great to be thinking more ahead instead of living in the moment.

Frustrating!!! I finished this blog last Saturday..then lost everything except the first paragraph in cyberspace!! So here I go again.

Ron and I returned to Bowling Green on Friday-Saturday: our first trip back to Cale's since Christmas Day. Of course, we had had visits with them at Ann Arbor and Gilead Lake. It was so good to spend time with them and see the changes in their home and also spend game time with them at Montesorri School. Joey and Jack demonstrated their two wheeler bicycle skills, and Allison didn't miss a beat as she picked a book and went to Ron for a story as soon as we arrived. Their soccer games were cancelled due to rain, muddy fields, and cold, so Jack and I made monkey bread, and we had puzzle-mania.
Grammy time is the best! (good visit with Jim T, too)

Ron and I continue to be amazed by the splendor of autumn. The fall colors are spectacular this year. The cooler temps are such a relief from summer, so the sweatshirts are out of storage. Perhaps missing this time of year last year has made us even more thankful for the beauty of the season. I am lesiurely gardening, and Ron continues to heal and make progress.

What's next?? Ron has an appointment in a week in the GVHD Clinic. His progress, treatments, and status will be reviewed and evaluated by the head doc of the BMT Clinic. He might adjust his meds. He will not see Dr. Mag again until November 12 which is 5 weeks; now that is progress! Ron's steroid dosage was decreased last week. That med drives the train for all of the preventative meds he takes.

Enjoy the beauty of the season!
Love, Ron & Jan

Sending positive thoughts to Coach Chuck Pagano...

Thinking of Indianapolis Colts Head Coach Chuck Pagano, wife Tina, and family tonight. He was diagnosed with AML last week and is having induction chemotherapy...same chemo drugs as Ron had in April 2010 after his diagnosis. Coach Pagano has a different subtype M3, Ron M4, but both are AML which is bone marrow cancer. Can't help but re-live what a shock it was to hear the word leukemia and clearly remember asking, "You mean he's going to have to spend the night in the hospital?" (in Coldwater, MI) Then the next day Ron was taken by ambulance to U of M, and we were told that his first hospitalization for induction chemotherapy would be a month long. My head was reeling with questions, emotions, and an overload of information about AML.

In some ways, it seems like yesterday when our world turned on its axis, but it was exactly 2 and 1/2 years ago today. In some ways, it seems like a lifetime ago.

So happy for a tie...

Stay tuned to see what the Detroit Tigers do when they win the American League Central! There are 3 games left, starting tonight. Go Tigers!

Manager Jim Leyland said that his best call/decision of the game was to get out of Prince Fielder's way when he jumped down into the dugout and ran through it like a bull after his 2 run go-ahead homerun in the 8th inning.

Day # 400 after transplant has passed.

This is a relaxing weekend. We are keeping busy here at home, but there are no outside factors affecting our schedule or the pace we're moving. September just might be the best month of the year. It has definitely been our best month of 2012, based on Ron's progress, the number of doctor appointments, and the weather!

Ron is reading for pleasure again as he continues to adjust to having sight only in his right eye. He has physical therapy twice a week...probably for at least another month. He practices walking some without his cane, and his balance issues are not as severe. Both of us are enjoying being outside more during this cooler weather in September. He continues to take several medications and has a weakened immunity system. Most importantly though, he is continuing to make progress, and his neurologist says that progress can be made for even 2 or 3 more years. He seems more like himself.

Ron has had side effects from many of his treatments and medications, and as medications have been reduced or eliminated, those changes in medications seem to help him return to himself. Some meds had especially affected his personality, but that has now reversed. His cure has come at a high cost to his body, but the leukemia is in remission, and his body will continue to heal. I hope he will be able to drive his truck again and play golf again next year.

One more picture...

Things worked out well for our anniversary dinner in Angola, Indiana. I was talking on the phone to my brother and telling him that we were going to eat at Ruby Tuesday, so he said that he would join us. Not realizing that it was our "itimate anniversary dinner" until after the waiter brought our drinks, Gary felt obligated (honored?) to buy our dinner for us. Ha! A good plan. (Drinks for us are Pepsi and carbonated water; Ron has no interest in wine, beer, or mixed drinks which is good because he is not allowed to have alcoholic beverages.)

I have to add one more picture, so someone can see the bridesmaids' bouquets, and also for Peggy who is in this picture. All of us were nearly the same height!

In sickness and in health...

So many of last Year's celebrations and holidays were spent in Ann Arbor. But it has been worth it to have reason to celebrate together again this year. Today.

Ron and I were married in LaGrange, Indiana, 42 years ago today. September 26 was chosen as our special date rather than a summer date when both of us would have been on break from school, so my sister (matron of honor) who had a baby due at the end of August, and my brother (who gave me away and was recently home from Vietnam) could both have key parts in our wedding. I was a first grade teacher and had school on Monday after our wedding, and Ron had graduate classes. We had a cake and punch reception in the fellowship hall and a small gathering at Ron's parents, then we were on our way "in marital bliss" as Ron puts it.

Hope I didn't make him sound like a jerk in my last blog regarding the missing "I'm sorry" response for the first 40 years of marriage. That is just how it was and a part of who he was. So Happy 42nd Wedding Anniversary to us!! I feel like celebrating!

Life is good.
Love to all,
Ron & Jan

Pure Michigan: Life at the Lake

Experiencing and Accepting Change

With my time and energy not so focused on "in your face" medical issues, I have been thinking more about the changes that we are adjusting to. Once again we were in a situation where someone did not recognize Ron although we were together and that person knew me. (And who is this with you? I don't think I've met him.) That is extremely difficult. When I see a picture of us before transplant, even I cannot believe how Ron has aged in the past year. Aging is a typical change during bone marrow transplant but not one you can really imagine or prepare for. (It just doesn't seem important when you're in survival mode.)

Another change is the slow pace that occurs when tackling any activity, but I am grateful to be able to be resuming more normal endeavors. I think this will continue to improve as Ron's mobility and endurance improves. He has resumed using the cane much more than the walker. His ability to walk is back to where it was at Christmas time... before the chronic GVHD complicated his recovery.

Another change is how people react to us. I think most people see him as having "the cancer treatment" look, and you can see that in their eyes. It is not a look of pity but more one of I'm sorry you're going through this. I know almost everyone can relate to a loved one with chronic illness. Total strangers reach out to help us as we at times struggle to get through a door, carry too much to handle efficiently, etc. Very nice and appreciated.

Another change is when Ron tells me that he is SO SORRY. He was never one to tell me that he was sorry and there were times I wished to hear that from him, so maybe that is why it is so painful to hear now. To put that in perspective, if he had shut my fingers in a car door, he might have said, "Why were your fingers there?", "You should have known that I was going to shut the door.", "I didn't hurt you on purpose." or something to that effect.

Just thinking about change tonight.

Good News from Ann Arbor

We are wrapping up this week's Ann Arbor visit today. Yesterday was a full day. Getting up at 5:30 to get ready and drive to U of M for 9:00 bloodwork to start Ron's appointments was a stretch for me! The last test ended after 5:00, and it was nearly 6:00 when we arrived at our Hamptom Inn room. I had made the reservation located next to Briarwood Mall, but I had no energy left for shopping, and it ended up that we didn't even go out for dinner.

BUT it was a great day. All of Ron's tests came back, and there was only good news. Top billing was no leukemia in the bone marrow biopsy!!! The CT scan of his head showed no new bleeding at the sites where he had hemotomas in August. That issue is still a total mystery to us because they felt the bleeding was due to a trauma in late July, but we were not aware of any fall or head-bumping. The bleeding was between the skull and brain in two areas without any visible bruising on his scalp. His eye test was stable as is his bloodwork this visit. He had also had a heart echo test, and he has a strong heart. (which I all ready knew...on several levels). What great news for us!

What's next? Ron will continue with out-patient PT rehabilitation in Coldwater twice a week, and his next AA check up is in 3 weeks. This will be the longest stretch of time between appointments with his BMT doc...ever. Day #400 since transplant is on the horizon. Ron started his "baby shots" yesterday. A bone marrow transplant wipes out immunity, so he had four 2 month old baby shots and also a pneumonia vaccine.

Thanks for your continued support and interest in Ron's journey. His body paid a high price to be leukemia-free, but he can continue to make progress physically, and now that he is able to have immunizations that should help protect him from infections.
Love, Ron & Jan

Update from Gilead Lake...

This is a Ron Hover update...not a Blue Hover update. This was a busy, yet okay week. We are on a roll. We enjoy Blue's antics more than ever; it is raining periodically, so everything is growing well and doesn't require time consuming watering, and best of all, Ron is on the mend again.

We spent two days in Ann Arbor for several year anniversary tests. Although Ron was aware that he was having some hearing issues, it was hard for him to find out that he has 40-50% hearing loss in both ears. However, with amplifying sound, he can hear very well, so hearing aids will work well for him. We are moving slowly with the hearing aids as Ron adjusts to this latest disappointing news for him. I say anything that can be fixed is not too bad.

In addition to the hearing test, Ron also had another CT scan of his head, an echo heart test, and a bone marrow biopsy. He has been sedated for his last two bone marrow biopsies and is still trying to figure out why he went macho and had the first 6 or 7 with just a local anesthetic. He does have some soreness for a day after the biopsies.

Next week we will meet with Dr. Mag for a regular appointment and hear test results. We will again be in Ann Arbor for two days. This time I made a reservation at the Hampton Inn next to Briarwood Mall. In addition to seeing his BMT doc, he will also see his symptom management doc, start his immunizations, and see two eye doctors. This will be his last eye appointment for a study that he was a part of. Instead of restasis, he has used a steroid eye drop for over a year now. It is Lotemax, and he has not had dry eyes which is a common side effect of a bone marrow transplant. The other eye doc specializes in neurological vision problems. Ron started being seen in his office after losing sight in his left eye.

We are enjoying the return of the football season and the cooler, wetter weather. Both of us love September and October especially. Hoping for a great autumn and steady progress in Ron's recovery!
Love, Ron & Jan

A reminder to not lose hope...

It feels like a miracle has happened.  Blue came home about 9:30 last night.  I was in the process of telling Kate the details of what had happened, and he popped up outside the window.  I think both of us were thinking that we were looking at a ghost!  Other than being skinny and smelling musty, he seems to be fine.  He was very thirsty and hungry.  He woke me up several times during the night being lovey and talking.  I wish he could really talk!! 
Thanks for all of the comforting words and kind thoughts as you have read about this last adventure of ours.  I thought it was unbelievable that he was gone, but it is more unbelievable that he is back. 
Love, Ron & Jan

Looking Back at This Difficult Week...

This has been a hard week for us. Blue has not been found, and we haves missed him in many ways. Those of you who have had pets die know what we are going through. Blue is probably our last pet, so that makes it even harder for us, and it was so unexpected. Cats are quirky, but Blue did not "take off" like some cats do.

Ron had physical therapy today. One of the walls is all mirror, and it was really the first time that he had had a full body look at how his body has changed and how he has aged through this recovery. It was hard for him.

So as Matt, one of Ron's PAs when Ron was going through chemotherapy for acute myeloid leukemia, would tell Ron, "You will have peaks and valleys...bumps in the road." We have been in a valley this week. We have had sadness that can physically make your heart ache. It is a dark place, but both of us are fighters and planners, so we have our calendars out and look ahead at what we must do and also to plan some things that we want to do. We were lucky to have had Blue for 12 years. He was a kitten that I rescued after he and his litter mates were dumped on a side road. Then out of the blue, he left us as abruptly as he entered our lives. Maybe someone else has taken him in, and he has once again been rescued. I would like to think that is true.

A Sad Day for Us

Ron continues to be on the mend from pneumonia. Yesterday we went to Coldwater , which is about a half hour drive, where he had his physical therapy evaluation at a rehab center. He will go there twice a week for physical therapy. Pneumonia kicks butt.

Then if all of this has not been enough, we have been kicked in the gut again. Our beloved kitty, Blue, has been missing now for two days and two nights. No sign of him at all, and I don't think he ever missed a meal. I have some hope that whatever happened, he might find his way back to us. We have had him 12 years, and this has never happened before. I am devastated; he was a source of joy for us every day. ..very cuddly and loving. All ready we have missed him so much.

Year Two of Recovery Begins

This week at home has been good for the soul. I now see a pattern in how the hospitalizations effect me. The stress of the visit doesn't really surface until I let my guard down. ...and that can be anywhere. So I have had my good cry which will hold me for quite awhile, and we move on into Year Two. Yesterday was the one year anniversary of the transplant.

Ron continues to recover from the pneumonia. It takes awhile. Neither of us has ever had pneumonia or even bronchitis, so we are in new territory. His weight is at a new low, so lots of my macaroni and cheese and special strawberry milkshakes are on the menu. I will be glad when he can start his immunizations next month. On Monday we will see our Dr. Mag; meanwhile a visiting nurse has come to the house twice this week.

So again, thank you for your support this year. Every message was appreciated, and every card has been saved. (sorry, kids..one more big box in the house) I briefly looked through them when I was gathering all cards in one place. I think it will be a winter project to look at them again.

Love to all, Ron & Jan

Going home....

We will be leaving Mott Hospital at about 4:30 to drive home. It is a two hour drive but might seem longer since we are so anxious to return to Gilead Lake. A nurse will visit at home tomorrow.

Kudos to U of M- Mott Hospital...

We will be back home for Ron's one year anniversary of his bone marrow transplant. What a year it has been with the first hospitalization for the stem cell transplant itself, the following hospitalizations on 8th floor University Hospital for a variety of complications, and then the last two hospitalizations at the new bone marrow transplant in-patient unit on the 7th floor of the new Mott Hospital! The BMT Clinic for regular appointments is also on 7th floor.

We wonder what "weather surprises" autumn will bring to Michigan. Both spring and summer were so atypical. Regardless, just spending it at home this year will be appreciated at a higher level.

Ron continues his recovery from this bump in the road. A couple additions were made today to help rid him of his lung congestion. He also will receive an infusion to help treat the two same persistent viruses that surfaced again on Saturday in lab cultures. Infectious disease and our Doc Magenau believe the one is a false positive. The plan is to definitely go home Monday. I did all of our laundry this morning. The family lounge is huge, has a kitchen, 3 washing machines and 3 dryers. They even provide the laundry detergent!

Yes, kudos to the care-- medical, emotional,and logistical- received here at the University of Michigan Medical Center. They call it "The Michigan Difference".

(Regarding basket ball and football, we continue to be Spartan and Buckeye fans!!)

Admission for Transplant: One Year Ago Today

No specific results from tests to report, but Ron is much better. His pneumonia and UTI are resolving with the course of IV antibiotics. (so probably bacterial infections) Numerous tests have been taken, but all reports after the original diagnosis of pneumonia from Sunday's chest x-ray and the CT scan of his chest and a urinalysis on Sunday, none have shown a specific organism. All viral and fungal tests were negative.
They have stopped one of the IV antibiotics, and he will continue with the others through the weekend, and we will probably go home Monday.

After returning home, the physical therapist has recommended PT in an out-patient facility. Ron would go twice a week, and I am starting to research what is available near home. I think these outings would be good for both of us. His strength is okay, but he will need to develop endurance and improve balance.

So things have turned around again. As a nurse once said, let's get this train turned around. Ron has had some of his favorite nurses and techs and a couple new ones. Actually, our #1 favorite RN (except for our Andrew, of course) has been his nurse quite a bit. That continuity means a lot. We are feeling safe here and full of trust that this medical team will resolve Ron's acute issues. Having his BMT doc on service all week has been fantastic.

Thanks for continuing to follow Ron's recovery.

A Few More Days..

Ron will need to remain in the hospital a few more days. At this point the two IV antibiotics that he is taking are hospital only administered ones. There have been 3 issues to address. Two are mostly resolved now. That is, the antibiotics will resolve a urinary tract infection. The second is a head CT scan showed bleeds between his brain and skull on both sides of his head. It appeared to be from a trauma 1-2 weeks ago, and a repeat CT scan Monday confirmed that it is not continuing to bleed, so neurology will do a repeat scan in a month. He is cleared from that issue at this time. Neither Ron or I are aware of any fall or head bump in that time frame. As a precaution he is receiving platelets transfusions to keep his count above 80. 150-400 is normal. His is usually around 50-60.
The work in progress is his pneumonia. The August 6 x-ray was clear. August 12 x-ray showed pneumonia in both lungs with the left lung having more. Because the pulmonary and transplant teams believe more information about the pneumonia would be beneficial, he will have a lung scope tomorrow to take pictures and draw a sample to identify the infection. They would of course like to have Ron take whatever medication will be most effective and specific for his infection. He will probably remain hospitalized until at least the end of the week and probable into next week.
I am able to stay in Ron's room; the Bone Marrow Transplant unit is on the 7th floor of the University of Michigan's new Mott Hospital.
Love, Ron & Jan

I am wired, so I blog...

In a few words, Ron is back in the hospital at the University of Michigan. His symptoms had escalated especially Thursday through Saturday, so the clinic kept in contact daily. As it turns out, he developed a urinary tract infection and pneumonia. Matt went with us to the U of M E.R. This morning. It was pretty rough with the confusion, tremors, and emotional aspect of feeling so sick and being back in the hospital again. Now he is resting so peacefully, so his IV meds are doing their work.

Ron will be in the hospital 2-3 more days. He is in the Bone Marrow Transplant unit on 7th floor in the new Mott Hospital. It is spacious and high tech. Luckily, his primary BMT doc is on service this week for in-patients. He knows Ron's story, so that makes it incredibly easier. When the third medical person in the ER said, "So what brings you to the ER today?" I thought that I was going to have a meltdown. Overall, they started his bloodwork and other tests quickly, and also started his treatment before moving him to Mott. The hospitals and clinics are all connected, so they just moved him in his bed. Dr. Mag examined him and talked to us as soon as we arrived in Mott, and he will see him again in the morning.

Bump in the Road: Day #350 after Transplant

Up late watching the Olympics and cleaning the house because the Amish cleaning ladies come tomorrow.(Some of you will understand this cleaning before the cleaning ladies.) It will be all worth the late night by tomorrow afternoon. I can just try to relax and enjoy having things organized and a clean house and also look out at the newly mowed yard. Thanks, George!
We did make our overnight trip to Ann Arbor. Ron's recovery is at another bump on the road. He is much weaker and has poor balance. On Monday they did an EKG, urinalysis, drew blood to test for several specific more serious viruses and blood infection. They also took chest xrays and did his regular blood tests. At this point nothing has developed in the cultures, and the virus tests were negative. The chest xray was clear. So that is all good news except that we still don't know what is causing his symptoms. It could be a run of the mill virus but is affecting him more seriously because of his compromised immunity. He has slept a lot today, and has not had a fever. I hope tomorrow is a much better day. His regular blood tests were okay...consistent with two weeks ago. It is a stressful mystery.

Transition just beginning...AUGUST!

Time for a weekend update! We enjoyed our week without traveling to Ann Arbor. Also it is not difficult to feel the beginning of transition within our family. August is always an eventful month, and when I flipped the calendar, I could only imagine how things will be different by the end of the month. September and October are two of my favorite months, especially living in Michigan.

Ron's doctor appointments start at 7:45 tomorrow morning, so we are traveling to Hampton Inn North in Ann Arbor this afternoon. I am concerned that he could be slightly dehydrated. He was wobbly yesterday, and the physical therapist had come to discharge him from home services, but she did not do so because of his unsteadiness. When he had a central line, I could give him IV fluids, but I don't do poking for an IV line. I know that he is not drinking enough, and I have been charting and using a timer to take and encourage him to drink 4 ounces of water every half hour when he is awake, but as they say: "you can lead a horse to water but..." sometimes he will drink Pepsi; he loves orange juice but because of his cGVHD of the mouth can't stand the acidity. If he needs fluids, they will be able to do that at the clinic tomorrow.
Love to all, Ron & Jan

Sunday, July 29, 2012 at Gilead Lake

We are looking forward to the coming week without a day in Ann Arbor! Hard to believe that it will be August and that thoughts are turning to the next school year for kids and grandkids!

I often feel grateful for having retired from teaching after the 2008 school year. Our first year of retirement was "mostly above expectations." Then during the summer and fall of 2009 I had rotator cuff surgery and rehab. (no longer seems like a big deal) Ron was diagnosed with acute myeloid leukemia in April 2010.

I am still hopeful and believe that we will be able to return to our travels in the fall. We are planning to go to northern Michigan in October and to Virginia for Thanksgiving. As Ron continues to improve, we think we will be able to get down our 33 steps to the pontoon and take boat rides. Most of the summer weather has been too hot for going out on the lake; Ron is sensitive to hot temps. Also, I have all ready started to imagine my gardens for next summer. It feels good to be anticipating trips and life at home too.

Grind... Another Day in Ann Arbor: 11 Months After Transplant

We definitely need a "week off" from our Ann Arbor trips. Because today's first appointment was at 9:00 at a new office, we were up early to prepare for the 2 hour travel time. He met with a neurologist for an evaluation. Now this might not seem like good news to you, but he told Ron that it might take 1-2 years more for his body to reach its peak recovery. The assault on his body with leukemia, 7 rounds of toxic chemo, the bone marrow transplant, viral and bacterial infections that required more hospitalizations, steroids and immunosuppressants to combat the acute and now chronic graft versus host disease have serious side effects,especially muscle atrophy and 60 pound weight loss, and with the loss of vision in his left eye...his recovery is slow but still a work in progress. There is no indication of a major neurologically based disease or condition that will cause deterioration of motor skills, so we are hopeful that he will get much better over time. It was such a relief to know that this isn't "as good as it's going to get." He will keep grinding.

A Day in Ann Arbor: last rituxan infusion

I feel wired tonight..guess I am glad that the series of four Monday infusions to treat Ron's GVHD of his skin are finished. It has been an effective treatment and hopefully will continue to work for weeks or months. Sometimes the GVHD just fades away; now that would really be awesome. It is a treatment that could be repeated after a period of time if needed.

Next Tuesday's appointment with a neurologist and an infusion of zometa for strengthening bones will make the sixth consecutive week that we have traveled to AA for appointments. We are planning to be able to stay home July 24-August 6. Yeah!

Ron's mouth is still painful but improving. He is going to try a steroid gel this week as he continues taking the stronger antiviral tabs. He also has new glasses. The prescription changed some, and he changed from a progressive lens to a bifocal, so his eye doesn't have to work so hard to find the area of the lens that brings clarity to his vision. He said it seems 100% better for him.

My flowers are hanging on for cooler, wetter weather, and my small garden is definitely stressed by the heat. It is much better for Ron when it is cooler and we walk outside. He has been using his cane rather than the walker when we go walking outside. It was a good week. I am optimistic that we are in a good place in his recovery medically and that he has renewed motivation to exercise.

Monday, July 9, 2012: Doctor Day in AA

Monday was a long day!! My last entry did not mention the trouble that Ron has had with GVHD of his mouth. This means sores that are painful, and that has affected his appetite over the last 2-3 weeks. He had lost 10 pounds over the last 3 weeks, so he is back on megace, an appetite stimulant. He also now has a topical med that numbs and treats the sores. That is in addition to a steroid mouth rinse and an oral adhesive rinse that he had been taking. They also changed his antiviral med to a more potent one, Valtrex. All of these changes are to help the discomfort he has had with his mouth.

Ron has his Monday infusions in a hospital-like room. He has to have a new IV each Monday since he no longer has his central line. Ron is in a hospital bed because it takes a few hours. When the PA and doctor came to the room, both observed the twitching, tremors, and rambling conversation that seems to affect Ron when he is in a light sleep. It concerned them enough that they want him to be off sirolimus, his immunosuppresant for this week. Another change. The steroids keep the GVHD inflammation at bay, but it weakens his muscles. Still looking for the right immunosuppressant that doesn't overly affect his nervous system...so he does not have to take steroids which make him weaker.

Sunday we had traveled to Ann Arbor and stayed at the Med Inn inside the hospital. That was great! His pulmonary function test at 8:00 showed improvement in his lung function. Then he had his bloodwork done, and we were able to go back to our Med Inn room for over an hour before his first doc appointment at 11:00. From there we went to the infusion center in his clinic and were there until 5:00. Ron only has two more days scheduled at this time for appointments in Ann Arbor in the month of July. Yeah!!

Love to all,
Ron & Jan

Coping with Heat Wave 2012

I am looking forward to tomorrow! (the cooler temps) This heat wave has been physically and mentally oppressive. My outdoor time has been limited, and when out, I have concentrated on just watering pots, garden, and other plants enough to get them through this weather. I can't believe how much my energy level is affected.
The heat bothers Ron, but we did sit out on our upper covered deck to watch 4th of July fireworks across the lake. Very pretty, and our bed was only about 25 feet away...and air conditioning even closer!!

Overall, Ron has had a good week. He is on less steroids this week and had no dental or eye appointments. Both of us work to stay positive and keep grinding. It is discouraging at times if we think too much about how our lives have changed. Cooler weather this week will be a boost, and we will be able to go outside again to walk.

We will head out to Ann Arbor on Sunday afternoon because Ron has appointments all day Monday, starting at 8:00. We were able to get a reservation in the Med Inn which is the hotel inside the hospital. Very convenient for us.

We hope you're making great summer memories as you enjoy family and holiday activities.
Love,
Ron & Jan

Monday Tomorrow: Doctor Day

We will be off to Ann Arbor by 8:00 tomorrow. This is the second of four infusions to help Ron fight the graft versus host disease that affects his skin and possibly his lungs. His skin did flare up gradually during the week, so he is back on steroids. Overall, he continues to progress, and the PT who did his first evaluation re-evaluated him this week. She was pleased with his progress...especially in his legs. He is now focusing on balance, biceps, and walking.

Matt's family is here now at their cottage. (third generation cottage.) It continues to be fun having grandchildren in the house, and Cole will be back in a week too. Niccole continues to cook for us and help with the housework and yard work. I have even read a book! It is still very hard for me to feel truly relaxed, but being able to read a book shows progress. I see many things to do inside and out, but what has been accomplished during a month at home is good. (Niccole even cleaned and organized my garden shed. She has put an impressive amount of trash on the curb each Monday.)

I think our 4th of July might be scaled back a little. How wonderful to be home for a get together with part of our family! Visits with the kids' families has been spread out which makes it better in some ways although it is fun seeing everyone together too.
Have a wonderful holiday!
Love, Ron & Jan

Rituxan Infusion- 4 consecutive Mondays

I thought I would give more information to you about Ron's infusion...for those of you who would like to know more about it! Niccole, Ron, and I left for AA about 7:00 AM today. His bloodwork today showed that the last week of meds have brought his skin GVHD under control. The T cells from his new bone marrow had been revved up and attacking his skin. The infusions over the next 4 Mondays should sustain his progress. Ron will also have a visit from his BMT doc and PA each Monday.
This first infusion takes 4-6 hours. It is monitored closely for any allergic reaction. This means starting it very slowly and checking BP, temp, heart rate, etc. every 15 minutes at first, then 30 minutes,and increasing gradually the flow of the med. The infusion is antibodies and called Rituxan. It will be effective for many months after the 4 week regimen and should help his skin and lungs (shortness of breath). He will also stay on a low dose of immunosuppressant but discontinue the steroid pills. (This is a good thing.) Of course, we are hopeful that this will be the balance needed to greatly minimize his graft versus host disease. We are getting closer.

Day #305 Since Transplant: Weekend Update

Sunday is slipping away, so I am blogging while Ron is napping. We made our Monday-Tuesday trip to Ann Arbor as planned. Ron's skin flare-up is not being controlled by ointments since he was taken off immunosuppressants about 6 weeks ago, so he is now back on a new immunosuppressant and steroids. (predisone). While he was at the clinic they also gave him an infusion of steroids to knock down the inflammation of the rash/blotchiness of his skin. He was also having changes in his mouth during this GVHD flare-up. He is scheduled to have weekly infusions to treat the GVHD, so we will be traveling to AA on Mondays for the next four weeks. Niccole is staying with us through July, so it will be great having another driver for these day trips. Ron's skin has improved some this week, but it is evident that he needs some additional treatment.

On Tuesday Ron had an appointment with a neurology opthamalogist. There is nothing that can be done to restore any of the vision in his left eye. He did give him a new prescription for his right lens.

We made a lot of progress unloading and sorting boxes this week. It was very hot and continues to be dry, so I am not planting anything else. It takes a lot of time to water my flowers and vegetables, so I have not watered any of the acre+ lawn. It is amazing how I have learned to say, "Oh, well." and just gone on. This week we also had to deal with no electricity for 24 hours and fraudulent use of my credit card. When I mentioned identity theft to my grandson, he said "oh, Grammy, no one could look like you." (I laughed and said now that is the truth!!)

Army friends from Florida visited today, and we had a good time and good laughs as we reminisced about army days and caught up on our families. Now we are taking it easy to be rested for the trip to AA tomorrow. Ron will see his BMT (bone marrow transplant) doctor on each Monday.
Love and best wishes to everyone,
Ron & Jan

Happy Dad's Day & Weekly Update

Happy Father's Day to all you Da-Das out there. We needed rain so badly here in our area that I don't think anyone complained that it rained on this special day. Ron continues to grind. His skin outbreak was widespread enough that I called the clinic for advice, so we are making a trip to Ann Arbor Monday and Tuesday. He already had had an opthamologist appointment scheduled for Tuesday afternoon. Now he will have his bloodtests on Monday and see his BMT doc. He has been off immunosuppressants for six weeks, so this has aggravated his GVHD of the skin and mouth. His eye appointment is 3-4 hours, and we may have a better understanding of the loss of sight in his left eye. We are both very pleased with his physical therapist who is visiting twice a week. He is primarily working on strengthening his hips and ankles which help with balance. He also is working on arm and shoulder strength. He walks mostly with the cane because either Niccole or I walk next to him. Ron also started his dental work this week. He has several teeth that need repair. Many ordinary events of everyday living are more special to us. Going to the little grocery store in Orland, IN, which is about 5 miles from home; seeing the same greeter in Meijer in Coldwater; doing lobby banking in Bronson, MI, with hugs and happy greetings from our friends who work there (yes, we continue to enjoy lobby banking and the personal touch from our home PNC.); watching the sunrise over the lake and watching the sunset out by the garden. The support of family and friends continues to amaze us. We are so grateful for all of you. I plan to at the least blog on the weekends to summarize our weekly events that bring Ron closer to his recovery. It is still a work in progress. Tuesday will be day #300 since his transplant.

On Monday Ron and I traveled back to Ann Arbor for bloodtests and two doctor appointments. His bloodwork results are good. His platelet count remains low, but everything else is in a normal or near normal range. The doctor did start him on medications for GVHD of his lungs because Ron has noticed some shortness of breath. They are asthma prescriptions. Ron's physical therapy has begun at home. He is working on balance and muscle strength primarily. His legs are MUCH stronger. She did recommend for safety reasons that when he walks alone, he should use the walker and not the cane yet. So there is a lot of work yet to do, but we are up to the challenge.

AOL and Blog

I have received assistance to stop my aol address from sending spam. I hope it works! Let me know if you receive additional spam, so I can take further action. So sorry for any inconvenience. My blogger dashboard changed, and it has not been allowing me to skip lines or paragraph. A giant paragraph is harder to read and offensive as a former English teacher. (one of my former roles)

Can you believe it's June???

It is wonderful being home. We are adjusting to how life at home has changed for us and at the same time, appreciating the wonders of nature that surround us. We have been entertained by kingfishers diving into the lake and hummingbirds,cardinals, finches, and other birds that come to our feeders. I have seen deer behind our garage, and we have seen swans and sandhill cranes fly overhead. Our families have pitched in to make it feel like home with gifts of outdoor flower pots and the dock put in. George continues to mow for us, and they arranged to have our Amish ladies clean before we arrived home. Amish girls came a few days ago in horse and buggy selling strawberries, so we have been eating huge strawberry shortcakes. We will get our pontoon boat soon. We have a few vegetables planted in the garden, and I have decided to plant a pumpkin patch again. I guess a lot has been accomplished in our first week at home, but my to do list remains long. I love yard work and gardening but don't want to do too much to maintain. Ron will go back to see two of his doctors in Ann Arbor on Monday. I can judge how well the day is going for him by whether he is walking mostly with his cane or choosing to use the walker at least part of the time. It is a challenge to entice him to drink enough fluids each day. Dehydration makes him feel weaker. We are both learning to make adjustments for the loss of vision in his left eye. If I walk to his left, I keep a hand touching him, but it is better to stay on his right side. His depth perception and reading with ease are diminished. He has progressive bifocals, but I have wondered if new glasses might help his reading. Graft versus host disease GVHD continues to be an issue. He has a variety of ointments to treat his flare-ups but is no longer on pills to suppress the rejection. He has GVHD of his mouth which causes dry mouth and occasional sores. He continues to use his steroid mouth rinse. Chronic GVHD can last for years. Ron's weight is staying in the upper 150s. He eats well and is encouraged to eat high calorie food and desserts, so the result of my stress and joining him in his high calorie food has not had a good result for me! I am so glad to be active again in the yard, gardens, and house. Ron does have some neurological symptoms as a result of 7 rounds of chemotherapy, the transplant, and the numerous meds that he has needed during his recovery. He will start a thorough evaluation and appointments in a neurological clinic in July. He has tremors that vary in intensity...mostly in his hands, and that has made it difficult to impossible to email or text. He has re-mastered using the remote control! He can barely write on some days; other days it is legible. All of that being said, the return of his personality has been quite remarkable. He sounds like himself again but has struggled with the loss of vision in his eye especially and worrying about what could happen next. That seems like perfectly reasonable reactions to what all he has been through. We never could imagined that he would have so many complications, but the leukemia continues to be in remission. Overall, I think he is doing quite well, and today Kitty Boy Blue has started napping with him at the foot of the bed. Good medicine. Love and good wishes to all of you. Bring on the summer! Ron & Jan

Home Sweet Home

It is great being back home at Gilead Lake. Ron continues to cope with physical and emotional issues but I think he is doing well. He is too rough on himself at times. When the doctor took him off his immunosuppressant pills, we realized how much it had affected his persona. He is much more himself now. Moving home-home, both packing and unpacking, has been an extended work in progress. Of course, there is no rush, but I am anxious to have everything put away. I have done a little gardening, but the temperature was near 100 degrees today! Getting past the fatigue caused by the last hospitalization, the last series of doctor appointments, and the move itself has been a priority. Niccole came home from Virginia to spend the weekend with us. She did yard work on the beach area, helped unload the vehicles,and gave us moral support. She is planning to spend 6 weeks again with us this summer. Ron has had one fall since we came home...so glad she was here to help me get him back on his feet. He jarred himself and bruised his hand. An injury caused by a fall is a top concern. When he doesn't follow the safety precautions is really the only time that I get mad at him. Love to all, Jan

Surreal!! Going Home on Day #275 after Transplant!

Most things from our apartment were taken to Gilead Lake on Wednesday by sister, Anne and George. We didn't even see them because Ron had three doctor appointments. The truck was fully loaded, and a hallway of boxes etc. was loaded into their car. (by them). My mission is to fit everything else into the Edge tonight and tomorrow morning. I can do it! Wednesday's appointments were exhausting as we confronted emotional issues, symptom management, and the news that the loss of vision in his left eye is permanent. Ron also had his full pulmonary function evaluation but we don't know the results yet. So, all of this rolled into a long day 8:30-3:30 at the hospital. Today he only had physical therapy at our apartment. His physical progress is moving along well now. He walks unaided in the apartment, and mostly uses the walker outside but is transitioning to a cane. We will be home for 10 days before return appointments, so we are planning to see if progress can continue without a physical therapist...just using guide sheets given to us. A therapist could be prescribed again at the June 4 appointment. We are optimistic and so happy tobe moving home-home to Gilead Lake. Love to all of you for sharing this two year journey with us. We never felt alone, and whether you have been a reader of the blog,or one who sent cards or notes or prayers or good wishes or cookies or flowers or food or texts or emails,or inquired about our well-being to our family members, etc., etc., we are thankful and indebted to you for making a difference.

Moving out of apartment Friday!!

The week is underway. Today we had a long appointment with Ron's Bone marrow transplant doctor and physician's assistant. We had many questions about his last hospitalization, changes in medications, and the loss of vision in his left eye. The plan is in place to go home on Friday. That would be home-home to Gilead Lake and permanent. Of course, there will be frequent trips back to Ann Arbor. Remaining this week are 3 doctor appointments (symptom management, pulmonary function, and opthamologist)as well as 3 physical therapy sessions. Last weekend was beautiful at the lake. We ate on the deck and mostly just enjoyed being there. Family is taking good care of us in many ways...very nice to have the yard work done and house cleaned, so we could just relax as much as we wanted. There was nothing that had to be done, but we did pick up some flowers in Bronson and took care of a couple minor projects. We can hardly wait to get home on Friday. More later, love to all--Ron & Jan

Continuing to do well...

After the occupational therapist made her visit, she signed off on us needing any more adaptive equipment, education in safety issues, or care-giving. So Ron will only have a physical therapist during the remainder of our time in the apartment. He is taking responsibility to exercise on non-therapy days, and we walked even further today. I can now see a little muscle definition in his calves and his skin is beginning to tone. His legs were/are so thin. During Ron's last hospitalization, they took him off two more medications, and that seemed to help clear his thinking quite a bit. One was his med that suppresses the conflict between his transplant cells and his own cells. Ron continues to show evidence of graft versus host disease of his skin. There are ointments to treat cGVHD of the skin rather than pills, so that is what is going on now. Some of his skin is reddened like a sunburn, and there is slight rash a couple places. He seems much more like his old self; the words feisty and cranky have even come to mind...much better than docile and lethargic. We are going home for the weekend, returning to AA for appointments everyday of the following week and hope to get the clearance to make our permanent move Memorial Day weekend. Holding our breath, Ron & Jan

Summer Weather in Ann Arbor

Back at the end of March I had posted this view from our apartment in Ann Arbor during fall, winter, and spring. Here is a summer view. Ron is continuing to recover well from his UTI and staph infection in his blood. He is on a course of an oral antibiotic for 14 days. Amazingly, he never had a fever with these infections but became extremely weak, confused, and lethargic. At the same time he was losing the vision in his left eye which was probably unrelated to the infections and a separate event due to low blood pressure perhaps as he slept, causing a lack of oxygen to the optic nerve. We will never know for sure. At times it is a gray disc blocking vision in most of the eye but being able to see a little around the edges or see outlines of people. Usually, he only sees black in that eye. He was not able to see the large E on the eye chart when the opthamalogist examined his eyes. We continue to be on track to go home-home in 2 weeks. We have adjusted the actual day of departure slightly because the physical therapist made her first at home visit yesterday, and she will work with him 2 weeks here. Because he is also going to have occupational therapy which needs to be in the apartment, all of his therapy will be in the apartment instead of going to an out patient facility. (insurance issue) That is okay...another way to avoid germs. Now the plan is to move home on Friday of Memorial Day weekend. Therapy will continue when we are at Gilead Lake. Ron is walking with his walker and can take some steps without it, but the therapist told him not to do that yet to ensure that he would not have another fall. When we walk outside, he uses the walker which has a seat, so he can sit and rest if needed. We are getting there! Love, Ron and Jan

Two more weeks in Ann Arbor??

Things are going well at the apartment. Both of us have been taking naps and enjoying relaxing on our own schedule. (within reason!!). It is also good to be catching up on household tasks and starting to organize our belongings for the move home. Ron did a great job of exercising this morning, and we went on a walk outside early this evening. Both occupational and physical therapists will come to the apartment Monday, May 14 to evaluate and work with Ron-- probably for about two weeks. Then we plan to move home-home, and he will continue to have out patient therapy in Coldwater. This all seems very probable today. He also has several doctor appointments during the week of May 21 and follow-up appointments are starting to be scheduled for the months to follow. We are planning a test run to Gilead Lake the weekend of May 18-20, returning for therapy and appointments starting May 21. Part of Ron's therapy will be learning adaptations necessary due to the loss of vision in his left eye. His 5 weeks in Heartland Rehab did significantly strengthen his muscles. I am guardedly optimistic that he has finally turned the corner in his recovery. Love to all, Ron & Jan

An Amazing Turn-Around!

Our hospital room belongings are packed, and we are waiting for Ron's IV antibiotics to finish. He is going to go on pill form antibiotics and have both IV lines removed. His Neostar port was removed yesterday. He is on less medications overall and going home to the apartment with me. PT and OT will start in the apartment on Monday. We are back on track to move home-home by the end of the month. Unbelievable!! Thanks for your prayers, good wishes,and positive thoughts that you sent our way. Love, Ron & Jan

Getting Better!!

Ron has improved in amazing fashion since Monday and Tuesday's events. The primary cause of his physical changes as well as the increased mental confusion seems to have been more related to his infections than a neurological event. He is now able to take short walks in the hallway with his walker. Monday and Tuesday it took two people to help him sit up in the bed, to stand, and to transfer him to a wheelchair. He had to be moved guerny to bed for various tests by 4 people using a draw sheet under him. His balance and coordination were severly affected. He was only minimally communicative and very confused. I have been sleeping in his hospital room, and when I woke up Wednesday morning and turned to look at him, he said, "good morning, Teach." in a strong voice. I couldn't believe it. It was like someone lifted a curtain...not to say that all confusion is gone, but he is amazingly better cognitively and physically. The physical therapists and occupational therapists who have evaluated him here and worked with him have gone from believing that he would require intensive acute therapy in a hospitalized setting to thinking we will go home to our AA apartment, and he will have therapy at an U of M out-patient facility probably 3x a week. He will also have occupational therapy in the apartment, so both of us can learn coping skills with his vision loss in his left eye. The same therapy will then continue at home-home by the end of the month. (to simplify things, we call the AA apartment home and call Gilead Lake home-home) battery low on iPad; will post and close, so I can get this additional info out. Love to all, Jan. (Ron is asking me questions about the Tigers!!)

A Change of Plans

Things have changed again. We have had a rough couple of days. Ron did come with me to the apartment all day Sunday, but he was weaker (used a wheelchair instead of walker) and did not walk or exercise while there. Monday morning he had his regular appointment with Dr. Mag at the BMT Clinic. He was noticeably weaker Monday morning and less communicative. On the way to the doctor he told me that the vision in his left eye had started to gray on Sunday. At his appointment he did not talk much, and had great difficulty standing even with support. The doc thought he possibly was developing a cataract and had Parkinson's characteristics that needed to be investigated. I had needed help getting him out of the car into a wheelchair. Dr. Mag arranged an MRI and appointment with neurology for later in the week. At checkout he had forgotten that he had even seen Dr. mag. We returned to Heartland, and he had OT and PT in the afternoon. While eating dinner I asked him if his eye had improved or was the same. He covered his right eye and told me everything was black. I went immediately to his nurse who called his Heartland doc, and she (the doc who called me immediately) told me that he needed to go immediately to the ER via ambulance. This progression of events occurred very quickly. It was about 7:00 PM. Ron had quick, thorough, and lengthy care from a private room in the ER. ...bloodtests, exams, neurology team evaluation, opthamalogist exam, ER doc and nurses, CT scan and then MRI...tests wrapped up about 4 AM. He was admitted, and transferred to the BMT hospital unit on seventh floor in Mott. ..exams and many more tests ordered by various consulting specialists during Tuesday and Wednesday have led to the following information. He has several infections including bladder infection, his central line/ port is infected and will come out, and bacterial infections in his blood --staph being one. He is now on powerful antibodies. Most sadly, the loss of vision in his left eye is likely permanent. Cale came to be with us all day Tuesday as the medical specialists had continued to sort through their findings and begin to arrive at partial answers as to what was happening to Ron. Physically, he was markedly stronger and had better balance on Tuesday. His voice was stronger. He was more talkative and although confusion continued to be an issue, he had improved. I will update later in the day after we know more. Please send positive thoughts and prayers our way. Love, Jan

I love the new car and am starting to learn its computer features. Ron and I looked at the instructional DVD this morning; now he is napping until lunch. The weekend is his time to catch up physically from all of the therapy he has done during the week. Mainly he will just walk some and do some free weights with me today and tomorrow. I am going to take him to the apartment Sunday for several hours; he can get a sense of leaving rehab, and I can clean the apartment. With leaving early in the morning and returning late each day, I have some catching up to do. Ron continues to make slow, steady progress. In addition to physical and OT therapies, we are working on some memory activities. He feels like his short term memory is not what it used to be. You also lose a reliable sense of time and date when in rehab. Heartland is a good rehab center; everyone is so caring, friendly, and we have now established rapport with several nurses and aides. Ron's BMT doctor and I communicate through email. He has an appointment with him Monday, May 7. Following is our tentative schedule for May: May 6- visit to our Ann Arbor apartment May 7- appointment with Dr. Mag at Mott Hospital- BMT Clinic May 8- update status with Heartland Rehab staff May 9-15 continue rehabilitation at Heartland May 15-16 discharge to apartment in AA May 17-20 trip to Gilead Lake for a long weekend May 20- return to AA apartment in the late afternoon; finish packing everything by May 23 May 21- appointment with Dr. Mag May 23- Symptom Management Clinic appointment, full pulmonary function test, eye appointment; move to Gilead Lake late afternoon May 24- Ron- teeth cleaning; dental appt. in Coldwater with regular dentist I hope this plan works!!! Love, Ron & Jan

May 1, 2012: Heartland Health Care Center

Ron has now been living at a rehabilitation center for almost four weeks, and after our care conference today, he will be staying at least two more weeks. The goals are to get him to a point that he can exercise independently with support from an in-home therapist and also that he is mobile enough that we can manage in the apartment and at home on our own. He is improving. He has gained some weight and his blood pressure is more stable when he sits and stands. His bloodwork remains mostly stable with some improvements. He does have some days that are better than others in terms of strength and clear headedness. We continue to support the Ann Arbor area economy. We bought a Ford Edge Select Ecoboost this week. My Explorer is a 2003, and our Ford XLT F150 is not easy for Ron to get in and out of...sounded like a good reason to buy a new car to me!! When I figure out a couple technology glitches that I am facing with my laptop, I will post a picture. I have a lot to learn with My Touch Ford, Sirius, something sync etc. I enjoy learning new technology. So here we are continuing to live in AA. It will soon be 9 months...more than that when we get home if the next 2-3 weeks go well. Thanks for your support as we continue on this lengthy journey. Beating acute myeloid leukemia has been a challenge, but Ron continues to be in remission. There was no way to even begin to imagine all that he would have to endure. He is amazingly accepting of his circumstances. Love to all, Ron & Jan

April 28, 2012: Day 248 after transplant

Progress is slower than we had hoped, but it is progress. On Tuesday there will be a group care meeting, so by then we should have a better idea of when Ron will be discharged from the Heartland Health Care Center to our Ann Arbor appointment. It would not be safe yet for him to come back to the apartment. He gets 2-3 hours of physical therapy here each day, so actually, it will be better for him to stay longer. He does not have any appointments at U of M next week, so he can concentrate on getting better here.

April 23, 2012: Day 243 after transplant

Grinding. It seems that the order for progress is physical therapy. Ron has shown improvement since his admittance at Heartland Health Care Center. Although his blood pressure readings continue to drop significantly when standing, there is improvement, and a new medication is not the answer. Building muscle is the answer. Ron will be staying here at least two more weeks, so he can have intensive physical therapy. His bloodwork is okay by transplant standards. The platelets will be the last to recover.
Grinding.

New Week: April 23, 2012

Today is doctor day. We will leave for the BMT Clinic in Mott Hospital at about 1:00. Today Ron sees his primary doc, Dr. Magenau. This includes PA Tim Higgins, and nurse Maria. On Wednesday he will see his symptom management doc, Dr. Urba. His therapy will continue here at Heartland Health Care Center for about two more weeks. The session that he misses this afternoon will be made up on the weekend. He will have one session this morning before lunch. His blood pressure drops have improved but still a problem. He is definitely stronger, and we are anxious to see what his bloodwork from this morning shows.
Overall, the food is quite good here. We only had to make runs twice to buy something else. Yesterday his weight was the same as 2 weeks ago. 151.2 lbs. We are happy when it stays out of the 140s.
Thanks for your continued support in so many ways: checking the blog, sending positive thoughts and prayers our way, a note to Ron, a newspaper clipping, a text or email, etc. Yes, he is still grinding. We still believe there will be a good outcome after this long recovery.
Love, Ron & Jan

Therapy Update: April 20, 2012

The amount of therapy Ron receives at Heartland is excellent. The same two therapists work with him each day. Except for the first weekend (Easter weekend), we do things we have learned and he walks on the weekend to at least maintain his level of mobility. The weekend is also a time to recuperate after a full week of hard work. His fall was 3 weeks ago...one week in the hospital and 2 weeks of rehabilitation behind him and probably 2 more weeks at Heartland Health Care Center. If he stays stable medically too, we should be able to go home by mid May. My new target date: May 10.

A New Week: Monday, April 16, 2012

We have lived in Ann Arbor for 8 months now, and it is unlikely that we will be moving home in April. Ron's blood pressure's variance is not as dramatic as it was, and we can see progress in other ways, too, but more work is ahead of him before he can become independent in doing his exercise. He will have clinic check-ups next week, but this week the concentration is on his therapy.
All four kids' visits over the past three weeks were a boost for me, and it is important to them to see how their Dad is doing. This rehab center is 15 years old and has been kept quite nice. The grounds and landscaping are pretty, and spring is definitely in full swing. Once again our yard at home is being mowed by brother- in- law, George. I hope that I will be able to take that over before too many more weeks. I can hardly wait to put my energy into gardening and yard work. I am staying patient though, and we will wait until it is safe to go home.

10th day of rehab: Heartland of Ann Arbor

Rehabilitation is helping Ron. He is motivated and has the desire to get better. Although his blood pressures continue to vary significantly from lying down to standing, it is not as large a difference. They continue to tell us as he gains muscle especially in his legs, his muscle contractions when standing and walking will constrict the blood vessels in his legs and stabilize the BP.
It has been comforting and helpful to have all of the kids visiting over the last 3 weeks. Now the siblings will be visiting us as we move ahead. I haven't asked, but Ron will probably have 2 more weeks in rehabilitation. The main goals are becoming independent in exercise and stabilizing blood pressure.
Your continued support in many ways has been so meaningful to us. Ron usually reads his texts on his phone but has not begun to return texts yet. He is being weaned off a medication that causes tremors, and the therapist is working on hand strength. He cannot press the buttons on the remote control to change channels and volume freely, and it is physically difficult for him to text and write. I do read his texts to him and also the emails that have been sent to my address: janhover46@gmail.com. Again thanks for your continued support.
Love, Ron & Jan

Heartland Health Care Center: Ann Arbor, MI

Monday-Tuesday, April 9-10, 2012

Snow fell today on the lovely pink dogwood blossoms. It was breezy and spit snow for most of the day. Ron had had a low grade fever for a couple days, so they are not going to give him another roommate. It makes a HUGE difference to be able to have the divider curtains pulled back and the window in view. The room looks at least 3x larger.
The doctor's appointment went well yesterday. I had to get up early to get myself ready, drive here, get Ron ready, and be at the hospital by 8:00. His bloodwork was good, no red flags, or levels lower than what they had expected. They took his bloood pressure lying, sitting, and standing and saw firsthand how it drops dramatically when on his feet. The therapy here at Heartland Health Care Center will help build muscle to counteract this. It won't happen overnight, but he seems to slowly be gaining a little strength. The plan is for them to work their magic here and not go back to the clinic for two weeks. He has about 2.5 hours of therapy spread out through the day. His U of M clinic appointments have been rescheduled, so he doesn't have to leave here the rest of this week or next.

From Journey to Saga...

As this ride continues, I think it is appropriate to call it a saga. Ron's roomie has had to return to the hospital, so now Ron is in a room alone, and I have pulled back the curtain so we can see the pink dogwoods in bloom outside the window. Happy Easter!
Ron's side of the room has the advantage of being next to the bathroom, but it truly is close to the size of our Ford F-150 truck. There is a nice wingback chair for me, and I also sit on his walker. He has a very small TV on a retractable arm. The staff here has been very caring and kind.
Tomorrow I will take Ron for a blood draw and doc appt at the Bone Marrow Transplant Clinic in new Mott Hospital...our usual destination for appointments. He will see his BMT doc, Dr. Mag, who has been great. I hope we are back by noon for lunch here and physical therapy in the afternoon. Niccole and Cale are coming tomorrow. Then Matt is coming later in the week. Andrew was here 2 weeks ago.
I hope so much that we will be able to go home May 1. There are many medical issues that have been worked through or resolved. He has not had high dose steroids for some time now, the BK and CMV viruses are gone, his electrolytes are acceptable, as are his other bloodcounts. His blood cells made by the new bone marrow run low, but he does not need transfusions. His skin does not have active graft versus host disease, and although he has GVHD in his mouth, it has not caused lesions, just dry mouth. Now he needs to rebuild muscle strength, so his blood pressures stay more stable in different positions. (orthostatic hypotension) He was so weak, that he could not pull himself higher in the bed but needed to be moved up in his bed using a loose sheet under him. He could not sit for very long on the edge of the bed without tipping over, and he continues to not be able to walk without assistance even when using the walker, so there is a good deal of therapy that needs to be done. It feels like we are in the right place.

April 5-6, 2012

I have to admit that taking Ron to a rehabilitation center was a culture shock for me. Before his arrival, I had focused on the benefit that I knew he would receive with intense therapy, and I had not prepared myself for what Heartland and the other patients would look like when we arrived. Then he doesn't have a private room like he has been used to at U of M. That being said, our adjustment followed rather quickly with the warm, caring staff here. I just have to initiate more information-sharing at Heartland where at the hospital, that was done automatically by the nurses, PAs, NPs, and docs.
Ron had 2.5 hours of therapy yesterday. We can already see some improvement!

Heartland Health Care Center: April 3-4

I can't imagine how much more difficult it would be to communicate with everyone if we didn't have the IPad. I am grateful for it everyday. We have a Verizon 5-spot for our wifi service. The hospital and Heartland both have in-house wifi, but our own Verizon works consistently better. It is about the size of a hand-warmer so very easy to carry with us.
My sister, Anne, and George came to Ann Arbor to bring our mail from home, so they stayed to help move Ron to Heartland. It seemed overwhelming to both of us, and I felt like I was was moving him into a nursing home. I had to ask to have a review of meds from the nurse and also requested to talk to the director of this unit because I had many questions, and they did not initiate any "orientation" but have responded very quickly when I request something, so that has just been part of the learning curve. Now today at the top of my agenda is to make sure that the meds are totally correct in every way. I can assume that responsibility if there are any issues. I plan to stay all day, maybe going out for short periods of time, and I am not allowed to spend the night. I feel so much better about this place than yesterday when he first got here.
Ron is not in a private room, so I have started to look into that possibility. It is a nice family with the roomie. Coincidentally, their son who is here has sons named Joey and Jack...much older though than our Joey and Jack.
Ron's mailing address will continue to be our apartment address:
1455 Oak Valley Drive. Apt. 103
Ann Arbor, MI. 48108