Winter returns...

Looking ahead to this week---Ron will have appointments 4 of the 5 days. He has physical therapy Monday and Friday, and we will be in Ann Arbor Tuesday and Wednesday. On Tuesday he sees his neurologist, and Wednesday he sees his transplant doctor and has a transfusion of zometa to strengthen his bones.
The symptoms of his last flare up are resolving, but he continues to have a cough which could last for awhile yet, and his arms continue to be blotchy where his skin is affected by cGVHD. Other than his arms, his skin outbreak is healing well. Best of all, his strength is returning. He continues to use a cane to walk safely; it not only helps him with balance, but he also uses it to test surface height especially on curbs, stairs, and doorways. Ron continues to learn how to compensate for his vision loss. Now that the new golf season has started, he realizes that he cannot track the path of the golf ball on TV. Again he adjusts. It is good to see that he continues to take notes on things, makes detailed lists, and puts all activities on a calendar. He is also re-reading one of his favorite books.
Winter has returned after a few warm days. We watched the ice go out on the lake, but it should return again this week.
Be safe on your winter travels.
Love, Ron & Jan

Sad Duck with Migrating Geese

Hundreds of migrating Canada Geese settle at Gilead Lake each day. They roost on the ice and swim where there is open water. Sad Duck enjoys all of the company but will be sad again when the lake is totally frozen over, and the geese have gone.

Ron's bloodwork in Coldwater today showed that he continues to improve. He also had a physical therapy session. It tires him, but he enjoys getting back at the physical activity, and it gives me a chance to run quick errands while we are in town. I checked (Ron's: My U of M Health Report online) the results of last week's bloodwork at U of M. The IGG test was very near normal which shows his immunity is very much improved since its 303 level prior to the IVIG infusion. Cautiously optimistic that this train is turned around.
Love,
Ron & Jan

Grinding...16 & 1/2 months since transplant

Hope all of you are enjoying being on the other side of the holidays. Even I feel like we are returning to our schedule. Ron has a dental appointment and two physical therapy sessions this week. He will also have a weekly bloodtest on Tuesday and phone call with his doc to check progress. It seems like he will have a good progress report. His skin is healing, and he continues to cough, but it is not as rough as it was. He does not run a fever.
The current goal is to be well enough to travel to Florida in February to Matt's promotion to Lieutenant Colonel. Ron cannot drive, so it will take us longer to travel. We are driving to avoid being locked into dates and restrictions in packing. I always pack one bag with his medications and medical information. Obviously,we have to stay flexible. We are fortunate to not have other commitments that restrict our decisions.
I did not make any resolutions although we do have some projects in mind, and the seed catalogs have started to arrive in the mail. It is important for both of us to continue to set goals.
Love and wishes to you for a happy, healthy new year,
Ron & Jan

Two Days in Ann Arbor

Ron's doctor had added yesterday's appointment when Ron's skin outbreak continued to progress even with a higher dose of his med for inflammation. Doc Mag said that we're not going to dink around any longer with a small increase in meds. Also, his white blood count had returned to above normal since our return home from his hospitalization December 17-19. After bloodwork here in AA yesterday and his examination, Doctor Mag ordered two infusions "to turn this train around.". His white blood count had continued to rise, and the bloodtest for the BK virus had increased (measured in "copies"--48,000 for you medical background readers). The two infusions are medrol for skin inflammation and cidofovir for the virus. He had a chest xray which did not show pneumonia. Ron is also on a second antibiotic for two weeks for bronchitis-like symptoms. His prednisone was increased from 10 mg daily to 40mg for a week.

They also suspected he was slightly dehydrated which contributed to a 12 pound weight loss since 12 December. He drank A LOT yesterday afternoon and evening and weighed +2 pounds when weighed today. So as a favorite nurse, Kathy, told me when Ron was in the hospital last month: this is the life of a bone marrow transplant survivor. Flare -ups, infections, and bumps in the road are to be expected but will continue to be more spread out, and improvement will continue.

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