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.