One Card Done!!

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

A New Season

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

Back to Grinding...

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

Abby Hover- Soccer Player

Tis the Season...

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

The Boys and the Girls on Thanksgiving 2013

Back Home in Michigan

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

Hanging in...

We have been home a week+ from the hospital and made a one day trip back to AA for a check up. Progress is slow, but Ron is moving in the right direction. So yes, we are thankful as the holiday season is quickly approaching. Some lighter moments will be greatly appreciated!
Our new granddaughter will be arriving in about two months. I love thinking about having a new baby in the family! I am hoping that we will be able to see more of all our grandchildren in the next year.
Hope everyone is planning a happy thanksgiving celebration and ready to just enjoy a break from the fall routine...whatever that might be for you.

Remembering GG: Ron's Mother

www.patience-montgomery.com

Esther Ann Hover
GG was a strong and sometimes (okay, more than sometimes) feisty woman who started living on her own in high school. She never lost an appreciation for family and her life experiences. Having been a child during the Great Depression, she was frugal: I can remember seeing her put a small amount of spilled salt back in the salt shaker. As Andrew recently said, she made a real impression on everyone. (Abby frequently asks about her and remembers her in her prayers.) I think she made an impression on Abby and others because she was so real.

You can read her obituary on the above link.

Settling In at HOME

There's no place like home. (Especially your own bed!) eleven nights away from home; well, that wasn't planned. When Ron is in the hospital, I stay in his hospital room which meant 7 nights in a recliner and a couch-- not too bad actually. I want to feel completely informed about his care and issues, and he requires help with many things.
This round of infection has kicked his butt. It is more complicated than his January pneumonia which was MRSA staph. In addition to MRSA, He now has a second bacteria and fungal infection in his lungs. The treatment plan is underway, and we will get through this too. Like January, I anticipate some permanent change.
A visiting nurse came today, and Ron will soon start physical therapy at home. He will transition to out patient PT in December after he regains some strength and the infection clears up. He has lost about 15 pounds.
I have napped today, done laundry, and organized the medications schedule. There were several changes, so I am using a spreadsheet again to chart.
Blue was so happy to see us! He is on my lap now as I write. Relatives who will take care of your cat and clean the litter box are something special.

Going Home Tomorrow!

Things are moving into place, so we can go home tomorrow afternoon. Ron is not receiving any IV meds as of this afternoon. We will need to return next week, so he can have bloodwork and a clinic appointment, and we are still hopeful that we can travel to Virginia for Thanksgiving.
At this time including the appointments scheduled for December, Ron will have had 90 days of medical appointments and care of various types at U of M Hospitals in 2013. As Ron would say, "that's a big Jimmy T. OH, MY!"
Tomorrow morning I will go to the Cancer Center Pharmacy to pick up new meds and refills, and Dr. Mag is taking over in-patient service, so that will be good to have him as Ron's discharge doc. We hope to be home by late afternoon, and Gary (my brother)and Vicki will be there to help us unload the car and settle in at home. Rick (Ron's brother) and Tammy have made arrangements for GG's memorial service which won't be held until January 18, 2014. Her obituary will be in the Coldwater and Jackson, MI (Citizen Patriot) newspapers soon.
Love,
Ron & Jan

11-12-13

Ron continues to improve, and tomorrow they will start changing his IV medications to pill form. Dr. Couriel didn't want us to have to do IV antibiotics at home, so Ron will likely be discharged on Friday. That way they can observe him a couple more days, and the home plan for a visiting nurse and at home physical therapy can be in place. The cardiologist has discharged him from their service, and the heart monitor is gone. He has a very slight heart rhythm irregularity that barely falls out of the normal range, but it was aggravated by the respiratory distress. No intervention is needed.

Ron's mother passed away today. She has been living in an adult foster home for four months following 3 falls, hospitalization, and rehab center for a month. It was not unexpected but still hard to hear. Ron and I had visited her last Wednesday morning from AA before Ron's doctor appointment that day. I am so glad that we made the trip.

Testing Testing

This was a busy day. Ron does not require breathing treatments during the night, so fewer sleep interruptions was (were?)appreciated. Ron started the day by a trip to the Cardiovascular Center for an echo ultrasound test of his heart. The bloodwork that might indicate a heart related event was negative. He is still on the heart monitor, but there is not a significant change from normal results. The first EKGs showed irregularities that were aggravated by respiratory distress.

Now he is just on an inhaler as needed. Twice a day seems to be what is needed. He is not on oxygen any more. His BP is normal again, so overall, he has responded very well and quickly to treatment.

His lungs are fighting infection. His staph infection in his lungs is MRSA --same as in January, and this time in addition to that, he has pseudomonas and an aspergillus fungal infection.

The PT came today to access his physical therapy needs. He will need to work on strength again especially in hips and thighs and also work on balance. He will resume ECP when his infection is under control, so we proceed and have a feel for the direction we are headed. Controlling a chronic illness is now a shift in thought for me although that has been the case for quite some time.

Tracy, his PA from the first rounds of chemotherapy in 2010, first remission, and chemo during relapse which led up to the bone marrow transplant, visited today. So much has happened in the past 2 1/2 years, so many changes in Ron. It was a tearful visit for me.

Bloodtests are being done to check the absorption levels of the antibiotics and anti fungal to see if the dosage is correct for him. This can vary person to person. The treatment plan needs to be in place before we can go home, and the aim is still Wednesday. The testing is wrapping up...I think.

Love and thanks for the prayers, good wishes, and positive thoughts that I feel coming our way.
Jan

Sunday - 4th day in hospital

We have more information today. Lab tests have identified two bacteria in Ron's lungs-- staph aureus which could be MRSA again and pseudomonas. He was already on IV antibiotics that will cover them, but they did up the dose. Today a doc from cardiology came to examine Ron and discuss some abnormality in his EKGs. He has now had 4 EKGs done, and the change is not severe but needs to be investigated more. He is on a heart monitor to gather more information and might have an echo test tomorrow. Dr. Couriel has been in to see Ron Saturday and Sunday, and he will be on service for in-patients this week too.
We walked in the hallway today, and he does feel better. We have enjoyed some football and our naps too. --still catching up from our all-nighter on Thursday. I sleep in Ron's room..not too bad actually. We think this is the 14th hospitalization since his diagnosis of AML in April 2010. All of his rounds of chemotherapy required hospital stays; then there was the transplant itself and many complications. Over 200 nights in the hospital now.
We had a nice visit from Cale today. He can give his sibs his perspective of things here in Ann Arbor. :-)
Love,
Ron & Jan

Making Progress

Ron is much better than his first night in the hospital. He has always responded well to treatment. He is on a wide range of antibiotics until the bacteria in his lungs is identified. It could take 2 weeks to identify the fungus. They are also checking for viral issues. His need for supplemental oxygen is almost resolved already.
Besides the lung infection, it is believed that he had a bad reaction to dapsone that was started 6 weeks ago during his gvhd flare-up. It altered the iron in his red blood cells so they could not carry enough oxygen. As a result, in the past month his heart rate has been over 100 and he has had high blood pressure which was a new issue. Also, at appointments, the oxygen level was registering low until he would take several deep breaths. Following treatment with methylene blue (he is peeing Michigan blue now), this condition -methemoglobinemia- is reversing and so are the symptoms. I add this medical gibberish for the ones of you who have medical background! To check that oxygen level in his blood they use a gizmo that attaches to the end of a finger, and they also have done arterial blood gases draws which are not a walk in the park. The oxygen carrying red blood cells have reverted back to normal iron and his other vitals are back to a more normal range.
During the first night when they nearly admitted him to ICU, his BP was 184/100, his respirations 40 per minute, his heart rate 115, and he was on 80% oxygen. When they ask about intubation and CPR wishes, it gets scary. It truly was amazing how quickly his condition improved as the treatments started. The bronch has provided good information but the procedure itself exacerbated the issues.
Ron is in an isolation room on the ward where BMT patients are admitted to Mott Hospital (U of M). His BMT Clinic is just down the hall. Because of precautions I cannot go in the common areas in the inpatient area. That includes the laundry and lounge facilities, so Ron's tech is doing our laundry today for us. Bonus. We had packed to go home on Thursday, so we needed some things laundered. However, I knew someday that it would pay off to always pack an excessive amount of underwear for both of us.

Too many details; I know, but this blog is also a record of events for me. :-)

Pneumonia

Ron has been hospitalized for pneumonia. He saw a pulmonary doctor on Monday because the CT scan showed probable fungal infection. She ordered a bronch scope on Thursday. He has also had another head MRI and light therapy. During the prep for the bronch, I was told that he probably would not be able to go home because he was requiring oxygen. His need for more oxygen as the evening progressed and a fever were symptoms of his pneumonia, but they also think he had a medication interaction that caused his blood to carry less oxygen. So he was breathing rapidly and required quite a bit of oxygen during the night. He is much better this morning and afternoon, and his oxygen requirement is about half of what it was. He will be hospitalized into next week. He has bacterial growth in his lungs as well as fungal, so his medications are being adjusted to cover those needs. His MRI showed no progression in his brain lesions. Yeah!
Being in the hospital is exhausting!! It didn't help that we were awake and stressed during most of the night.
Getting great care,
Ron & Jan

Really?? November?

October seemed to pass quickly, and this morning after 3.5 inches of rain and stout winds over 2 days, it was amazing how much it looked and felt like November. It was a dramatic shift.
Ron and I made a day trip to U of M clinic in Canton for CT scans of his sinuses and lungs. The results show probable fungal infection in his lungs, so the IV pole went back in the closet, and he was changed to an anti fungal that will give better coverage. After a few days of that and several episodes of hallucinations, the IV pole has returned, and I will resume the infusion of the anti fungal that has less side effects. He realized the episodes were hallucinations and did not find them fearful. (Music and TV playing when his eyes were closed that would stop when he opened his eyes and people in our bedroom who would disappear when he opened his eyes but felt very real) he had one nightmare about a tsunami.
We will spend some time in AA this week for an evaluation of his lungs and resuming ECP every other week.

First Snow: October 24, 2013

A Bit Weary...

We have had a stretch of busy days, and I am ready to relax and catch up on some things the next 3 days. I am a home-body anyway, so this will be enjoyable for me. We traveled to Ann Arbor Monday and Tuesday of this week. Ron had appointments with his transplant doc and also the doc who is the BMT head doc. After Ron had a flare up of his graft versus host disease a month ago, Dr. Mag wanted him to see Dr.Couriel. He felt Ron needs to be checked for lung issues and also another MRI to see if there are any changes in his brain lesions. We will travel to U of M Canton, MI for chest and sinus CT scans on Monday. That will be a day trip. Dr. Couriel believes that he had a flare as a result of starting ECP light treatments only once a month in September, so Ron will resume biweekly trips to Ann Arbor this month.
Another change will be with his preventative anti-fungal medication. He is having this medication in IV infusion, so we have the IV pole out of the closet again. He had his first IV at the clinic on Tuesday, and a visiting nurse came yesterday to watch me give the first at home infusion. This is a daily infusion that takes about an hour. The liquid antifungal aggravates his cognition and coordination issues. He will also receive physical therapy at home for awhile and then perhaps transition to PT back at the facility that we used last winter.
Yes, winter looms, so we have had our flu shots and are hoping for no hospitalizations this winter. Next week we will spend 3 days in Ann Arbor for ECP treatments and the MRI of his head. I am assuming that he will then be able to take less steroids. It is such a balancing act, and less ECP tipped the scale which caused the GVHD flare up. Probably.
It is a relief that gardening is coming to year's end. I have indoor projects planned, and we have already had a killing frost and snow flurries, and I even put on my long underwear today! Ha!
Love to all friends and family as our journey is now a saga!
Ron and Jan

Mid-October

We are home from our trip up north. We love visiting the Leelanau Peninsula in the fall. Our first year of retirement in 2008 was the first fall trip north, and it was such a perfect trip...both great weather and great health. We returned to our favorite rock hunting beach, orchard, bakery, restaurants, and casino. We had a good trip in spite of our current challenges, and I am truly grateful that we could go. You see a lot more when you do all of the driving because your eyes are always open! Ha! We were in vacation mode, so it was a relaxing time. The colors were beautiful with lots of reds and gold but not enhanced by sunshine this year. We stayed at two places, and I hauled our things in rainfall both times. We brought home some pretty rocks and several with Petosky fossils. A good trip for us.

We have two days in Ann Arbor this week. Ron will see his transplant doc, Dr. Magenau and also the main doc of the clinic who will also evaluate his graft versus host disease. I don't think that they will taper the steroids this week because I think changes will be made with his anti fungal med and anti pneumonia med; due to side effects. Usually, not too many things are changed at the same time, so the cause and effect can be understood. Ron's quirky behaviors have increased in the last two weeks. I have always been a patient person, but my patience is fine tuned now!

On our trip to Ann Arbor, we will visit Ron's mother who is increasingly becoming weaker. Hospice is supporting her caregiver with services. So much to think about and work through mentally and emotionally.

We had company today! Cale's family came for the day, and we had a relaxing time. We enjoyed the Buckeyes game, picked the only 3 pumpkins, a few tomatoes, apples, and snake gourds and threw a whole bunch of rocks into the lake. We also read a few books and baked cookies. And Jack read a book to me! Joey had visited a one room school museum on a field trip, so I showed him his great great grandparents McGuffey readers and slate, and he showed me his cross country medal. Allison loves to be read to. Good medicine for Grammy...so much value in the simple pleasures and still considering myself a lucky person.

Home Sweet Home on Gilead Lake

Pushing Into Fall

As I read my last entry, I see that events played out as anticipated. The bonus was that the fall weather was glorious this week. It was 78 degrees today when we took out the docks. Because I have memories of spitting snow on spring and fall "dock days", today's sunny, warm weather was great. The down side was knowing that it would have been a great day for a pontoon ride! BUT so glad that this fall ritual is done.
Ron had his two ECP light treatments for the month of October on Wednesday and Thursday. It was good seeing our ECP nurse friends again. Ron takes ear plugs because we talk and laugh during his treatments. I also bounce ideas and concerns off them...great support for me. His steroid dose was tapered, so we are grinding along in the right direction again. His new antibiotic seems to have affected his liver enzymes so something new to follow and learn about. I am also spot checking his glucose level for a few days. The steroids cause it to be higher but not at a level where he has needed insulin yet. Have to keep on my toes!
We are really in a pretty good spot and looking forward to sightseeing in Michigan this week and starting to think about our trip to Virginia in November.
Love to all,
Ron & Jan

Weekly Update

For our anniversary, we went to Caruso's, an Italian restaurant near home. It was a nice outing for us. Wow! And now it is October; that seems amazing to me. We did make our one day trip to Ann Arbor for Ron's immunity infusion. From check in to leaving, it takes about 6 hours. This is an infusion of antibodies from over 1000 people who have donated blood. IVIG.
We visited Ron's mother on our way home. She is 92 and lives in a foster home that provides nursing home care in an amazing, caring family setting. She is failing quickly now; she has not had a major health event. Basically, she is just wearing out. Her home is about 10 minutes from Rick and Tammy's barber shop in the Airport Road Meijer store in Jackson, MI. (Rick is Ron's brother.)
Ron's med changes have controlled his GVHD but also have aggravated his coordination and personality changes, but it is manageable. His prednisone dose should be tapered this week. We will be in Ann Arbor two days for ECP, the light treatments and check by the doc or PA.
The pontoon will go into storage this week. The weather just became autumn-like today. The last six weeks have been beautiful. Could the skies be any bluer than they are in September? Now we are enjoying the day to day changes to fall colors. Next weekend two of our Amish friends are going to come and help take out both Hover docks. I have been doing fall gardening at a very lesiurely pace.
We have our reservations made for our trip north to the Leelanau Peninsula. Both of us are looking forward to visiting some favorite places in that area. Ron is not allowed to drive, and I have become "the driver", and he is the navigator...one of our many role reversals!

For better for worse...

..in sickness and in health, to love and cherish.. I am thinking of our wedding vows because today is our 43rd wedding anniversary. A little trivia: Ron was almost 17, and I was 18 years old when we had our first date. He was a senior in high school, and I was a sophomore in college, and we worked in the same Indiana Tollroad restaurant. A lot of time and shared life experiences have passed. We have had a blessed life.
Ron thanks me every day for taking care of him, and I remind him that I will always be here to take care of him. We vowed to do so, but it is out of much more than a sense of duty.
I am feeling mushy on our anniversary.
I have been holding off writing this entry until after yesterday's trip to Ann Arbor. I knew that Ron's skin was showing signs of graft versus host disease again, so I knew that some changes in meds would result. It is considered "a flare up", and liver enzymes were elevated more too, so it is involved as well which has been the case in the past flares. His lungs sounded a little crackly, so he had a chest X-ray too. So in the present his prednisone dosage is increased which means he has less immunity, so he has new meds for his lungs and is going to go back on the anti fungal that they stopped in July. I am hopeful that his cognitive changes will remain stable. The doctor's office has called today, and he needs an infusion to boost immunity. We will travel back to AA next week. He is also going to be seen again by the BMT head doc in regard to his chronic GVHD. Everything is a balancing act between controlling his GVHD (the fight between his own body and his new bone marrow-new immune system) and opportunity for infections. That is why he continues to take steroids, 2 antibiotics, antiviral, antifungal, and meds especially for his lungs. The meds for his lungs are similar to COPD regimen.
If he isn't able to tolerate the antifungal, I will give him IVs at home again. This would be the same as we did the first 8 months after the transplant when we lived in our AA apartment. I would use his port; I don't have to do IV pokes. Okay, I was going to keep this concise, and I am rambling. I am having our Edge repaired (computer issues)so am sitting at the dealership. I am rambling.
Ron played some golf with George this morning after rolls and juice with Troxells and Griffiths, and now he is napping. We have plans to go out for an anniversary dinner this evening.
Love to all of you. Thanks for the messages, emails, visits, prayers, positive thoughts, texts, etc. everything helps us cope.
Love, Ron and Jan

Living in the Moment

I have decided to live in the moment and stop googling for information that just scares me when we do not yet know what is causing Ron's cognitive decline. His spinal fluid and blood were tested for quite a variety of viruses and other organisms, and no answer was found. The MRI definitely did show reason for mental status changes, but the cause has not yet been determined. The screening by the neurologist and the full work up by the neuropsychology clinic have identified and measured areas of deficit. This correlates with the areas of the brain that are affected. It won't be the first time that I have asked myself or others "why?" and not found an answer.

We continue to enjoy family, beautiful end of summer weather in Michigan, and our home on Gilead Lake. We are in the process of planning an October trip up north for 3 days to visit some of our favorite places and see fall colors. We do not return to AA until September 25. I am accepting that this is not an urgent health matter that requires urgent treatment. Unless there is a change, I am going to live in the moment.

Ron and I are enjoying college and pro football and of course, the Detroit Tigers. His memory is good, and he enjoys reminiscing about many memories, near and far but has some short term memory issues. He continues to sleep a lot, usually at the least 14 hours each day. He is often quiet for long periods of time when he is awake and sits with his eyes closed. He still reads the sports pages in his newspapers. He has difficulty synthesizing information to make good judgments and plans...called executive function. He has difficulty with numbers and spatial orientation, and he has weakness in his legs and balance issues. He has no pain, is usually mellow, and does not really comprehend or care that his abilities have changed. I think this is good, and he still has a sense of humor.

His chronic GVHD (rejection) is being treated with photopheresis light treatments that will now be monthly. (after 12 weekly two day treatments followed by 6 months of two day biweekly treatments) He receives a steroid infusion boost once a month and is on a low dose of prednisone daily. The GVHD continues to affect his skin, especially his back. He has medications to treat his lungs which are also affected. Even though his treatments are monthly starting this 9th month, he will keep his Neostar central line which is a port, so he does not have to have pokes for lab work or treatments. ECP would require two IVs each time.

Well, that was probably a lot more information than you really wanted to hear! I had to cut myself off; I was on a roll. I am thankful that we still enjoy each other's company and can get out and do things. Ron enjoys eating out, and there was almost a whole year when we couldn't do that. So we move forward and try hard not to fear the future.

Living in the moment,
Ron and Jan

More "no news"

...or maybe I should say no answers. We saw Ron's PA briefly today, and he told us that all tests that they have run so far are negative. So there is no definitive answer yet into what has caused the brain abnormalities revealed on the MRI. We do not know at this time if his mental and coordination issues will be reversible, stable, or progressive. All of the unknown is difficult. If I can make a list, have definite things I can read and study, have procedures to mark on my calendar, etc., I feel much more in control. I don't know what is next. We are not scheduled to see Dr. Mag in clinic again until September 25.
I did spend an hour with the social worker for the clinic. We have known her over 3 years now as she has frequently touched base with us during Ron's many hospitalizations for chemotherapy, GVHD, and infections. She is gentle, has great insight, and suggestions.
I will let you know what's next when I know.

No News is Good News?

I do not yet have any results of Ron's testing last week at U of M. He had a urinalysis, blood work, and spinal tap on Thursday. Things at home remain about the same, but the waiting is difficult.
Jan

Here we are!

Thanks to everyone for your good wishes and continued support in so many ways!
Love, Ron & Jan

BG, AA, BG

Ron really had a good birthday. We had dinner which included chocolate cake and ice cream with Cale's family. He opened gifts back at our BG Hampton room afterwards. Staying at the Hampton gives him the quiet and sleep time that he needs now. We have earned so many Hampton points that the 3 nights are free. I am looking forward to friends coming to visit me Friday. This day was full too with travel to AA for blood tests and his spinal tap which was done under sedation and with X-ray. Thank you, Dr. Mag for ordering it that way; Ron doesn't even remember it. He is spending hours lying flat but is allowed to eat at a table, then go back to bed. I didn't tell them it would be in a restaurant with friends, daughter-in-law Lisa's parents. Besides, lisa's dad is a doctor, and he can advise us if something develops. Some things you just feel like you gotta do, and this dinner was something both of us wanted to do. We are eating in BG.
Nice to be back in Bowling Green for a few nights. Still feels like home.

A Special Day

It was a special day. Ron and I drove to Centreville, MI where the golf group from BG was playing on the first day of their Fall Trip. Ron used to play regularly with this group when we lived in BG, and he also made occasional trips to play with them early in our retirement. It was bittersweet to see the group in action with Ron on the sidelines, but it was a very good outing/reunion for us. Jim Treeger had a golf cart reserved for us to follow the group for 3 holes...then we were ready to head back home.
Ron's spinal tap (lumbar puncture) is scheduled for Thursday morning. We will travel to AA in the morning and hope to be back on the road by 1:00. We are having dinner with friends in BG Thursday evening.

Ron's MRI and ECP #50

Sometimes it is just harder to write a post for our blog. This is one of those times.

We were in Ann Arbor 3 days last week. The first day was for Ron's neurology follow-up appointments which included an MRI. Facing unknown territory was scary for me. Ron had his light therapy treatments Wednesday and Thursday, so the same 5 nurses in this treatment area have become a support group and a professional and personal sounding board for my concerns. As Ron has his treatment which lasts overall about two hours, I talk to the nurses. They have a variety of personalities but all are so nurturing to both of us. We share our family pictures and stories as well as issues regarding care of aging parents and of course, Ron's recovery. Thursday's treatment was #50, so we have spent a lot of time together. They urged me to talk to Ron's PA this week and to contact the bone marrow transplant social worker who has frequently made contact with us during Ron's hospitalizations. She also gave us the information for finding an apartment when we moved to Ann Arbor in August 2011. I follow their suggestions.

The results of Tuesday's MRI were sent to the neurologist who then discussed them with Dr. Mag. It would appear from the MRI that Ron has a brain infection. His symptoms which have been slowly progressing since his hospitalization for staph pneumonia in January-February, are consistent with this probable diagnosis. Ron will have a spinal tap some time this week to confirm this diagnosis and/or find which virus is causing the infection. Then a course of action can be determined. We are still planning to make our BG trip Wednesday (Ron's 65th birthday) through Saturday. The current plan is to schedule the spinal tap Thursday, which will be a side trip to AA, and return to BG afterwards. The BMT Clinic called me twice Friday to put the plans into motion. I asked them to please not schedule it on his birthday.

Ron is somewhat like himself part of the time with odd behaviors part of the time. He walks with his cane, but his movements are slow and not a smooth gait. He is very fatigued and sleeps 14-16 hours most days or sits with his eyes closed. He doesn't really seem to fully process what is going on medically. He is still very interested in the Tigers MLB and excited about the start of college and professional football. ...Going to relax and catch up on a few things around the yard, gardens, and house this weekend.

Love to all,
Ron & Jan

Two Happy Birthdays for Ron

I can keep track of Ron's appointments, medications,test results and also contact any of Ron's doctors through the U of M Patient Portal. It is a convenient, helpful system which we have used a lot. Last Friday I sent a message to Ron's neurologist, and he responded that same day. On Monday I sent him a summary sheet of Ron's complications from the transplant and the more recent changes that have occurred since his hospitalization for staph pneumonia in January-February 2013. It was sobering to see all of that information on one piece of paper. He has been through hell but amazingly, considers to see his glass as half full. His office then called on Wednesday and told us that Ron could be seen on Thursday afternoon. It just felt like something we had to do, so we changed some other plans and made a day trip to Ann Arbor yesterday and spent almost 2 hours with the neurologist who had seen him in January. It was good that he had a baseline for comparison of Ron's cognitive and motor skills. Ron did have more difficulty with the tests and tasks yesterday, so the next step is a full work-up with the Neuropsychology Clinic at U of M and an MRI. Amazingly, the stars aligned, and we were able to schedule both appointments for the coming Tuesday. For the clinic appointment, someone had just canceled for that Tuesday appointment which we filled, or the next open appointment was in December.
We are in scary territory, but maybe we will have some answers and a course of treatment soon. This offered a sense of relief in some ways, and we actually felt light-hearted on the way home.

If you follow the blog and would like to send a birthday card to Ron, his 65th birthday is September 4. We are planning a short trip to Bowling Green, Ohio, to celebrate with Cale's family on his birthday. We also pass the two year anniversary of his bone marrow transplant tomorrow.

Much love to all of you and thank you for your support in many ways. We are both grateful for your positive thoughts, good wishes, and prayers. This tumultuous journey started almost 3 1/2 years ago with his first diagnosis of acute myeloid leukemia.

Hanging in there,
Ron and Jan

Update after Ann Arbor..

We were in Ann Arbor 3 days this week. Ron has made some improvement with the med change, and I feel like that particular med did aggravate whatever is causing his recovery to stall, but things are not "all better". So the next step is an appointment with his neurologist who Ron last saw in January. Maybe he will be able to provide us with some answers and/or change his medications if necessary.
We also met with the dentist, and she recommended 8 extractions, so we go back to the oral surgeon in September. The amount of decay, its proximity to the bone, and broken teeth are the reason for oral surgery. It is hard to know when/what to put him through. Although the chemo played a part in this, Dr. Mag says the decay is more due to chronic GVHD in his mouth which causes dry mouth.
So we move on, and Ron will taper ECP to once a month in September. That was good news! He is being scheduled to see his BMT doc every 6 weeks as we move past the two year anniversary of the transplant August 24. So hoping that the neurologist can provide direction with addressing the cognitive issues.
Both of us are enjoying the cooler weather, and we were out on the pontoon today. I feel like I have a better handle on taking care of this property. Things seemed a little overwhelming for awhile during the summer. I am cleaning out things and simplifying, and George continues to faithfully mow the yard for us. We have had twin fawns and a doe out by our garden. Sadly, "sad duck" has disappeared from the lake. We had enjoyed him for several years.

Two Entries Today....

I have shown restraint to not put our most joyful news of the year in the blog. I can wait no longer!! Ron and I will be blessed with our ninth grandchild in January. Andrew and Lisa are expecting a sibling for Abby. Next month they will learn if the baby is a boy or girl, breaking our tie of 4 granddaughters and 4 grandsons. The first 8 grandchildren arrived in 7 years, so this baby seems extra special since it will arrive 5 1/2 years after Allison, our youngest, was born. Big sister Abby will be 6 1/2 by then.
Woo!! Hoo!!
Congratulations to Andrew, Lisa, and Abby!! Baby Hover will be born in Landstuhl, Germany where Andy and Cale were born when we were stationed in Baumholder, Germany.
Love,
Pa & Grammy

Moving on...

My project of cleaning out this house and garage has taken on a life of its own. I am making good progress, but it is a huge undertaking. I have spent the last few days going through tubs of pictures and other momentos. Ron and I have both loved photography, so we have overdone it, and I can't understand now why we didn't throw bad pictures away consistently over the years. It has been fun reminiscing and feeling once again thankful for all the experiences we have shared as a family. Because Ron and I are both sentimental, we have collected a huge amount of stuff. That being said, I have 5 more garbage bags of stuff ready for trash pick up Friday. I can almost hear the kids cheering.

Ron definitely is doing better than the "low week" when he fell; also at that time, I took a hard look at the confusion he was experiencing and his behavioral changes. This was 3 weeks ago, and he is definitely better since not taking Noxafil which is an anti fungal med. He continues to take 2 antibiotics, an anti viral, low dose of steroids, vitamins and minerals, and meds to improve lung function. He only takes meds twice a day, and his high blood sugar is nearly resolved. Six more weeks and we should be able to taper our number of trips to AA. By winter I am so hopeful that monthly appointments will be adequate. August 24 will be the two year anniversary of the transplant.

Back to School! How did that time of year roll around so quickly?! This is a busy day for daughter in law, Lisa. She and Abby are moving on post while Andrew is TDY in Miami, FL. They have housing on Vogelweh for those Army friends who are familiar with the Landstuhl, Germany area. I am so glad that they will be living on post. Hope you are enjoying the end of summer weeks and looking forward to the beautiful fall season. This cooler weather has me thinking of fall colors! Ron and I both love autumn.

Moving On...

Things have continued to moderate which is very acceptable to me. I think that I am prepared for accepting that there are just going to be more instances of "not Ron" behavior. Yet at the same time I am trying to not worry about what that might be because there is no predicting! Life continues to be an adventure. Because Ron's fuzzy blanket slips on the leather recliner, he duct taped it to the chair. Because he has bumped countertop corners which tear his skin, he has scotch taped countertop corners. He puts return address labels on furniture, his canes,items of clothing, baseball hats, etc. At the same time, most of his behavior is totally like it used to be, so as I said there's no predicting.
Yesterday we went to Battle Creek, Michigan, to get his new military ID. Medicare will become his primary health insurance September 1, and Tricare his secondary. So hoping that this will be a seamless change!
I am enjoying this very unlike cool August weather. It makes me wonder about the upcoming winter. I do continue to enjoy my gardening, and Mother Nature has cooperated by sending frequent rain this summer, so I have not needed to water much at all. Everything is still green! The biggest problem has been moles burroughing through the yard.
Love to all of you. Thanks for keeping in touch and following Ron's journey.

Update from Ann Arbor

I wanted to squeeze in one more update in July. U of M Hospitals continue to impress me. Tuesday's visit was with an oral surgeon in the main hospital. Actually two oral surgeons---very thorough, caring, and professional--spent almost two hours with us. Ron is now a patient in U of M Hospital Denistry. A group decision was made that it is too aggressive at this point to extract all teeth, so we return in two weeks to decide a course of action-- which teeth now, partial dentures, etc. Ron needs to make some lifestyle changes regarding candy bars and gummy bears. I also must make continual reminders regarding brushing. I learned a lot about dentures in a short time.

Regarding Ron's behavioral changes, he is less agitated and frustrated after being off one of his meds for 6 days. That is an encouraging sign that there could be more improvement. During the next two weeks I will log issues to see if time of day is a factor, and he is not allowed to resume driving. When we see Dr. Mag in two weeks, this discussion will continue. The next test would be an MRI. Chronic graft versus host disease is a challenging result of his transplant which has kept him leukemia-free. GVHD affects his lungs, skin, eyes and liver, and treatment for it has compromised his immunity. Overall, his bloodwork continues to be very good in the BMT world. By no means easy, but coping.

Bump in the Road

I have been thinking about this blog entry for a few days now. We are in a rough spot again. Ron has shown an increasing pattern of confusion over the last several weeks. I think I was in denial for awhile...just thinking he was "off" for some unknown reason [which is still unknown] and that his physical progress had stalled, but now it is evident that Ron has lost ground mentally and physically. He has fallen twice in July, and he has had personality changes as well as cognitive issues. He had a CT scan on Wednesday, and it did not show evidence that would be related to these new problems.
At this point, the doc has stopped one of his medications to see if it is the culprit, and he will probably be scheduled for a full neurological evaluation. We travel to Ann Arbor this week, and we will have the opportunity to discuss these new issues with his doc. I don't know if this will impact his oral surgery. I don't know what to expect in the weeks to come. His confusion causes frustration and anger, but a lot of the time he doesn't seem to be any different than he had been. Bump in the road.

A Boost in Immunity & the Donor's Country Revealed!

Ron had his infusion of antibodies yesterday to help boost his immunity. (IVIG). We were at the BMT Infusion area in the adult BMT Clinic from 11:00-5:00. It is worth it to have some insurance against infection. We are in Ann Arbor for his ECP light therapy treatments too. His immunity level is measured by a blood test that is frequently ordered at the same time his bi-weekly blood tests are drawn. The infusion of antibodies is now following a pattern of "too low IGG" every two months. This could recover somewhat as his other products of his new bone marrow have. I keep an eye on the trends of various blood tests through a U of M patient portal online. Ron's appointment schedule and messages between the doc and me are two other ways we use the portal.
Ron will see an oral surgeon here at U of M on July 30. He will be evaluated, and decisions will be made regarding the extraction of his teeth and dentures. All of the chemo and other drugs have ruined his teeth. His regular dentist said it would be a pointless drain of time and money to continue to repair his teeth. There is always the concern regarding any type of infection.
We have found out that Ron's donor is from Sweden!! We have the paperwork to submit for exchange of information if the donor is interested. Contact can be made if both parties agree and on varying degrees of release of information to each other. We were so sure that we had it figured out that the donor was from Germany. I think our first step might be to give him the blog address. In spite of all of Ron's complications, he has never said that he wishes he hadn't had the transplant...just the opposite, we both remain so grateful to the donor. He was only one of 3 matches in the world wide registry. There were no matches in the United States. After googling Bone Marrow Transplant and Sweden, I have been reading about Stockholm Care and the Tobias Registry. Their registry was initiated in 1992. When I returned to Ron's infusion room to tell him about Sweden, he had candy out for a snack. I thought it was red Swedish fish at first glance!! Upon looking more closely, it was red gummy dinosaurs; now that would have been just too weird!

Two Scheduled Days in AA

Ron's appointments in Ann Arbor continue to go well. We will see his transplant doctor before leaving today, so we have spent time on 7th floor, 8th floor, and are now waiting on 7th floor again. The doc is over scheduled after being home for two weeks with a new baby! I have a new toy. We bought a MacBook and have also updated our IPad, so we move ahead technology-wise too.

We have also downloaded an app called Viber on my phone which allows me to text and call Andy and Lisa at no charge. They are now living in Germany and have found out that they will be moving into on-post housing in August. Great news for them!! With our updated 4G hotspot and new MacBook, I hope we will be able to Skype successfully. Our feed in the past was inadequate for holding a reception on the old computer.
We spend the 4th at Wall Lake at my sister's for a family gathering. Her 3 daughters and families will all be there. Kate, the kids, Niccole and Cole will be with us, too. My brother and his extended family will be there too, so it will be good food, good times, and the weather should cooperate as well. We travel to BG for a "4th of July" gathering on the 6th with Cale, Jess, grandkids, and Jess's family. We should be pooped by Sunday. Ha!

Matt continues to work on an investigation which has taken him to Ft. Bragg, Quantico, California,and Afghanistan. He is back in the States but has not been able to come to Michigan yet.

...still waiting on the doc
Love,
Ron & Jan

Catching a Break...

Daughter-in-law Kate says we are due. We have had an eventful 24 hours-- weather related that is. The day was cruising along and busy with cleaning along with my two regular Amish ladies, delivery of our new television, shopping for clothes with Ron, and picking up a young Amish couple who said they would help us put in the dock at Wee Cottage for Kate and kids. We ordered pizza for pick up from the Draft Horse and were all eating together at our house when it appeared our chance of severe thunderstorms was indeed developing quickly. Soon it was pouring, thunder and lightning. We couldn't see across the road or the lake. Kate pulled up severe weather warnings with south Branch County, where Gilead Lake is, mentioned specifically. Cautioned to move to the safe area or lowest level of your home, immediately we headed down to our lower level which is a walk out on the hill that leads to the lake. Oh, yes, I forgot to mention that by now it was dark, and our power had gone out.

We had a few flashlights in tow and settled in on the couches downstairs. We cuddled up in blankets, and the train set and toys were close by for entertainment in the dark. Anna moved out to the toy area and when returning to the L-shaped couch area, she jumped; water splashed, and Henry the beagle started lapping a drink of water from the carpet. We knew we were going to have a problem. Will flashed his light over to the wall with two window wells, and there was a waterfall down the wall from one of the windows. We threw several beach towels, blankets, and bedspreads on the floor. It was still storming and pouring rain. We headed up the stairs, and the ceiling was dripping water by the laundry room. I went outside to trench a ditch away from the house. It was lightning too much to use my pole to free the clogs in the eaves troughs. We had over 5 inches of rain in about 3 hours-- have had over another inch today.

George, Anne, and I used 3 wet vacs on the carpet the next morning (today) and hauled all the wet linens outside, they did hold quite a bit of water. Things are drying nicely now, and I have had to use my pole on the downspouts 3 times today to free the leaves, etc. that keep damming the downspouts when it rains.

I am not even go into the issues with getting the new TV to work. It worked at installation yesterday but this morning ( and I am trying to see the humor in this) our ONLY channel that would come in was ESPN. We thought we had had trouble with the old TV but have now switched out DVRs and TVs, so it appears the cable is the problem. The satellite feed is problem free with the other two TVs in other rooms. Direct TV is sending a service person Friday. The diagnostic testing with a representative by phone was interesting.

Ron put things in perspective for me today when he said, "well, Jan, no one was hurt.". I can only imagine how upset he would have been in days past. He didn't even go downstairs to look at the clean up process. It really didn't bother him at all. And I felt like I was ready to move to a condo!

Love to all,
Jan

Moving Ahead...

Esther/GG update: she is now in a beautiful rehab facility in Jackson, Michigan and still feisty. When she has recovered from her hospitalization --regaining strength-- she will be living in an assisted living setting that has additional self care services available. Her previous assisted living apartment is not a safe choice for her any more, and she now needs more services than that setting offers. Not easy.

Ron is having his two ECP treatments at Mott Hospital in AA. In fact, he is almost done with the second one as I am blogging. We stayed at our regular Hampton last night. Ryan, the desk manager, told me that he sees us more than his own family! They make us feel at home.

Ron's bloodtests remain to be good. This week he switched to heparin based fluid for the ECP treatments because his platelets have been over 100 for 3 months. This is another step forward. 122 this week, and 140 starts the normal range. We saw Tim, his PA. We are cruisin' along. The season of family being at Gilead Lake is beginning. That is a special time of the year for us. Hopefully, we will be able to travel and visit them this fall and winter. Ron did some mowing on the rider this week and played golf. It isn't the golf of years past, but it is good therapy for him. George told me that the cursing at bad shots is about like it used to be.

Love from Ron & Jan to you!!

A Couple New Challenges

Last week a nurse was talking to us, and she asked if we can relax, or are we always waiting for the next shoe to drop. Basically, we do not stay fearful but guarded to some degree. Still when a new challenge surfaces, we are taken aback, then regroup, and try to figure out what to do. We have two new challenges. After a routine dental cleaning, xrays, and exam, we were advised that no more restorative work should be done. (would just be throwing money away) Now an evaluation process has started, and decisions will be made as to how proactive to be when extracting teeth. Ron's Bone Marrow Transplant doc- Dr. Magenau- has referred him to an oral surgeon at U of M. So we are still in the information gathering stage.
Our second new challenge is that Ron's mother is hospitalized after having two falls. She didn't injure herself, but she is weak and not well. She is hospitalized in Jackson, Michigan near Rick, Ron's brother. Esther had not had a hospital stay since the early 70s for a procedure which is now probably an outpatient procedure. She will require a period of rehab at the least, and at this point, there are many more questions than answers. Rick and his wife, Tammy, shoulder the responsibility for her care. They truly are awesome, and Esther is challenging at times. I think if you live to be 92, being feisty is a given. She still gets fired up about politics, and when the paramedics asked her who the president is, she said, You know: Stupid. You are always a little bit nervous about what she might say!
We are getting excited about the kids starting their summer visits. Kate and the kids are on their way to Michigan from Florida today! Her mother is traveling with them, so it is nice to have some help. I do know that their frogs got loose in the van, and somehow Anna had a fishing lure stuck in her clothes and blanket. Never a dull moment!
Hope all of you are doing okay with your challenges. I know that we aren't the only ones with bumps in the road. It is a part of life and helps you appreciate the calmer times even more.
Love,
Ron & Jan

Good News out of Ann Arbor

We have returned home after two days in Ann Arbor where Ron had bloodtests and two ECP treatments. That will be our routine every other week for four more months. Yeah!!---no more lovenox belly shots..my least favorite nurse duty the past seven MONTHS! Also, Ron will not have any more monthly steroid infusions. He does continue to have prednisone daily: 10mg. They plan to lower this dosage after another month. His symptoms of graft versus host disease are being controlled with the current treatment. His weight is holding steady in the 170s, and he requires very little insulin to control his blood sugar. They also expect the insulin to be totally phased out. His new bone marrow continues to improve in function. White blood cells and hemoglobin are in a normal range, and platelets continue to inch up closer to a normal level.
We are looking forward to summer lake activities and visits from family. Life is good.

All About Jan Day...

Today was the longest time that I have been away from Ron during the day for over two years. (When he lived in rehab for 5 weeks, I wasn't allowed to spend the nights with him.) I left home to have my car serviced at 9:30 this morning after doing the morning meds routine. Felt a little like a teenager taking off in the car solo! Ha! I did a little shopping and picked up some things we needed.


BUT THE BIG NEWS IS...Ron played golf today! It had been over two years since he last played. Brother-in-law George and a friend picked him up at 1:00 to play 9 holes at Cedar Lake Golf Course. It made him feel so good to accomplish that.

5 Years of Retirement

There really is something about anniversaries. Ron and I went to BG to see Cale's family and attend the Bowling Green Education Association retirement recognition. It was a glimpse back at what our lives used to be, and there was a lot of emotion in the room as several friends were retiring, and the association has had a lot of conflict with contract settlement and non-passage of a recent levy which will result in more changes within the schools. I have been more emotional recently. I looked back at our pictures from 2008, and I felt drawn into a grieving process as I needed to accept where Ron is in his recovery. It is also hard for me knowing that Andrew, Lisa, and Abby are moving to Germany for 3 years. They plan to come home each year. I feel like I am pulling myself up at this point and ready to move on. When Ron and I are out of a crisis in his recovery, there is more time to think rather than just get through each day. That's when you have to face feelings head on.

Cruisin'

Ron is continuing to cruise...so much better than "the grind". We continue to be grateful for the extent of Ron's recovery from the transplant and his significant complications. I cannot say that accepting the changes is totally a walk in the park, but when I think back to what we have been through, I truly am grateful to be able to resume somewhat of a regular life. Our new regular.
So what does that mean? Ron will probably not be able to do city,freeway, or any multi-lane driving again. No more napping or reading a book for me when we are on a trip. I have adjusted to doing all of the driving. Ron does drive the pontoon, so that is a treat for me. He cannot make the quick decisions or complicated problem-solving that more advanced tasks require. ( and of course, the loss of vision in his left eye impacts driving.)This is frustrating for him at times, but both of us have adjusted to moving more slowly and deliberately. I don't think he has reached the endpoint of his recovery. He makes daily lists of tasks to accomplish and wishes his short term memory was better. We certainly are able to enjoy life even though the dynamics have changed.
Ron's diabetes induced by high steroid doses when he had pneumonia in January is nearly resolved. His sweet tooth is amazing; he has gummy bears stashed everywhere! I am counting the days to the next appointment in the hopes the daily "belly shots" will be over! It will then be 7 months of this daily routine. The insulin pens make it easy to give those shots, but the lovenox belly injections easily bruise and sting. Taking care of the central line-- dressings and flushes is not a big deal. So we are now two years out from the beginning of the 5,6,& 7th rounds of chemotherapy which brought him to his second remission.
Not sure how I decided to ramble on about "things", but it was probably therapeutic for me. I have been enjoying my gardening and being outside. The deck project is about half done. We had it power washed, bleached, sanded, and now it is ready to stain. It looks great already. A man who lives nearby is doing all of the work.
We are looking forward to a trip to Bowling Green tomorrow. It is the retirement celebration for some of our teacher friends, and it will be great to see Cale's family. It is the 5 year anniversary of our retirement.
Love to all,
Ron & Jan

A Planned Trip HAPPENED!!!

We have returned to Gilead Lake from Germantown, Maryland, where Andrew, Lisa, and Abby will live for about another month. Then they are moving to Landstuhl, Germany where Andy will work at Landstuhl Medical Center Hospital where he and Cale were born.
We were able to attend Andrew's graduation which was held at Constitution Hall in Washington, D.C. He has completed his Master of Arts degree as a Perioperative Nurse Specialist. Such a proud day as he crossed the stage and received his degree which included a hooding ceremony. He had also received two awards from the university in an earlier ceremony, and those were mentioned. In addition to Lisa, Abby, Pa, and I attending the graduation, Niccole and Cole had traveled to Andy's from Fredericksburg, Virginia. Cole has a cast on his shin and foot due to a hairline fracture of his heel growth plate, so he was learning how to navigate on crutches. it was a great weekend and trip. We stayed at a Hampton one night each way since I must do all of the driving. After less than 24 hours at home, we have two days in Ann Arbor for Ron's treatments.
Ron's bloodwork was very similar to two weeks ago which is good. He weighed 177 pounds which is now up 35 pounds from his lowest weight during recovery. He weighed a few pounds over 200 when he had his transplant. This is a really good weight for him, and his blood pressure is good too. We have continued to taper his insulin medication as his glucose levels are on the road to normal levels. It has now been a year since we moved back home after living 9.5 months in Ann Arbor. During this year, Ron had 3 return hospitalizations, and we have had an additional 20+ weeks of return overnight appointments...amazing what can seem a normal routine. Now we are in a holding pattern of two day appointments every other week. This will probably continue at least 4 more months, but Ron is continuing to make good progress since his light therapy ECP treatments started in January.
Have a wonderful Memorial Day weekend as you remember and honor all veterans.
Love,
Ron & Jan

May Happenings in Pictures

Sad Duck has resumed his summer life with his Canada Geese family that includes him yearly. Then he is so sad in the fall when they fly away that he cries and cries out on the lake. He is not able to fly.

The swans are staying on the lake longer this spring. There is one who swims alone, and I caught him in flight as we rounded a cove on one of our first pontoon rides this week.

I had to include the picture of Ron, Rick, and GG/Esther/MOM Hover. Ron and Rick must have learned to wear "power red" from her!

Post #345...amazing!!

I plan to load a couple pictures below but will have to work from the computer. It feels like summer today, and we are enjoying the weather and not being in AA this week. Things are going smoothly, and by Ron's next doctor appointment, I think he may be able to drop a couple meds. His steroid induced diabetes is resolving; he developed diabetes in January when he had pneumonia. It would be great if he could switch to a pill and not require daily injections. (that would be good for both of us.) He usually only has one insulin injection a day now..down from four.
Ron has been on daily injections for bloodclots in his leg; this complication developed in November and requires six months of injections. We will soon be at the six month benchmark. No injections would be a notable change in our daily routine.
I am anxious to see next week's bloodwork and am hoping the trend to more normals continues. In the bone marrow transplant world, his bloodtest results are good.
We traveled to Spring Arbor to celebrate Mother's Day with Ron's 92 year old mother who resides in assisted living. Ron's brother and wife, Rick and Tammy, came too, and both of us brought brunch food. Yummy! Esther struggles with everyday living tasks and has some confusion. She still insists on wearing high heels (pumps) and has strong opinions about politics and wanting to be more independent.
Hope you are enjoying this great warm weather and looking forward to summer.
Love, Ron & Jan

Ann Arbor: Two Days

We drove to AA this morning for appointments that started at 9:30. I prefer coming the night before. I worry about oversleeping or a sluggish morning, and as a result, I don't sleep well. Ron had bloodwork (it looked good)and his ECP light treatment. We both crashed back at the Hampton. Ron is not cleared to drive, so I continue to be "our driver".
Tomorrow Ron will meet with Tim, his Bone Marrow Transplant PA. He also has an appointment with his eye surgeon who did the cataract surgery on his right eye. It made a HUGE difference in his vision. The total vision loss in his left eye is irreversible. Thirdly, he has another ECP treatment which takes about 2.5 hours. Then we will drive home. Our new dock was put in today, so we are anxious to see it and have the pontoon delivered. Our first ride is usually with us wrapped up in blankets, and I hear that it will be cooler this weekend.
We are cruising along, and improvement is an ongoing process. The neurologist had told us that improvements could continue for another year or more, so we celebrate each small step and continue to be thankful for the overall improvements in the past months.
Love to all,
Ron & Jan

Thanks!

We have noticed the donations made on Cale's Relay for Life website (an earlier blog entry) and will continue to follow it. Thanks. It has now been over 3 years since Ron's first diagnosis of AML leukemia and almost 2 years since his relapse which resulted in more chemotherapy to bring him back to remission, so he could have a bone marrow transplant in August 2011. As you may also know, he had testicular cancer in 1981. He is a survivor!! This is in great part due to past and continuing research. Ron himself has agreed to be a part of several continuing research projects, and periodically has blood drawn and bone marrow biopsies for this purpose.

Ducks in a Row...

Actually, they are swans in a row! They are just passing through. Swans don't nest on this lake, and it is a special treat to see them on the lake or hear their whooshing wings when they are in flight. The cottage on the right is "Wee Cottage" where the Matt Hovers spend part of their summer.

Reporting good news...

We have returned from a scheduled "routine" three day trip to Ann Arbor. Ron had his two Extracorporeal Photopheresis treatments which treat his chronic graft versus host disease. To shorten: ECP light treatments for cGVHD. The medicine and UV light therapy treats part of his blood outside his body; then it is re-infused. The modified white blood cells are less reactive to his skin. At some point, hopefully, the white blood cells from his new bone marrow will become less combative. There has all ready been improvement. His treatments are every other week now, and his prednisone was tapered at the beginning of the month. He still takes antibiotics, anti fungal, and antiviral medicine daily because of his compromised immune system.
In addition to ECP Ron also had a CT scan of his chest, and his lungs are nearly healed from his staph pneumonia in January-February. This was great news of course! He had his monthly pentamadine breathing treatment while we were there, and on the first day he had an IVIG infusion which boosts his immunity. This infusion is a process that takes about 4 hours. It is an infusion of antibodies collected from about 1,000 donors.

We are still amazed with the improvement in vision in his right eye since his cataract surgery. He will see his eye doctor again during our next trip to AA.
Things are going well.
Love,
Ron & Jan

A Message from Cale Hover

First, I want to thank everyone who has viewed this blog. I know it has meant a great deal to my parents to know how many people took the time to get updates on my dad's condition.  I know that all of the blog post replies, emails, text messages, notes, and phone calls have helped my parents make it through such a challenging time.

I'm honoring my parents by participating in our local Relay for Life on May 17. I hope that you might consider making a donation to support American Cancer Society's efforts to provide a world with less cancer and more birthdays. My dad is living proof that ACS is succeeding in this goal. 

Thanks for your consideration and continued support.

http://main.acsevents.org/goto/choverbg

-Cale

Rain, rain, and more rain...

9 inches of rain in the last 10 days by our rain gauge, and the lake makes me a believer! Our spring fed lake is filling up after a significant lower level two weeks ago. It is a good thing! I am ready to get back out there and continue spring gardening. It is very windy and cool again to the point of some snow flurries, so I will break out the long underwear again.
Ron continues to gain strength slowly, and we enjoy walking outside when weather permits. This "no Ann Arbor" week has been relaxing. We shopped for new carpet, and have just enjoyed many consecutive days at home. Next week we will be in AA for 3 days.
So, not grinding but continuing to cruise like a slow pontoon boat ride. And we will actually be doing that before too many more weeks!!
Love,
Ron & Jan

Smooth sailing...

Bloodwork, doc appointment, and ECP went smoothly yesterday. After Ron's treatment today, we will head back to Gilead Lake and hope our warmer weather returns by the end of the weekend. Rain, highs in the 40s, and wind put the brakes on spring!
Ron's bloodcounts continue to inch closer to normal ranges. They are very good in the "bone marrow transplant world". His glucose readings are less radical, and he is requiring less insulin. When his glucose is high, there is good reason--he does love his candy, carbs, and cookies. We are discovering good sugarless substitutions. He feels stronger and has had me bring his golf clubs out of the downstairs and has even hit balls in the yard. He also pulled out one of his fishing poles. He has not golfed or fished for two years but is ready to start enjoying these activities again. Ron is very accepting of his physical limitations, so I think he will be able to enjoy golfing even though it will be on a different level.
Ron has also planned a trip, making reservations, and an itinerary for our trip to Germantown, Maryland for Andrew's graduation. We are looking forward to that in May.
Thanks for your continued support as you hang in there with us on this journey.
Love, Ron & Jan

Moving Forward

Recovery from cataract surgery is going smoothly. Ron's vision in his right eye is greatly improved. He can read the basketball scores on the tv now...and that's without his glasses!! We enjoyed the final four games tonight with the Griffiths. Happy Birthday to Uncle George, too!!! Ron will have an eye exam in 5 weeks and get his new glasses prescription. It would seem that the ECP treatments are working well for him, too, so it is good to be moving ahead. Although we didn't get our full week without AA, it is great having the eye procedure done and with such good results. Next week's trip to AA should be routine with a doctor visit and two ECP treatments--only one night at the Hampton.
I am getting out in the yard for some spring clean-up and early work in flower beds. I love seeing the day to day progression of spring, and this week will bring some rain and warmer temps, so things should really start to pop.
Happy Spring. Hope you are feeling renewed energy and hope as I am.
Love, Jan

Surgery went smoothly..

I have to admit that I was nervous! Over the past 3 years disappointing news has been dished out enough that I am a little gun shy. I feel like I am guardedly optimistic when a new situation is encountered, so I couldn't help but prepare myself on some level to be ready for less than good news after the cataract surgery. But not to worry, it went very well!! They had told us that Ron's eye would be covered, and other patients had opaque covers, so we did not expect Ron to be able to see until tomorrow, but his covering is clear plastic. Tonight we spend relaxing in the Hampton Inn room, and tomorrow we will see the eye surgeon (who is Ron's regular eye doc here). Then it is back to Spring Break for a week. It feels good to relax and let the stress go.
Love, Ron & Jan

Spring Break Cut Short...

...but not an emergency. We had planned on this being our full week at home, but when I called Ron's eye doctor on Thursday to schedule his cataract surgery, scheduling took on a life of its own. After follow up phone calls from U of M Kellogg Eye Center later that day and Friday, arrangements had been made for his surgery tomorrow, April 2. So we traveled to Ann Arbor this morning for pre operative history, physical, bloodwork, and lens measurement. All of that went well this afternoon, and the actual surgery is scheduled for 12:30 Tuesday. His eye will be covered after the surgery, so he will not be able to see at all for about 24 hours. We don't anticipate any complications.
Congrats to U of M for its representation of the Big Ten in the Final Four NCAA Basketball Tournament. GO BLUE!!

Spring Break Has Begun!!

Our "work" in 2013 has been to fight graft versus host disease with ECP treatments two days every week. Now Ron will transition to two treatments every other week, so we are "on break" until April 10. Ron is doing very well, and the treatments have helped his skin. His balance and walking have improved, and his gait is more natural looking. He is cautious as he walks because of depth perception issues with vision only in his right eye, and the cataract in the right eye affects his vision too. We don't have any more information yet regarding scheduling of his cataract surgery.
It feels like we are in a good place, and both of us continue to be optimistic for a good 2013.

No Drama This Week

And that is a very good thing! ECP treatments went smoothly as did Ron's check up with his transplant doctor. There are no medication changes except for minor adjustments with insulin to help control glucose. Steroids will be tapered at the end of the month. The goal continues to be control of graft versus host disease with ECP light therapy instead of high dosage steroids which have many side effects. After next week's treatments we will have a week that we do not have to make an overnight trip to Ann Arbor. That will be a treat for us! --only our second time in 2013.
What's next?? On April 1 Ron's prednisone will be tapered from 15 to 10 mg daily. Ron is cleared for cataract surgery, and arrangements for that will be scheduled soon. He will have a CT scan of his lungs in April. In April ECP will be two treatments every other week instead of weekly. During ECP 48 ounces of Ron's blood is spun in a centrifuge to separate white blood cells and some plasma. It is then treated with a drug that is exposed to UV light to activate the medication. The WBC/plasma altered collection is then returned to the body. Additional fluid is also infused with it. Ron has a central line with 3 lumens(a Neostar) that was surgically implanted in early February, so this two plus hour treatment is totally painless. He usually naps during most of the process as he rests in a recliner.
So...no drama this week. And now I am ready for a nap in my recliner--stress free.

Could we please have a little spring weather??

Now that would be good for the soul! Great being back home but getting ready to enjoy looking at water instead of a huge field of ice on the lake. It shouldn't be too many more weeks. We are enjoying college basket ball-- especially the Big Ten. We are Spartan and Buckeye fans with attachments also to the Hoosiers and U of M. That must sound very twisted!
So what about the eye issue? We went to ECP on Thursday, and the nurses and our PA Tim were concerned about the bleeding in the eye, so Ron was not able to have his treatment. Instead we went back to the Kellogg Eye Center to have the eye rechecked. They best described it as a big bruise on the eye, and it should clear in a week or two like a bruise on your skin. I was thankful to have it rechecked and appreciated the conservative approach to cancel ECP. To me it appeared to be more raised by that evening but the same this morning. This bruise is on the eye which does not have vision.
We have been stopping in Spring Arbor on our trips home from Ann Arbor to have lunch with Ron's mother who is 92. She lives in assisted living close to Ron's brother. Rick is her go-to man for groceries, appointments, coordination of services for her, frequent visits, and those quick visits when needed to fix her tv remote, lift chair, etc. They include her in their holiday festivities. Priceless.
I am very much hoping that next week's appointments are uneventful. It will be good to touch base with the doc regarding insulin dosing and this week's events. It feels like we are back on track today.

Settling down now...

Just another day in Ann Arbor putting Jan through the wringer.. ECP was at 11:00, so Ron had his preliminary bloodwork at 9:30. I like this schedule because we can move at a non-stressful pace at the Hampton. (very helpful when I have snow to remove from the car AGAIN) Ron's eye appointment was at 1:45, so I brought him lunch during the last part of ECP. So far so good.

I was glad that Ron was having his eyes checked because his high glucose at some point everyday affects his vision. The health of his right eye is even more important since he has irreversible complete loss of vision in his left eye. Mainly, I am thinking that I want the eye doc to reinforce how important it is to avoid foods that cause his glucose to go too high. The exam begins with the eye chart which is electronically projected, but even so, the E is still the largest letter. With his good eye, Ron cannot make out any of the letters until the solitary large E is projected. I had given him insulin at lunch as well as his Lantus after breakfast, but I know this is a time ..almost 2 hours after a meal when the glucose is high. The exam continued-- which includes a tear duct test, etc. For this, they attach small strips of paper to measure tear production.

Without trying to sound dramatic,it was gut wrenching for me. Over an hour passes before the main eye doc comes in, and he rechecks, and there is significant change since September's exam but not as bad on the recheck as an hour earlier. He would need a new prescription, but his vision is fluctuating, so we are in a holding pattern to change his glasses. The doc also tells us that he has a cataract, and in addition to the high glucose, that would appear to be the reason his nearsightedness has become worse. He can read okay. He will need cataract surgery when cleared by Dr. Mag. Personally, I think he needs a much higher platelet count, and I will insist it be done by a doc who does a lot of them every week.
To add to the stress, when the person who did the paper strip test removed the strip, it broke a capillary, and now as he puts it, his left eye looks like something you might want on Halloween. By this time, I am so relieved that he is not going totally blind that I find his comment very funny and break into hysterical laughter. His entire eye is bulging red, but as long as he can close his eye, I won't call the doc on call. Actually, something similar happened awhile back, and as long as he can close his eye, we can wait. It also helps knowing that we will be back in the clinic tomorrow morning. Indeed, through the wringer today.

Pure Michigan

Sad Duck and friend swimming with Canada Geese in open water...ice fishermen in the background!

Extracorporeal Photopheresis = ECP

The ECP treatments appear to be making a positive difference in Ron's GVHD. His skin is much improved, and he no longer has mouth sores. Graft versus host disease usually is apparent in skin changes first. Ron has had skin issues of varying degree from almost the first week after his transplant 18+ months ago. Deciding to commit to ECP treatment has been a significant time commitment. We have only had one week in 2013 that we have not had overnight stays in Ann Arbor. We will follow this same pattern for 3 more weeks! Then the treatments will be every other week starting in April. It will be a treat to just stay home for more than a 5 day stretch.
We continue to make adjustments to cope with high glucose readings. I never would have imagined that I could give so many injections!! The doc tells us that the levels should moderate as the steroids are reduced. I hope so. It helps that I like the diet changes. I suggested he try no sugary treats for 5 days to see how it affects his levels, so he is doing that and photocopied a little "Jan's 5 Day No Sugar Plan" sign that he has posted all over the house. --even one on my bathroom mirror! A nice side effect would be that I might lose a pound or two as time passes. Ron is slowly gaining weight-- just short of 160 pounds on our home scale.
Seeing some very early signs of the seasons changing: open water along the shore with Canada geese and sad duck swimming together!! AND ice fisherman still out farther fishing; as Niccole asked, "Isn't that dangerous?" (Ron & Marilyn, I have a great picture of this just down from your Michigan home.)The daffodils came up under the snow, and I saw one crocus blooming.
Love to all--
Thanks for hanging in there with your support and positive thoughts; it means a lot to us.
Ron & Jan

A Good Report...

Ron had a good doctor appointment this morning. He is recovering well from his pneumonia at the beginning of February. Last week blood was drawn to test for several viruses-- all were negative. His platelets and white blood counts had been trending down, but that has reversed itself as well, so only good news. He continues to get stronger and is riding his stationary bike again. He might return to out-patient PT when our weekly trips to Ann Arbor are done.
We were concerned about yesterday's snowstorm so left early for AA. It did not snow here, but we had a few inches at home. It will be nice to start having temps above freezing...even the 40s. Spring fever!!

In Like a Lion...

It is winter in Michigan! The sustained freezing temps and snow cover are as much as we have had all winter. Go figure. Ron's brother came and cut down a red oak that was broken, had an odd shape, and leaned towards where we dock the pontoon boat in the summer. It opens up our view and greatly relieves my mind to have it cut. It was amazingly solid though for the most part. I was a little sore from hauling and piling up the small stuff. It was a large tree..amazing energy and work by Rick.
Our big event yesterday was having our new Amish-made bed frame delivered. We love it. Today we did our big grocery shopping at Meijer in Coldwater and went out for lunch. Now I am pretty much just melted into my recliner. I am sure there will be some college basketball in my near future..or maybe a nap before the Michigan State vs Michigan game.
Ron continues to gain strength after his hospitalization for pneumonia. It was a scary time with the need for oxygen, two days in ICU, and lung cultures showing that his lung infection was MRSA staph. Amazing where you can sleep when there is no way you're leaving the hospital! The ECP light therapy is in its 4th week, and its purpose is to balance the immunity, so the donor cells do not cause so much havoc with GVHD. At the same time, Ron should need less steroids which have their own side effects...the main one making him more susceptible to infection. The other battle at this point is keeping his blood sugar under control with diet, fast acting insulin, and long acting insulin. Blood sugar needs to be controlled for your general system health and its potential for feeding bacteria in an immunosuppressed state. I am feeling more comfortable with my role in monitoring blood sugar and dosing insulin injections.
Next week we have two days in Ann Arbor again. This will be the pattern for March.
Love to all,
Ron & JAN

Two Down and One To Go

As usual, this has been an interesting trip to Ann Arbor. We drove in on Monday afternoon and are staying at
Hampton North for three nights. Knowing that a winter storm was coming in and also scheduled for early appointments on Tuesday morning, it just made sense. Ron had his infusion of antibodies to help prevent infections on Tuesday. He had a hospital-type room in the infusion area of the adult bone marrow transplant clinic in Mott Hospital. All of the pediatric BMT clinic and hospital areas are also on 7th floor Mott but on the opposite side.
Ron's bloodwork showed that one of his white blood cell counts had dropped more (ANC .9), so he had a shot to boost this count, and they decided to have more bloodwork on Wednesday to screen for several viruses. It will also be a re-check of his IGG antibody count and a CBC. This blood test was after ECP light therapy.

Well, we did have the winter storm!! Ron and I returned to the hotel on Tuesday in sleet and wind, and then overnight we had 6 inches of snow. That was the most we have seen this year. The temp stayed 31-34 degrees, so part of it was rain. Now we are having light snow tonight but shouldn't be a problem to get out for the last appointment at 8:30 in the morning. ECP light therapy --and we will know some test results. We should be back home to Gilead Lake by 2:00 at the latest.

The storm took out the Direct TV and analog for about 24 hours, and many tree limbs were broken, especially in the tall evergreens. I figured out how to get the Indiana basket ball game on Watch ESPN on our IPad---throwing out another thank you to the group who gave Ron the IPad about 2 years ago. I use it everyday, and it is my most convenient link to our community of family and friends. Almost all of my blogging is done on the IPad. I also keep track of the weather for our travels, and I use Ron's U of M Health link for tracking appointments, test results, and I can communicate with Ron's nurse, PA, and Doc. So again, thanks!!

We continue to feel and hear your expressions of support in many ways. It means a lot to us! I need to let you know how important that is. This has indeed been the long haul. It was almost three years ago that Ron started having the first infections that were the onset symptoms of his leukemia, AML. We will be able to start biweekly ECP treatments in April. Weekly treatments are scheduled through March.
Love to all of you,
Ron & Jan

Home for the Winter Storm

Ron and I are both hoping that our weekly trips to Ann Arbor are pay-aheads for weeks at home when spring and summer arrive. Hampton Inn North has become our regular home away from home when we return for clinic visits. We continue to learn about insulin and have not yet found a regular pattern to the dosages that Ron needs when I check his glucose level four times a day. It doesn't always make sense with what his diet has been. The doc upped the evening dose of his long-acting insulin, and he doesn't always need more units at the checkpoints throughout the day.

The other med change was halving his blood thinner med, lovenox. His platelets are running lower again, and he has been on this med 3 months. Ron continues to gain back weight, nearing 160 pounds fully dressed at the clinic. His bloodwork this week showed that his immunity is low, so he will have another IVIG infusion next week to help prevent another infection by giving his immunity a boost. This is the infusion that takes about six hours and is a gift of antibodies from a thousand donors.

I am up late! The wind woke me up but no snow yet...it is on its way. I always see so many things that need to be done when we get home. We are going to celebrate Ron's mother's birthday on Sunday. She will be 92 Monday.

Hoping for a snow day for our Ohio teacher friends and family!
Love to all,
Ron & Jan

Time to catch up...

This is just a quick note to let you know that things are going well. Ron's at home nurse ( not me) has discharged him, but he will continue to have physical therapy at home for 1-2 weeks. Ron will have his two ECP light therapy treatments this week as well as a full pulmonary function test and clinic visit to monitor his progress. I anticipate that the steroid dose will be lowered again, and they will give me feedback regarding his insulin dosing.
More later...
Jan

Weekly Trips Begin

Ron's weekly ECP treatments are underway. Actually, this is the third week--with a 10 day hospitalization thrown in. Last week's treatment was done during his hospital stay for pneumonia. We are realizing more how dangerous that bump in the road was, but it is behind us now. We are still hopeful that the diabetes that developed or was aggravated by the high steroid dosage (to treat the pneumonia) will moderate or discontinue. Today his steroids were reduced by 10mg per day, and he has a prescription for a long-lasting insulin injection pen. That shot will be given in the evening, and he should require less insulin during the day. We are still in the learning curve regarding this process. Yesterday we learned what a Milky Way and a couple gummy worms can do to your glucose. Joking aside, I am now wondering if high glucose is the reason that he has told me that his vision is more blurry at times. He also seemed a little foggy last evening when it was high, and he drank 4 glasses of water at dinner.

Can you believe that February is half over?? My sweetheart was going to take me out for dinner tonight, but he is sleeping soundly after today's appointments that lasted from 8:30-2:30. He resumed the pentamadine inhalation treatment. There had been a shortage of the drug for this for months! He took a liquid that looks like thick bright yellow paint as an alternative. So glad that is over! Ron's appointments next week include his 18 month anniversary tests. As we greet and visit with staff and other patients wherever we go in the hospitals, today I had the thought that U of M is similar to a hometown---a medical hometown. We have developed friendships with so many staff members that we have repeat visits with. Ron met with Tim, his PA, today during clinic visit. Ron's recovery is going well.
Love and thanks for those positive thoughts that you send our way,
Ron & Jan