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.