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