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.