New Year's Eve

What better time of the year to reflect than New Year's Eve... But not so much on what Ron and I have experienced this year but on the support groups that surrounded us medically and emotionally. It is overwhelming to look back and hope that you have thanked everyone enough. There has been gardening, raking, fall clean-up, lawn mowing, downspout repair, mail delivery, dock removal, food, cookies and brownies, fruit, magazines, books, lotions, artwork from the grandchildren, holiday themed gifts, cards, texts, emails, and thoughtful notes for all the occasions that have passed since our move to Ann Arbor in August. Positive thoughts, concerns, and prayers have supported and comforted us during the times when we feel so fragile. There have been oncologists, bone marrow transplant doctors, physician assistants, R.Ns, Nurse Practioner, Techs, and other friends from the hospital and clinic. There was Randeep, a spunky young nurse who graduated and married in the past year. We cared so much for her as she cared for both of us. Allison could dish it out and tell it like it is..no excuses or pity parties allowed. She had lived this experience herself at a much younger stage of life. ..Kathy so professional, genuine, and tuned in to our needs and such a help in preparing us for what to expect. And now Dr. Magenau, our nurse Maria, and P.A. Tim coordinate Ron's medical care, but they mean so much more to us.
So a sincere thanks to all of you for your part in letting us know that we were not alone. Bring on 2012! It is going to be a great year.
Love, Ron and Jan

Friday, December 30, 2011

Ron's Wednesday appointments went smoothly, and today he had physical therapy at home. At this time, only one doc appointment is scheduled for next week. Ron's steroids were slightly tapered again, but we were told that the tapering will need to go more slowly now. We need to ask for a projected timeline. He will be weaned off medrol, then budesonide, and lastly tacrolimus. His weight stays fairly steady around 155 pounds.
Have a happy, safe New Year's Eve!

December 27, 2011: Day 125 after Transplant

Today's clinic visit went relatively quickly because today's bloodtest indicated that Ron did not need a platelets transfusion. His blood counts are still low but improving since his antiviral med was changed. We do return tomorrow for an appointment with the PA, breathing treatment as a precaution to prevent pneumonia, and his photopheresis light therapy treatment. We will be there several hours and are anticipating that the steroid dosage will again be lowered. Yeah!!
It has turned snowy and cold and looks and feels like winter. Today I worked on the last of my Christmas cards; there might be a few stragglers yet to do because I need to recheck my list. I really missed having Ron organize the list and address the envelopes.
Ron continues to feel better than he has for quite awhile, and we are so encouraged that we are in the last weeks of our stay in Ann Arbor. Ron will continue to be followed closely after we move back home, but we really don't know any details of that yet. It feels good to be thinking about moving back to Gilead Lake. We are expecting to move home in February after 6 months away.
Have a good new year's eve!

December 22-26, 2011

We have been enjoying family the past few days as I am sure most of you have been doing as well. Niccole and Cole have been staying with us for several days; Andrew, Lisa, and Abby came to visit, and we traveled to Bowling Green for Christmas Eve and Christmas morning. It was only the second time that we had left Ann Arbor since mid-August. (and the first overnight). As we have traditionally enjoyed for several years now, we attended services at Cale and Jessica's church and then had a late dinner with her family at her parents' home. Ron had set goals to be able to do this for Christmas and to be able to walk with just his cane. It was a triumphant time, and we were tired when we returned to Ann Arbor, but so happy to have had this Christmas to enjoy. So much fun at this time of the year with 7 of the 8 grandchildren still believing in Santa and elves!! The Christmas cards, notes, letters, texts, and pictures we have received have meant so much to us. We have truly felt the joy of the season.
Back to our medical routine tomorrow! Ron has appointments on Tuesday and Wednesday. Many aspects of his recovery seem evident to us. He is walking much better and is overall, just stronger. He lifts weights and has other exercises he does. His appetite has improved. 2012 will be a great year. It is time to start making some new year resolutions!

Wednesday, December 21, 2011

Niccole and Cole have arrived for Christmas! The plans are in motion, and Andy, Lisa, and Abby come tomorrow. Niccole takes over a majority of kitchen duties, so how great is that?! I love it. It will be 2012 before we know it, and it promises to be a better year for us.

Ron did have his weekly check up today and will return Friday for another blood test to monitor platelets in case he needs a transfusion. They are also watching his ANC number as it has dropped, and it guages how effective his immunity is. At this time they have scheduled 2 appointments next week and have slightly tapered his steroids again...moving in the right direction! The really good news is that he had his first negative CMV virus test, so they changed his antiviral medication to one that is not so hard on blood cells. His blood counts should begin an upward trend again in the direction of the normal range. Indeed, Merry Christmas!
Ron & Jan

December 20, 201

Not to worry...things are on track here for Ron's recovery and Christmas. Even with scaled back holiday plans, it feels busy with limited shopping, wrapping, and cards to mail.
Ron is definitely transitioning from the walker to the cane. Tomorrow he has labs and a clinic appointment, so those bloodtests usually drive how the rest of our week will go. Weight gain is slow, but Ron is able to have most foods but has to be careful not to have too many sweets or fats, or it upsets his GI tract. He has had no more severe abdominal pain. Moving ahead, grinding.
Make happy memories during the holidays! We have enjoyed holiday messages and letters telling of 2011 achievements and adventures. I might put out a two-pager for 2012. Ron and I have been making lots of plans!
Love to all, Ron & Jan

Home for the Holidays: Ann Arbor 2011

We have made our apartment look Christmasy with decorations from home. (and a huge, gorgeous poinsettia!) I asked Ron to make a list of our Christmas homes since we have been married, so....
Starting in 1970: Mt. Pleasant, MI - Central Michigan University
Starting in 1972: Lawton,OK and Ft. Sill, Oklahoma
1975: Baumholder, West Germany
1978: Ft. Sill, Oklahoma
1981: Knoxville, TN, - University of Tennessee
1984: Leavenworth, Kansas - Command and General Staff College
1985: Heidelberg, West Germany
1989: Bowling Green, Ohio - Bowling Green State University and military retirement
2008: Bronson, Michigan (Gilead Lake) Jan's retirement and Ron's 3rd retirement
2011: Ann Arbor, Michigan: temporarily living at 1455 Oak Valley Dr. Apt.103 48108

Saturday, December 17: day 115

Light snow, tree lit up-- one inside and one outside, fireplace going, and wrapped packages under our little tree..very festive! Ron's brother, Rick, GG his mother, and Tamra will arrive soon for pie and ice cream. The mood should be set for me to work on our Christmas cards later today.
Ron did have his bloodwork done yesterday and had a transfusion of platelets. It took 4 1/2 hours at the hospital; it was not a well-oiled machine yesterday. Frustrating for me but the good news was that his lab tests showed liver enzymes had improved significantly. We do not have to return until Wednesday.
Enjoy the festivities of the season and again we thank you sincerely for your support in a myriad of ways for Ron's recovery from the bone marrow transplant. It has done so much to keep our spirits positive.
Love, Ron & Jan

Ron's New Bone Marrow

I keep forgetting to tell you that the cytogenetics tests from Ron's bone marrow biopsy showed that his bone marrow is now 100% from his donor. We continue to thank him in our hearts and want to express our gratitude to him when the two year mandatory waiting time has passed.

Thursday, December 15, 2011

...just a quick note to let you know that Ron has not had any more pain the last two days. He has a follow-up appointment Friday morning to re-check his bloodwork and to have a transfusion of platelets. The valcyte that he takes for the CMV virus is hard on the bone marrow..especially his platelets level. The doc is planning to keep him on valcyte until Ron has a negative result on the virus test, so he will need transfusions periodically as a result. So there is a plan to get through this time, and except for the one day of abdominal pain, Ron is feeling pretty good. Hopefully, it will be possible to taper the steroids again next week. Home by February 1???

Tuesday-Wednesday December 13-14, 2011

Felt like we had hopped back on the roller coaster yesterday... Ron was awake and up at 6:00 with lower abdominal pain. Two oxycodone didn't phase it, so I called the clinic at 8:00, and they told me to bring him in to the ER. In 41 years of marriage that was the first time that he asked me to take him to the ER. He was given morphine which controlled the pain rather quickly. They were not sure what was going on, so he had a CT scan. That ruled out appendicitis which was a possibility. They do know that he had some internal inflammation where the pain was, but he didn't have any other symptoms like fever or vomitting. The bloodwork showed his platelets were quite low, so in the afternoon he was taken to the infusion center in the new BMT Clinic. There he saw the BMT doc on call and our regular nurse. It was a long day: gone 8:30-6:00 and then back this morning at 7:00 for more bloodwork and appt. with his regular doctor. Yesterday they allowed him to go home because he had a scheduled appointment early today. However if the pain had returned (it didn't ), he was to return to the hospital for admission.
Ron's bloodwork today showed that his liver enzymes are elevated, so they have dropped one of his meds, and additional bloodtests were taken to check for other viruses. He will go back on Friday for more platelets and bloodtests. He feels very good today, and this whatever this is, could dissipate on its own and not have been anything significant other than the pain he had yesterday. Because "something is going on", they were not able to taper his steroids today.
Love to all, Ron & Jan

Day 110 after Transplant: December 12

I have been working on the Christmas cards, so this year I am really appreciating the past years when Ron addressed all of the envelopes! Either the viruses or the meds for the viruses give Ron tremors, so handwriting is just too frustrating for him. I am hoping when meds are adjusted again on Wednesday that the tremors will go away. (If so, he can help with the cards because I will not be finished:)
When we were home yesterday, I hunted down our Christmas stockings and mugs. I saw our tree in the closet downstairs and my tubs of decorations. The thought of using all that stuff, and I like stuff, would be overwhelming. It reminded me of how it felt good to simplify things when we used to spend weekends and summer days at the cottage. My sister, Anne, and I have often reminisced about this. It is amazingly easy to allow yourself to adjust to what must be. As you might be able to tell, I have a lot of time for reflection.
Less than 2 weeks to Christmas and not stressed. Too much.
Love, Ron & Jan

Weekend: December 10-11, 2011

It has been a good weekend. Knowing that Ron doesn't have a doctor's appointment for a week (Wednesday to Wednesday), is a first time happening and a sign of his progress. What to do with this extra time and feeling better?? We decided to take a day trip home to Gilead Lake. That meant packing meds, IV pole, etc., so I suggested that we just spend the night, too. Ron felt that we should come back to Ann Arbor; I think both of us feel "medically safe" here, so we did return after several hours of just enjoying being home. (and when the Detroit Lions game was over) The lake has not started to freeze yet, but there is some snow on the ground and many migrating Canada geese on the lake. We also saw 3 swans, a diver duck, a few neighbors who were surprised to see our truck in the driveway, and the Troxells. It just felt good to be home, but I would say that to cope with all of Ron's recovery, I have somehow made time feel irrelevant and numbed my emotions as a coping mechanism. No, I am not a zombie; but by doing this, I am feeling and acting pretty normal.
We are seeing some glimpses of the end of Ron's treatment here in Ann Arbor. We will be here about one additional month as he continues to be weaned off steroids and has physical therapy in our apartment. The next step will be for him to go to a public facility for PT...when his immune system has improved.
Have a great week and enjoy all that you are able to do to prepare for the holidays. If there is an elf on the shelf at your house, enjoy! I know of 3 elves named Shred, Twinkly, and Frosty:)

Thursday-Friday December 8-9, 2011

It is snowy white out there again this morning! We put twinkling white lights on the first pine tree outside our living room slider, and it looks so pretty this morning. I have wrapped a few packages to mail, so it is just enough to feel in the spirit but not stressed.
Ron had physical therapy yesterday and will again today. I found him a red cane but he is not ready to transition to it yet. His upper body muscles are stronger than the muscles in his legs.
I didn't mention in my last blog that he also had a thorough eye exam Wednesday. He is in a study where his 2X daily eyedrops have a steroid in them instead of using Restases which is the protocol eye drop. Eye changes especially dryness, change in vision, and change in eye pressure can be side effects of the transplant procedure. Although he does have some blurriness at times, his eyes tested 20-20 with his glasses, and tear production and eye pressure were normal. He had a series of tests that lasted over an hour. To measure tear production, a blue dye is put in the eye while it is numbed, and miniature white candy cane shaped papers are hooked at the outside lower lids of his eyes, he wears those for 5 minutes, and blue tears change the color of the papers. My eyes are watering as I describe it! This was to test for dryness of his eyes, and his eyes are still normal. She told us that eye and vision changes have usually presented themselves by now if that is going to happen. So, more good news regarding his eyes!
We hope all of you are feeling the joys of the season and are not too stressed with holiday preparations. Although we had not planned on spending Christmas away from home in Ann Arbor, a quiet acceptance of what must be has settled in. It certainly does not measure up to many of the things that Ron has had to endure this year, and in some ways, it simplifies things.
Love, Ron & Jan

Ron's phone is working again, and he is able to text.

Ron's Phone

Ron's phone is not receiving texts now but can take a phone call. I will need to head to a Verizon store. We have tried several things ourselves, and I did some troubleshooting online but can't figure it out!

Tuesday-Wednesday, December 6-7

It was a good day. Ron's pill medication is controlling the CMV virus, so he will not need to be hospitalized for more aggressive treatment. The doc also tapered the steroid dose again today. Because the new clinic is only for adult bone marrow patients, it is much less busy. Pediatric patients have a separate clinic, and patients with other cancers continue to be treated at the cancer center. The clinic nurses will also spend time with patients during appointments in addition to the PA and doc. In the past although we had phone contact with the nurses, Ron did not see them during appointments. This is a great change!
Ron will continue to have two daily IV infusions at the apartment and continue with the same medications. His weight loss is not greater than what they anticipate, and they expect that to turn around soon. Indeed, a good day:)

December 5, 2011: the learning curve

We were off to the brand new Bone Marrow Clinic and Infusion Center at 7:10 this morning. This meant going to a new parking garage as well. The BMT Clinic is housed in the new Mott Children's and Women's Hospital at the University of Michigan Medical Center and is connected to the existing center. The BMT Clinic falls under the Comprehensive Cancer Center but is housed at Mott's instead of the Cancer Center. Only the BMT Clinic moved to the new hospital. It is located on the 7th floor of the hospital, and the in-patient hospital ward for BMT patients is housed on the same floor.(both pediatric and adult bone marrow patients)

That being said, everything went quite smoothly considering Ron was the first patient to receive a transfusion in the new infusion center. He received platelets today. The valcyte that he is taking to fight the viruses is hard on the bone marrow, so he may need additional transfusions of platelets or red blood cells during this treatment. He had a bloodtest this morning (That is on the 2nd floor of the new hospital.) to see how well the valcyte is fighting the CMV virus. When Ron sees the doc on Wednesday, we will know what is next...so hopeful that he won't have to be admitted for IV treatment for the virus that must be done as an in-patient. We really don't care to see the new hospital rooms although they're said to be lovely. Ron continues to eat well at home but is losing weight; I really don't know at what point this might be a factor in another hospital stay. When we first got home 11-11-11 his weight hovered around 160. He weighed 153 this morning. Finally, the swelling in his lower legs and feet is resolved, so that was probably a part of the weight loss. The GVHD of the skin has not returned...good news! The physical therapy sessions are scheduled 3 times a week at home, so we do continue to feel like we are moving ahead. Also, we anticipate the steroids being tapered again on Wednesday. Thanks once again for the support that continues to come to us in many ways. We appreciate your messages, emails, cards, prayers, texts, and positive wishes and thoughts. Every gesture helps more than you probably imagine.
Love, Ron & Jan

"After fall, comes winter..."

a quotation by four year old Abby Hover when asked about the year's first snowfall

Day 100!! December 2, 2011

It still feels like a very special number even though we are not making our plans to move home. The graft versus host disease which affected Ron's skin and gut soon after transplant required a high dosage of steroids to control. He continues to be slowly weaned off the steroids and cannot go home until he is off the steroids. They have been dropping him a quarter pill each week. He is on 1 pill each morning now. (1 1/4 pills last week) Because of the steroid treatment, his medications for the two viruses that reactivated have not been as effective, so the viruses continue to be an issue. The CMV virus is the one that might cause him to be hospitalized next week. The doc believes that his progress will accelerate as the steroids are eliminated from his treatment.
This morning Ron is receiving an IVIG infusion which will bolster his immune system. This infusion is the one that has antibodies from 1000 donors. Amazing! Ron is in an infusion room this morning that has 20 recliners against a curved glass wall to the outside. I am looking at evergreens and bare trees that have white lights. It is snowy and a pretty view.