Day # 400 after transplant has passed.

This is a relaxing weekend. We are keeping busy here at home, but there are no outside factors affecting our schedule or the pace we're moving. September just might be the best month of the year. It has definitely been our best month of 2012, based on Ron's progress, the number of doctor appointments, and the weather!

Ron is reading for pleasure again as he continues to adjust to having sight only in his right eye. He has physical therapy twice a week...probably for at least another month. He practices walking some without his cane, and his balance issues are not as severe. Both of us are enjoying being outside more during this cooler weather in September. He continues to take several medications and has a weakened immunity system. Most importantly though, he is continuing to make progress, and his neurologist says that progress can be made for even 2 or 3 more years. He seems more like himself.

Ron has had side effects from many of his treatments and medications, and as medications have been reduced or eliminated, those changes in medications seem to help him return to himself. Some meds had especially affected his personality, but that has now reversed. His cure has come at a high cost to his body, but the leukemia is in remission, and his body will continue to heal. I hope he will be able to drive his truck again and play golf again next year.

One more picture...

Things worked out well for our anniversary dinner in Angola, Indiana. I was talking on the phone to my brother and telling him that we were going to eat at Ruby Tuesday, so he said that he would join us. Not realizing that it was our "itimate anniversary dinner" until after the waiter brought our drinks, Gary felt obligated (honored?) to buy our dinner for us. Ha! A good plan. (Drinks for us are Pepsi and carbonated water; Ron has no interest in wine, beer, or mixed drinks which is good because he is not allowed to have alcoholic beverages.)

I have to add one more picture, so someone can see the bridesmaids' bouquets, and also for Peggy who is in this picture. All of us were nearly the same height!

In sickness and in health...

So many of last Year's celebrations and holidays were spent in Ann Arbor. But it has been worth it to have reason to celebrate together again this year. Today.

Ron and I were married in LaGrange, Indiana, 42 years ago today. September 26 was chosen as our special date rather than a summer date when both of us would have been on break from school, so my sister (matron of honor) who had a baby due at the end of August, and my brother (who gave me away and was recently home from Vietnam) could both have key parts in our wedding. I was a first grade teacher and had school on Monday after our wedding, and Ron had graduate classes. We had a cake and punch reception in the fellowship hall and a small gathering at Ron's parents, then we were on our way "in marital bliss" as Ron puts it.

Hope I didn't make him sound like a jerk in my last blog regarding the missing "I'm sorry" response for the first 40 years of marriage. That is just how it was and a part of who he was. So Happy 42nd Wedding Anniversary to us!! I feel like celebrating!

Life is good.
Love to all,
Ron & Jan

Pure Michigan: Life at the Lake

Experiencing and Accepting Change

With my time and energy not so focused on "in your face" medical issues, I have been thinking more about the changes that we are adjusting to. Once again we were in a situation where someone did not recognize Ron although we were together and that person knew me. (And who is this with you? I don't think I've met him.) That is extremely difficult. When I see a picture of us before transplant, even I cannot believe how Ron has aged in the past year. Aging is a typical change during bone marrow transplant but not one you can really imagine or prepare for. (It just doesn't seem important when you're in survival mode.)

Another change is the slow pace that occurs when tackling any activity, but I am grateful to be able to be resuming more normal endeavors. I think this will continue to improve as Ron's mobility and endurance improves. He has resumed using the cane much more than the walker. His ability to walk is back to where it was at Christmas time... before the chronic GVHD complicated his recovery.

Another change is how people react to us. I think most people see him as having "the cancer treatment" look, and you can see that in their eyes. It is not a look of pity but more one of I'm sorry you're going through this. I know almost everyone can relate to a loved one with chronic illness. Total strangers reach out to help us as we at times struggle to get through a door, carry too much to handle efficiently, etc. Very nice and appreciated.

Another change is when Ron tells me that he is SO SORRY. He was never one to tell me that he was sorry and there were times I wished to hear that from him, so maybe that is why it is so painful to hear now. To put that in perspective, if he had shut my fingers in a car door, he might have said, "Why were your fingers there?", "You should have known that I was going to shut the door.", "I didn't hurt you on purpose." or something to that effect.

Just thinking about change tonight.

Good News from Ann Arbor

We are wrapping up this week's Ann Arbor visit today. Yesterday was a full day. Getting up at 5:30 to get ready and drive to U of M for 9:00 bloodwork to start Ron's appointments was a stretch for me! The last test ended after 5:00, and it was nearly 6:00 when we arrived at our Hamptom Inn room. I had made the reservation located next to Briarwood Mall, but I had no energy left for shopping, and it ended up that we didn't even go out for dinner.

BUT it was a great day. All of Ron's tests came back, and there was only good news. Top billing was no leukemia in the bone marrow biopsy!!! The CT scan of his head showed no new bleeding at the sites where he had hemotomas in August. That issue is still a total mystery to us because they felt the bleeding was due to a trauma in late July, but we were not aware of any fall or head-bumping. The bleeding was between the skull and brain in two areas without any visible bruising on his scalp. His eye test was stable as is his bloodwork this visit. He had also had a heart echo test, and he has a strong heart. (which I all ready knew...on several levels). What great news for us!

What's next? Ron will continue with out-patient PT rehabilitation in Coldwater twice a week, and his next AA check up is in 3 weeks. This will be the longest stretch of time between appointments with his BMT doc...ever. Day #400 since transplant is on the horizon. Ron started his "baby shots" yesterday. A bone marrow transplant wipes out immunity, so he had four 2 month old baby shots and also a pneumonia vaccine.

Thanks for your continued support and interest in Ron's journey. His body paid a high price to be leukemia-free, but he can continue to make progress physically, and now that he is able to have immunizations that should help protect him from infections.
Love, Ron & Jan

Update from Gilead Lake...

This is a Ron Hover update...not a Blue Hover update. This was a busy, yet okay week. We are on a roll. We enjoy Blue's antics more than ever; it is raining periodically, so everything is growing well and doesn't require time consuming watering, and best of all, Ron is on the mend again.

We spent two days in Ann Arbor for several year anniversary tests. Although Ron was aware that he was having some hearing issues, it was hard for him to find out that he has 40-50% hearing loss in both ears. However, with amplifying sound, he can hear very well, so hearing aids will work well for him. We are moving slowly with the hearing aids as Ron adjusts to this latest disappointing news for him. I say anything that can be fixed is not too bad.

In addition to the hearing test, Ron also had another CT scan of his head, an echo heart test, and a bone marrow biopsy. He has been sedated for his last two bone marrow biopsies and is still trying to figure out why he went macho and had the first 6 or 7 with just a local anesthetic. He does have some soreness for a day after the biopsies.

Next week we will meet with Dr. Mag for a regular appointment and hear test results. We will again be in Ann Arbor for two days. This time I made a reservation at the Hampton Inn next to Briarwood Mall. In addition to seeing his BMT doc, he will also see his symptom management doc, start his immunizations, and see two eye doctors. This will be his last eye appointment for a study that he was a part of. Instead of restasis, he has used a steroid eye drop for over a year now. It is Lotemax, and he has not had dry eyes which is a common side effect of a bone marrow transplant. The other eye doc specializes in neurological vision problems. Ron started being seen in his office after losing sight in his left eye.

We are enjoying the return of the football season and the cooler, wetter weather. Both of us love September and October especially. Hoping for a great autumn and steady progress in Ron's recovery!
Love, Ron & Jan

A reminder to not lose hope...

It feels like a miracle has happened.  Blue came home about 9:30 last night.  I was in the process of telling Kate the details of what had happened, and he popped up outside the window.  I think both of us were thinking that we were looking at a ghost!  Other than being skinny and smelling musty, he seems to be fine.  He was very thirsty and hungry.  He woke me up several times during the night being lovey and talking.  I wish he could really talk!! 
Thanks for all of the comforting words and kind thoughts as you have read about this last adventure of ours.  I thought it was unbelievable that he was gone, but it is more unbelievable that he is back. 
Love, Ron & Jan