Progress: Day 432 after Transplant

Making progress... The pictures below will help tell the story. You can compare Ron's breakfast pills in February and now in October. He continues to have 3 liquid meds and Advair that he takes also, but he no longer uses the inhaler. Now that is progress. Another sign of progress is that we have had to look for his cane a few times! He uses it about half of the time inside the house---then doesn't know where he left it! That is a good problem.
I have also included a World Series picture. We wish the Tigers had had a better World Series, but they have given us many hours of entertainment.
February 2012: Breakfast Pills

October 2012: Breakfast Pills

Thank you Tigers!

Fall Colors

The first two pictures are near Gilead Lake! The last one was taken on our drive up North near Northport, Michigan. Ron and I both love Fall, and this year is extra special.

Pure Michigan

Wow! Life is good if I haven't blogged for almost two weeks! Ron planned a trip up North in the Leelanau Peninsula area to see fall colors, visit casinos, go rocking on the shore of Lake Michigan, and make stops at a Barb's Bakery, Knot Just a Bar, and Kelcherman's apple orchard that we had visited in past years. What a great trip for us even though it rained most of the weekend. The drive north was sunny and treated us to amazing fall colors. It was 39 degrees and heavy mist when I rocked at Christmas Cove early Saturday morning. Before it started to really rain, I had found a few Petosky rocks (state rock of Michigan) and many beautiful rocks for my rock garden.

We spent a night in Ann Arbor on our way home because Ron had early appointments in the GVHD Clinic on Tuesday, October 16. He is doing very well at this time. His cough from August's pneumonia has nearly resolved; in fact, his pulmonary function tests showed the same results as February. Because he had some rash on his arms and back, his steroid med was not tapered, and I am putting a medicated cream on his arms daily again. As the doctor said, just a reminder that Ron has chronic graft versus host disease... but so incredibly better. His immunity remains compromised, so we are cautious and go through bottles of hand sanitizer. He remains on preventative meds, meds to treat his mouth, meds to treat his lungs; steroids, vitamins and minerals, and is weaning off all "mind altering" drugs, as I call them. His spirit and mood are positive, and he seems very much "his old self".

We continue to have special appreciation for our days at home and the normalization of our lives. Ron will have physical therapy at least through November and is making great progress. The walker is parked, and he uses a cane when out but walks unassisted at home about half of the time.

I plan to post a couple pictures from our colors trip soon.
Love to all, Ron & Jan
Go Tigers!!

Moving ahead...

...had a good trip to U of M on Wednesday, October 3. It truly feels like we are making a shift back to a more normal life. As Ron continues to be able to have lower doses of part of his meds, it feels like we are peeling back more layers that have masked his persona. It is great to be thinking more ahead instead of living in the moment.

Frustrating!!! I finished this blog last Saturday..then lost everything except the first paragraph in cyberspace!! So here I go again.

Ron and I returned to Bowling Green on Friday-Saturday: our first trip back to Cale's since Christmas Day. Of course, we had had visits with them at Ann Arbor and Gilead Lake. It was so good to spend time with them and see the changes in their home and also spend game time with them at Montesorri School. Joey and Jack demonstrated their two wheeler bicycle skills, and Allison didn't miss a beat as she picked a book and went to Ron for a story as soon as we arrived. Their soccer games were cancelled due to rain, muddy fields, and cold, so Jack and I made monkey bread, and we had puzzle-mania.
Grammy time is the best! (good visit with Jim T, too)

Ron and I continue to be amazed by the splendor of autumn. The fall colors are spectacular this year. The cooler temps are such a relief from summer, so the sweatshirts are out of storage. Perhaps missing this time of year last year has made us even more thankful for the beauty of the season. I am lesiurely gardening, and Ron continues to heal and make progress.

What's next?? Ron has an appointment in a week in the GVHD Clinic. His progress, treatments, and status will be reviewed and evaluated by the head doc of the BMT Clinic. He might adjust his meds. He will not see Dr. Mag again until November 12 which is 5 weeks; now that is progress! Ron's steroid dosage was decreased last week. That med drives the train for all of the preventative meds he takes.

Enjoy the beauty of the season!
Love, Ron & Jan

Sending positive thoughts to Coach Chuck Pagano...

Thinking of Indianapolis Colts Head Coach Chuck Pagano, wife Tina, and family tonight. He was diagnosed with AML last week and is having induction chemotherapy...same chemo drugs as Ron had in April 2010 after his diagnosis. Coach Pagano has a different subtype M3, Ron M4, but both are AML which is bone marrow cancer. Can't help but re-live what a shock it was to hear the word leukemia and clearly remember asking, "You mean he's going to have to spend the night in the hospital?" (in Coldwater, MI) Then the next day Ron was taken by ambulance to U of M, and we were told that his first hospitalization for induction chemotherapy would be a month long. My head was reeling with questions, emotions, and an overload of information about AML.

In some ways, it seems like yesterday when our world turned on its axis, but it was exactly 2 and 1/2 years ago today. In some ways, it seems like a lifetime ago.

So happy for a tie...

Stay tuned to see what the Detroit Tigers do when they win the American League Central! There are 3 games left, starting tonight. Go Tigers!

Manager Jim Leyland said that his best call/decision of the game was to get out of Prince Fielder's way when he jumped down into the dugout and ran through it like a bull after his 2 run go-ahead homerun in the 8th inning.

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

Looking Back at This Difficult Week...

This has been a hard week for us. Blue has not been found, and we haves missed him in many ways. Those of you who have had pets die know what we are going through. Blue is probably our last pet, so that makes it even harder for us, and it was so unexpected. Cats are quirky, but Blue did not "take off" like some cats do.

Ron had physical therapy today. One of the walls is all mirror, and it was really the first time that he had had a full body look at how his body has changed and how he has aged through this recovery. It was hard for him.

So as Matt, one of Ron's PAs when Ron was going through chemotherapy for acute myeloid leukemia, would tell Ron, "You will have peaks and valleys...bumps in the road." We have been in a valley this week. We have had sadness that can physically make your heart ache. It is a dark place, but both of us are fighters and planners, so we have our calendars out and look ahead at what we must do and also to plan some things that we want to do. We were lucky to have had Blue for 12 years. He was a kitten that I rescued after he and his litter mates were dumped on a side road. Then out of the blue, he left us as abruptly as he entered our lives. Maybe someone else has taken him in, and he has once again been rescued. I would like to think that is true.

A Sad Day for Us

Ron continues to be on the mend from pneumonia. Yesterday we went to Coldwater , which is about a half hour drive, where he had his physical therapy evaluation at a rehab center. He will go there twice a week for physical therapy. Pneumonia kicks butt.

Then if all of this has not been enough, we have been kicked in the gut again. Our beloved kitty, Blue, has been missing now for two days and two nights. No sign of him at all, and I don't think he ever missed a meal. I have some hope that whatever happened, he might find his way back to us. We have had him 12 years, and this has never happened before. I am devastated; he was a source of joy for us every day. ..very cuddly and loving. All ready we have missed him so much.

Year Two of Recovery Begins

This week at home has been good for the soul. I now see a pattern in how the hospitalizations effect me. The stress of the visit doesn't really surface until I let my guard down. ...and that can be anywhere. So I have had my good cry which will hold me for quite awhile, and we move on into Year Two. Yesterday was the one year anniversary of the transplant.

Ron continues to recover from the pneumonia. It takes awhile. Neither of us has ever had pneumonia or even bronchitis, so we are in new territory. His weight is at a new low, so lots of my macaroni and cheese and special strawberry milkshakes are on the menu. I will be glad when he can start his immunizations next month. On Monday we will see our Dr. Mag; meanwhile a visiting nurse has come to the house twice this week.

So again, thank you for your support this year. Every message was appreciated, and every card has been saved. (sorry, kids..one more big box in the house) I briefly looked through them when I was gathering all cards in one place. I think it will be a winter project to look at them again.

Love to all, Ron & Jan

Going home....

We will be leaving Mott Hospital at about 4:30 to drive home. It is a two hour drive but might seem longer since we are so anxious to return to Gilead Lake. A nurse will visit at home tomorrow.

Kudos to U of M- Mott Hospital...

We will be back home for Ron's one year anniversary of his bone marrow transplant. What a year it has been with the first hospitalization for the stem cell transplant itself, the following hospitalizations on 8th floor University Hospital for a variety of complications, and then the last two hospitalizations at the new bone marrow transplant in-patient unit on the 7th floor of the new Mott Hospital! The BMT Clinic for regular appointments is also on 7th floor.

We wonder what "weather surprises" autumn will bring to Michigan. Both spring and summer were so atypical. Regardless, just spending it at home this year will be appreciated at a higher level.

Ron continues his recovery from this bump in the road. A couple additions were made today to help rid him of his lung congestion. He also will receive an infusion to help treat the two same persistent viruses that surfaced again on Saturday in lab cultures. Infectious disease and our Doc Magenau believe the one is a false positive. The plan is to definitely go home Monday. I did all of our laundry this morning. The family lounge is huge, has a kitchen, 3 washing machines and 3 dryers. They even provide the laundry detergent!

Yes, kudos to the care-- medical, emotional,and logistical- received here at the University of Michigan Medical Center. They call it "The Michigan Difference".

(Regarding basket ball and football, we continue to be Spartan and Buckeye fans!!)

Admission for Transplant: One Year Ago Today

No specific results from tests to report, but Ron is much better. His pneumonia and UTI are resolving with the course of IV antibiotics. (so probably bacterial infections) Numerous tests have been taken, but all reports after the original diagnosis of pneumonia from Sunday's chest x-ray and the CT scan of his chest and a urinalysis on Sunday, none have shown a specific organism. All viral and fungal tests were negative.
They have stopped one of the IV antibiotics, and he will continue with the others through the weekend, and we will probably go home Monday.

After returning home, the physical therapist has recommended PT in an out-patient facility. Ron would go twice a week, and I am starting to research what is available near home. I think these outings would be good for both of us. His strength is okay, but he will need to develop endurance and improve balance.

So things have turned around again. As a nurse once said, let's get this train turned around. Ron has had some of his favorite nurses and techs and a couple new ones. Actually, our #1 favorite RN (except for our Andrew, of course) has been his nurse quite a bit. That continuity means a lot. We are feeling safe here and full of trust that this medical team will resolve Ron's acute issues. Having his BMT doc on service all week has been fantastic.

Thanks for continuing to follow Ron's recovery.