Friends are welcome to visit.

We will be at BG Manor indefinitely. There is no timeline in place. If you come to visit and the timing is not optimal, we can visit in the lounge directly across from Ron's room. I have a bed in Ron's room, and can sleep here overnight. At this time, that is what I choose to do. Also, I prefer to be here at mealtime to help him eat. He is resting much better with no monitoring done most of the night. No blood tests or IV meds being given. He is not taking antibiotics or antifungal meds any more.
As kind as everyone has been some things are humiliating and hard to explain to him, so he told me that he was miserable.
I visited my doctor today, and my blood pressure is well under control. My bloodwork and urinalysis in the U of M ER was normal. The stress had affected my BP. More tomorrow. i need to catch a good night's sleep. Thanks for following my blog and sending email messages. I hope to eventually respond to everyone.
Love, Jan

"It's different this time."

Ron had told his medical team at U of M that "it's different this time." Dr. Mag told him that he should be so proud of his amazing fight, but that there were so many things affected this time. Even after Ron's hospitalization in June, I had told the kids that I felt like there would just be one more time...that he wouldn't be able to come home next time. Now it is the next time. I feel at peace that we did everything we could. I so appreciated the time that Dr. Mag spent with us this past week. The discharge nurse, social worker, PA Brittany, the nurses, everyone was comforting to us. Emily, the night nurse, talked to Ron as he rested and had a calming presence.
Ron is resting comfortably. He is quieter today but visits with us and watches basketball. He has said that it hurts deep within his lungs when he coughs. He doesn't really understand his physical limitations, so it is difficult to explain why I can't just help him get into the bathroom with his walker. They use a lift to move him from bed to chair.
Yes, it's different this time. I know that I can no longer care for him at home.

Back in BG

So very hard to say our good-byes to our Bone Marrow Transplant Family today. We had a lot of hugs and of course, some tears along the way. We have been welcomed at Bowling Green Manor, and hospice has also admitted Ron. I feel like things have gone well. Dr. Wojo, a family friend and Andrew's father in law, is Ron's doctor. He knows our story.

Bowling Green Manor and Comfort Care

Ron is sleeping peacefully this morning. EKGs, heparin drip, frequent pokes to monitor heart enzyme levels, blood sugar pokes have been stopped, so he can sleep for a period of time. Tomorrow, Friday, January 27, he will be moved to a skilled nursing facility with hospice services in Bowling Green. Bowling Green Manor. His IV antibiotics will be done, and he will receive comfort care. Ron has told me that he feels better about yesterday's difficult conversations with Dr.Mag and will enjoy the time he has left. He does have some confusion but can carry on conversations and wants to watch college basketball.
If you would like to send him a note, our Gilead Shores Drive address in Michigan will be delayed, but currently:

1509 Cogans Lane
Bowling Green, OH 43402

I see many people have read the previous blog, and I feel protected by your positive thoughts and prayers for both of us and our family.
Love, Ron & Jan

A Brief Update

Ron has been hospitalized since Saturday morning. He is very sick and has spent part of his time in ICU. His kidneys are failing, and he has had a "small" heart attack. He had been slowly declining for a few weeks, and he also had a fall last Thursday. He did not hit his head, but the impact with the floor injured his clavicle, shoulder joint, and a rib. That has been painful. Because his kidneys could not metabolize narcotic pain medication, he had serious consequences that required Narcan to reverse. Niccole and Cale have been with me to help understand how to move forward. My sister and brotherinlaw are here in Ann Arbor and other family members are coming tomorrow. I am surrounded by family and our friends in the Bone Marrow Transplant Team. Ron's transplant doctor, Dr. Mag, is the doctor on service for the BMT inpatient hospital wing, so that is comforting to have him as Ron's hospital doctor.

Happy New Year!

I used to try to sum up a year in one word. That would be a challenge this year....or maybe that is the word: challenge. It is a challenge to accept the changes in our lives, especially since early June when it was necessary for Ron to start being on oxygen 24-7. His lung damage and ongoing control of the infection in his lungs has made the need for oxygen a permanent change. In spite of the complications that has caused, Ron remains amazingly positive as you can see by his New Year Day's note to me.

Ron has had another immunity infusion this week; it seems like they do help him fight off sickness. He has had 2 separate days the last 6 weeks when I thought an ER visit was on the threshold, but then both times he improved after a day when his oxygen requirement had bumped up significantly higher. He doesn't get a fever, so I don't have that as a determining factor; a fever would actually make the ER decision a lot easier! He doesn't complain, and of course, he doesn't want to go.
Overall, we were able to enjoy our usual holiday celebrations, and now we're settled in to the quiet weeks following what felt like a busy December for us. January holds a strange combination of letdown and relief.

Medical Update

Today Ron had appointments at the University of Michigan Medical Center in Ann Arbor. The 7th floor of Mott Hospital in their huge connected medical center is the Bone Marrow Transplant and Leukemia Clinic. Half of the floor is for adult patients and half pediatric. Ron had bloodwork done at 8:30. Then we had breakfast in their cafe. His immunity infusion was scheduled at 9:30, and Dr. Magenau and Tim Higgins, PA came to his infusion room for Ron's appt with them. Ron's white blood cell count remains high indicating an infection. Because he already takes 3 antibiotics, an antifungal, and an antiviral, the next treatment will be immunity infusions once a month for four months. There is not another antibiotic pill to add to what he already takes. If he becomes acutely ill, he will have to go into the hospital for IV antibiotics. The infection is likely in his lungs, but he has no fever, and his coughing issues are chronic so no big change there. He has had more random cognitive glitches, but overall, that is okay. Because I am with him nearly all of the time, sometimes I feel like I lose perspective. He fell two days ago on his bottom but was lucky to only have a couple bruises. So hopefully today's immunity infusion will start to help lesson this infection wherever it is. Also, getting an IV in was difficult today. When they have to go to the second arm and find a different person to try, it is not going well. His veins are not good due to long term steroid medication and probably other reasons too. When this happens, we miss the central line that he had for years.
I can't say enough good things about Dr. Mag and Tim. We totally trust their medical decisions and value their friendship. Both of us feel like we are among friends in a competent, professional setting. The infusion center is adjacent to the clinic, and Ron has his treatment is in a private room, much like a hospital room. Today we watched the snow fly outside! This is the 7th winter that Ron has had treatment for AML leukemia and complications from his bone marrow transplant. The "new"BMT Clinic in Mott Hospital just celebrated their 5th anniversary from opening day. Ron had the first infusion administered 5 years ago. His first years of treatment were in the main University Hospital.
Enjoy the holidays and find peaceful moments.
Love, Ron & Jan

Thankful....

What a beautiful fall we had this year! It was nice to be able to get ready for winter at the lake without working in finger numbing conditions. Thankful for the villa, so we can be close to Cale's family and Bowling Green friends. I really am thankful for our attached garage here and close proximity to groceries and other shopping. Thankful for more time together.
I have learned to admit when we can no longer do things the same as in the past. It still amazes me that I mostly feel relief over disappointment. Although it seems to me that Ron stays about the same, when I think about what he could do a year ago compared to now, I realize the changes. He no longer can walk with just a cane. When we shop, he drives the cart in the store. If they don't have carts, I bring a shopping cart out to the car to hold his oxygen, and he uses it like a walker. He's lost stamina, and walking in a store behind a shopping cart tires him quickly. He has been on oxygen 6 months now. He doesn't draw breaths deep enough to medically qualify for the smaller, more convenient portable systems, so we take the large canisters when away from home. As far as meds, there haven't been changes for some time now. The clinic is having him extend the time between immunity infusions. I admit that concerns me.
Wow! I missed finishing this in the month of November! On to December! I think I will just add a couple pictures and post. Hope you have a wonderful holiday season. Below are pics of our peaceful Gilead Lake, Jack and Joey's November birthday, and one of Ron's barn pictures; he is getting quite a collection, and we are looking forward to finding barns in snow soon. Thankful....

A Few More....

The first picture is our Halloween pic! It was taken in a restaurant in Port Clinton on one of our "Fall Drives". That's a creepy character behind us. Ron took the picture of the red tree. After all the miles we have put on the car driving, he took that one from his window in the car while in Cale's driveway.
The medication picture shows what I do when setting up his pill cases. At the same time, I take inventory and figure out what I need to request refills for from the online pharmacy, or if no refills left, I can message the bone marrow transplant clinic, and they email a new script to our online pharmacy. I do all of this online, and Express Scripts allows me to have refills well in advance, so there is never an emergency because we're out of something. Ron's medications have been the same for several months. In addition to pills, he has 3 different inhalers and oxygen supplies that need to be managed.

Happy Halloween! 🎃

Ron and I have both loved fall for many reasons. This year has been different with warmer than usual days and no trip to northern Michigan. We have been taking drives to visit places closer to our homes, and we choose days that are mostly sunny, so the fall colors are shown off. Both of us continue to enjoy taking pictures of the sights we visit. I will post a few soon. I know the decision to not take overnight trips is the best for us. (Except between Gilead Lake and Bowling Green.)
I am still in the process of trying to get a portable oxygen concentrator for Ron. It should make our outings easier.
Since I started this entry, the respiratory tech has come and evaluated Ron's oxygen needs again. A portable concentrator is probably not the way to go due to the level of oxygen he needs. The batteries would not last long, and I would be looking for a place to plug it in frequently. Also, he would need a larger one, so I would still have a machine on wheels to pull around. The other option is a smart dose valve which is not a constant flow like he has now. With it, tanks last a lot longer, and we could have smaller tanks for outings. The valve monitors his breathing and adjusts automatically as his requirement varies.

Change of Plans

As difficult as it was for me to admit, we are not able to take our Michigan fall colors or Thanksgiving trip to Virginia. The oxygen is the deal-breaker. The logistics of transporting oxygen tanks, the oxygen concentrator, and the worry of a possible breathing complication were too much for me to deal with. I really hated to admit it! At this point though, the relief after making this decision is much greater than the disappointment. Ron is not able to help me with organizing any of this, packing his clothes, preparing medications, getting in and out of the car independently, loading the car, etc. I am still up for day trips in the area, and the fall colors are beginning to arrive! We went to Shipshewana this week...mainly for lunch! I must say again how so many strangers step in and assist us when we are out. The goodness of people is abundant. Doorways are the most challenging obstructions!
So again we adjust as there is again a shift in what we are able to do. Although he was disappointed, Ron was accepting of these changes when I explained how difficult it was for me.
We now have our dock out of the water, and I have done some fall decorating and gardening. I have always loved this time of year. We plan to spend more of winter at the villa in Bowling Green this winter.
Love to all,
Ron & Jan

"This is my solemn vow."

...for better or worse, for richer or poorer, in sickness and in health, to love and to cherish all the days of my life. This is my solemn vow.
September 26, 1970

Lung Function Update

We have traveled to Ann Arbor (University of Michigan Hospitals) on 3 of the last 6 days. These trips were for scheduled appointments to have new eyedrops made from Ron's blood, Bone Marrow Transplant Clinic, blood work, Pulmonary Clinic, and an immunity infusion.
I had the most questions for his pulmonary doctor regarding his CT chest images, managing oxygen, the condition of his lungs, and medications to prevent another pneumonia. The pulmonary function test showed that Ron's lung function has diminished since February when this test was last given. His last pneumonia was in June and involved both lungs. His progressive lung damage is not reversible, so he will not recover enough to come off the oxygen. There are no medication changes because he is already maxed out on the quantity and dosage of medicines that treat his lung issues. (Antiviral, 3 antibiotics, antifungal, albuteral inhaler, Spiriva, Advair, and Singulair) Looking ahead, when Ron has an infection that flares in spite of the medications he takes, then he is hospitalized and given the big gun IV antibiotics. He has been hospitalized for pneumonia 8 times since his transplant. Each pneumonia reoccurrence does more damage, so his health declines with each hospitalization.
We would still like to go "Up North" to see fall colors and go to Virginia for Thanksgiving. The oxygen will be an issue. The pulmonary clinic is working on getting a portable oxygen concentrator for us through our insurance. Ron will have to be tested to see if his inhalations are now strong enough to trigger the puffs of oxygen. I'm still trying to find out if there's a constant flow portable device.
Ron's blood work was good; he always has some abnormalities but nothing was way off. His white cell count was the one most out of normal range, but the immunity infusion should help attack any infection...probably in his lungs. I was concerned with him going back to having an IV for his immunity infusion. (because he no longer has a central line) He said that he didn't even feel them put the IV in, and they had no problem finding a good vein.
Ron's next appointment with Dr. Mag is in December, and his next appointment with Dr. Pendelton (pulmonary) is in January. Hope things can stay status quo. He got his flu shot this week, too.

Happy Birthday Ron!

We have been celebrating Ron's birthday for awhile now. It started with cake and ice cream with Cale's family while we were still in Ohio. It ended today with a quiet day at home at the lake. Ron can feel overwhelmed with too much going on and does enjoy just his quiet, peaceful days. What a beautiful day it was just to spend some time out on the deck!

And so the 6th year begins

Five years ago Ron had his bone marrow transplant. He has never returned to good health, but as he says, "I am still here!" In the right hand index you can return to August 2011 and read about this process. A bone marrow transplant was the treatment after his relapse of acute myeloid leukemia. During May-July 2011, he had chemotherapy to bring him to a second remission in preparation for the bone marrow transplant. His chemo each month required a week in the hospital at U of M, followed by numerous platelet and red blood cell transfusions at our hospital back home.
After Ron's BMT we were not able to move home from Ann Arbor for over 9 months. His transplant has been complicated by chronic graft versus host disease which is basically his new bone marrow products attacking his body. For Ron the most serious damage has been to his lungs, resulting in 8 hospitalizations for pneumonia, and now he needs oxygen 24-7. As a nurse told me, he really is a miracle. Ron had returned to officiating high school basketball and running a 5K during his first remission. Acute leukemia is very aggressive. When Ron was diagnosed with his relapse in May 2011, he asked the doctor how long he would have with no treatment. The answer was that it could be as short as two weeks. Weeks.
So as with all anniversaries, reminiscing has been a big part of the past few days. We have no regrets. We enjoy life as it is.
Another celebration will be a part of next week. Ron's birthday is September 4, and he will be 68 years old. Happy Birthday Ron!!

Required Kleenex

Ron spilled a drink on his planner this evening. When I took it to the counter to dry it, I found the following index cards inside the cover. Evidently, he worked on this project while I was gone today, and his caregiver, Lois, stayed with him.
Note: I don't know what AOE is, and Blue H. is our kitty.

We went to Ann Arbor on Tuesday, and Ron had his central line removed. It was his 3rd one, and he had had this one 2 years and 4 months, so that is one less dressing change and also daily flushes that are off my Nurse Jan responsibilities. He had had this line so long because he had 153 ECP treatments from January 2013 to May 2016. He kept it for two more immunity infusions and also his June hospitalization. In the future he will require an IV for infusion treatments. He has 3 skin tears that have been healing for 2 months, so it won't be too much longer until he can take a shower without wrapping anything in a ziplock bag or saran wrap. That hasn't happened for over 3 1/2 years!

Burr Oak High School #50

Hanging in there!

We're spending a few days at the lake. We've been productive! The pontoon is out of the lake and on its trailer. Gilead is a spring fed lake, and it is at a low level along the shoreline, so I was worried about the pontoon being stuck in the muck! The water is 50 feet deep after the drop off. So glad that we bought the pontoon in March and had some nice outings on it before Ron's last bout of pneumonia. No regrets.
We are going to Ron's 50th high school graduation reunion this weekend. He was 17 when he graduated; I was there! Literally a lifetime ago.
Ron is struggling with accepting needing oxygen 24-7. Of all the things he has been through, this has definitely bothered him the most. It also made him sad to see the pontoon taken out, and the big oak tree that had the grandkids'swing --in front of the cottage was cut down by the new owners. On an up note, our deck was restained this week, and it looks great. There is a boardwalk across the front and sides of our house, and that is going to be my fall project. It needs some repairs and staining.
Enjoy the remainder of your summer activities!

Night Owl

Weird time to blog but I am wide awake! Up early this morning (July 20) because it was an Ann Arbor day, and I had bandages to change and central line care to do before leaving for bloodwork and a visit with a cardiologist for Ron. The day went very smoothly, and Ron has been taken off his heart medication. Often when we see a new doc, there are a lot of blanks to fill in by answering loads of questions, but she had previewed everything and was ready to get right to the cardiac issues. She didn't call his heart issue a heart attack...a cardiac event caused by pneumonia in both lungs and shortness of breath. His pulse was 52 And blood pressure lower than his normal when we checked in, so I am anxious to see how things moderate witout a med that slows everything down. It would be wonderful if he requires less supplemental oxygen. He has been lethargic while on this medication.
He has had two injuries due to the oxygen equipment, so we are visiting the wound clinic again. I hope I don't get investigated! I thought it was ridiculous how much wound dressing supplies were sent to us for previous wound care, but now I get it. Anyone who has been on prednisone for long term knows how fragile it makes your skin. Ron has rather extensive skin tears on one arm from a fall due to oxygen tubing, and then a few days later I tipped an oxygen tank over, and it hit his leg.
Tonight we had a homeowners association meeting for our villas, so I wanted to attend that...then crashed on the couch afterwards, so that is why I am wide awake now. Wound clinic appointment in about 6 hours, so I need to get back to sleep!

Packing Again

Getting ready today to make the trip back to BG. There is always quite a bit to do, so I don't hate myself for a mess when we return! We have had a very busy time here at Gilead Lake. It was a 4th of July that I will always remember! I will add a couple pictures. Family time is special, and so this holiday was beyond special with all four of the kids and families home. My sister and brother in law hosted a get together on July 2nd, so all of the Troxell cousins from my side of the family were together for a beautiful lake day. Ron handled all of this "commotion" very well. He just sleeps when he needs to and retreats if too much is going on for him. His oxygen requirement is unchanged.
It was fun seeing tents in the yard and the grandkids swimming in the deep water. Our own fireworks, compliments of Andrew, were amazing. He had waited 3 years to provide a show for us. He was the family hero to Matt's kids as they assisted him with lighting everything. I will admit that I was tired when everyone left and needed more than a couple naps to recover!
Good times.