No More

The rain has changed to snowfall to a cold, windy, blue skies day. This seems more like Ohio February. Ron has his fuzzy blankets, and I am wrapped in a yellow prayer shawl that my niece Kara has passed on to me. The emphasis for Ron's care is comfort, and I have found comfort in Kara's shawl.
Ron continues to have chest pain periodically through the day. It is sharp pain in his lungs, and the oxycodone brings him relief. He can now have half doses between his scheduled doses if needed. Today was scheduled to be an "Ann Arbor Day"; it was time for his February immunity infusion. The renal failure and fall at home were the tipping point which has led to Hospice care. The stress on his heart from renal and respiratory distress led to some heart damage. There were just too many things going on this time. Even Ron said, it's different this time." Yesterday he told me that he felt like his whole body was disintegrating, and he ached all over. He also had a dream that he was walking device-free down a long alley. On the right was a bright yellow house that he had helped to paint. On the left was a huge medical complex. As he walked down the alley, doors opened from the hospital, and carousels came out that had medical care staff revolving on them. As each new carousel came out a door, he would say, "no more" and keep walking.

A visit by Blue

Ron has not felt as good today. He didn't eat any breakfast or lunch, and he had pain in his chest but consistently scores it 3 on a scale of 10. Dr. Wojo visited him twice. He had nitro to see if it might be related to his heart, but hot compresses on his chest helped the most. (And oxy) He has a slight fever. He didn't want to get out of the bed today, just feeling that the whole lift routine was too much. He cannot bear any weight on his feet, and his core is weak, so there is no other way to transfer him bed to chair. He did eat some dinner and is now watching basketball.
Some big news of the day is that I brought Blue, our cat, in to BG Manor see Ron. Ron has asked repeatedly to go home to see Blue or bring him in. Blue was a good boy, lying down by Ron and purring. He also liked looking out the window.
With hospice services, no bloodwork, monitors, or other tests are done. No IVs, no pokes for blood draws, but I suspect the chest pain has to do with his lungs. It seemed fitting to have rain all day.

Status Quo

We had a Super Bowl party in Ron's room at BG Manor. Anne, George, Ron, and I had planned to watch the game together for several weeks. With all of our big screen TVs, we ended up watching it on an old JVC, but you know what? It didn't matter.
Everything is about the same today, so I wanted to let you know that. I may blog again later.
Thanks for checking in.
Jan

An Eventful Day

Friday was a fully scheduled day through late afternoon. My day started early!! I am thankful for a smallish bladder because then I check Ron as he sleeps. Friday morning at 4:30 AM, I looked at him when I was up and noticed that his face looked mottled. I keep the blinds slightly open at night, so the street lighting can filter in. His hands were warm under his fuzzy blanket, but when I checked his oxygen level, it was only 62%. (oxygen flow is adjusted to keep it in the 90%s) My first thought was that I was looking at the finger monitor upside down; my second thought was that the finger monitor wasn't working right. I had a second finger monitor with me, so I got it out. Same thing. I checked the oxygen machine, and it was on 4 liters, not 6 which he requires now. The nurse was very close by, and quickly noticed that his oxygen tubing had kinked. The machine bumped back up to 6, and Ron was coherent and responding to questions. His oxygen level rose to near 90 over a couple minutes. I had had such a shot of adrenaline, that I was wide awake for the day. I had gone home to sleep the previous night, but at 10:00 that night, I curled up on my bed in Ron's room and fell asleep. I think that I was just meant to be there.
So on Friday we had several great visits: my sister, her husband George and nieces Kara and Jody. My brother's daughter, Casey, also drove over; all of them are from Indiana. Ron's brother Rick and wife Tammy also visited; Rick had Ron laughing as they reminisced. So good to hear that belly laugh. Two longtime friends from BG visited us early Friday.
Ron's medical visits were from the BG Manor nurses and aides who have been beyond wonderful, same to be said for his hospice nurse who came, and a physical therapist evaluated Ron for the possibility of, with help, stand and pivot directly into a chair by the bed, but his core and legs are just too weak. A lift is used to transfer him from bed to chair.
This morning I have written a basketball "viewing schedule" for Ron, and he as slept all morning. A very sleepy day usually follows an active day, but not to worry, there are basketball games until midnight. I am starting with Purdue and Maryland, and Anne and George will soon be arriving for the weekend. We have had Super Bowl plans for weeks.
Love to all,
Ron & Jan

Nearing the 7th year anniversary of Ron's journey

Ron continues to keeps me guessing. Each day seems to have its own bumps in the road, but there are many good moments, too. Ron was conversational between his naps and clear-headed compared to our days in the hospital. I think taking him off most of his many medications has been beneficial, and the flushing of his body with IV fluids ridded him at least temporarily of toxins. The IV antibiotics at U of M partially knocked back his infection. However, the underlying chronic problems are still there. He does have some confusion and does not understand his physical limitations. He asks to do things that he can't do and becomes irritated with my explanations. It's pretty mild irritation, mostly tone of voice. His discomfort is controlled with pain medication. Most of his discomfort occurs turning on his right side where the injuries were from his fall at home two weeks ago. Also, the "shingles-like" area across the small of his back is painful. It is healing though, and dressings were changed today.
I went to the villa to sleep last night. I don't think that we had been apart 7 hours since I had to have my knee scoped about 2 1/2 years ago. I am planning on doing the same tonight; Blue is happy to see me and curls up on my lap or next to me. Tomorrow we will have several visitors as well as the Hospice RN.
Thanks for keeping us in your prayers and positive thoughts. Include a prayer for a 15 year old young man who is a nephew of a "distant" Hover relative. He was diagnosed with AML leukemia, like Ron's, about 2 months ago. He has become very ill with infections and pneumonia after his 2nd round of chemo and is on a respirator in an ICU. His name is Paul.
Love, Jan

Chest and back discomfort

I woke this morning to Ron's juicy coughing; this is painful for him. Although we do not know the timeline, Ron's chronic lung infection and renal failure are on the threshold. He is not receiving antibiotics any more. Having passed through the futile medical and painful medical procedures to fight one more time, I am at peace with our decision of "no more". He is requiring more oxygen this morning. He had blisters form across the middle of his back last week which broke, leaving raw, painful skin. That bothers him more than his shoulder and rib injuries from his fall 2 weeks ago.
With all of that being said, he continues to enjoy reminiscing and visits he has had with friends and family. Cale, Ron, and I watched Wheel of Fortune last evening, and as Cale and I were looking at the bonus puzzle trying to figure out the final answer, Ron solved the puzzle!! He continues to keep me guessing! Ron talks about his plans to go up North and visit our favorite places in the Traverse City area and also a trip to Hawaii.
Love to all of you from both of us,
Jan

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!