Back home at Gilead Lake

Ron needed oxygen for a few hours Saturday afternoon, so we couldn't come home until Monday afternoon. After reviewing everything, the doc thought the IV antibiotics were the best treatment, so I am giving him cefapime IVs every 8 hours. I have done this several times before, and I use his central line.
A nurse has come to our home twice and a PT once. The PT thinks that I should write a book. We will be back in AA 3 days next week. Physical Medicine is going to evaluate him for more intensive rehab.
It is exhausting to be in the hospital 6 days. Then you are hyped up to be home and do too much the first day. I am catching up some with naps and into the routine of new care for Ron. He has improved some the last two days.
Niccole surprised us by arriving on Thursday for the long weekend. I have put her right to work!
I am working on making the arrangements for a moving company to transport some of our belongings to the condo in BG in mid June. The condo will give us more options for where we go from here. Lots of unknowns.
Love,
Jan

Getting answers, making progress

Ron's lab cultures have grown a viral and bacterial "issue". He had parainfluenza type 3 which contributed to the pneumonia developing. The sputum sample has pseudomonas which is an antibiotic resistant bacteria. To treat the respiratory flu, he had an infusion of antibodies-- the one from 1000 donors. Thank you blood donors!! There is not a specific antiviral med for this type of flu.
For the pseudomonas, they have put him back on IV cefapime which is an antibiotic that must be given in the hospital. The bacteria culture is now being tested to see which antibiotic in pill form will best treat it; that result should be back today, so now they are saying he can probably go home Sunday afternoon. His coughing and breathing are much improved. The rapid heart rate, croupy cough, pneumonia and low oxygen saturation were complications of the type 3 flu. He has not needed oxygen the last 2 days.
We will need to come back to AA for ECP light treatments next week. He can't have them when sick because they alter the immune system. The balancing act continues. I will feel okay about going home Sunday, especially since he will be checked next week. He does not complain of rib pain but does take an oxy at night to make sleeping easier. He has not had a fever at all during this illness. Very stoic as you might imagine. Me, too; I guess or maybe getting somewhat numb to all of this.

Quick Update from AA

On Tuesday afternoon we arrived in AA after the closing on our condo in Bowling Green, Ohio. Within a half an hour, a storm blew in with 65 mph winds. That night breathing difficulties which had been escalating worsened. Early in the morning Ron fell off the curb in a parking lot; two men helped me get him up to a picnic table. He refused to go to the hospital until his scheduled appointment at noon. He was admitted because of the fall and his need for oxygen.
Ron has been undergoing testing, and he has pneumonia again and broke four ribs in the fall, so he is taking IV antibiotics and has responded quickly to treatment. He really does not complain of pain from the rib fractures even though there is some displacement. He rarely mentions any discomfort except for skin itching.
So we will be at Mott Hospital where the bone marrow transplant clinics and in-patient hospital for BMT patients - adult and pediatric- are located. Ron will be a patient here for a few more days.

Change

We have been making some changes. Today we sold Ron's truck because for some time he has not been able to drive. He did some "country driving" last summer which was questionable due to his poor vision and reaction time. Also, I know that we will continue to need more assistance with Ron's care and will continue to make trips to Ann Arbor for treatments every other week. I have adjusted to just letting some things go. Ron gets frustrated with my over-mothering. Usually, I let him choose his clothes, decide when to shave, give less comments and direction concerning clutter around his chair, food on his clothes, etc.
On Tuesday we will be closing on a condo in Bowling Green. We will be able to make day trips to his appointments and stay at the condo. It will be wonderful to see Cale's family much more and lean on our Bowling Green friends. We are keeping our lake house in Michigan; we are closer to our siblings here and are in the area where we grew up. Time wise, we will probably be at the lake more days during the warmer months. We will stay in BG during AA weeks and in the winter.
I had my first physical therapy session today, and my recovery is going very well. I expect my knee to be "totally normal" by the end of May.
Put grape jelly out today because I had seen an oriole. Amazing! They love it and such a special sight to see! I finally put out my hummingbird feeder and am waiting patiently. We have numerous yellow finches coming to our feeders, too. Loving nature's surprises...the two deer I have seen frequently were behind our garage today. Very pleased that the pump and well I had drained and winterized on the garage side of the road is working again. I held my breath as I turned it on!

To Honor Ron...

a Relay for Life photo sent by Gregg and Darlene

Our plan came together!!

Don't you just love it when a plan comes together? I do have to admit though that I had more discomfort than I had expected the first 24 hours after the scope. I had thought that I would immediately be able to crutch around the house. Not so, but the pain meds covered the discomfort. So glad that we have had around the clock help for 3 days and a nurse visiting 5 days. The hospital "gave us" an ice water lower leg compression cuff that circulates cold water. It is electric, and the ice water tank has to be changed about every 4 hours. It alleviates pain and swelling. Everything is so much better today, and I am able to crutch around. I am totally taking advantage of all the great support we have had. Our siblings and spouses are the best!!!

Staying Busy!

Thought that I had better let you know that we are doing okay! I have my knee scope tomorrow and have been busy making all arrangements for both of us! Our siblings are going to take care of us. We have also been to Ann Arbor for light treatments and Dr. Mag appointment. Things are stable, and Ron had an immunity infusion, too. During this busy time, we have been looking at condos back in BG. More on that later.

Great to see Ron outside!

It has been 70 degrees the last two days! Ron wanted to go outside today and walked around the fenced-in garden area. He held onto the fence, used his cane, and stopped to rest 3 times, but he did it. I hope this is the beginning of a new trend. He also watched me clean out the asparagus bed.
It was a loooong winter. He had his 75th extracorporeal photopheresis light treatment last week; the treatments help to counteract his over zealous bone marrow which attacks his own body. Chronic graft versus host disease is like an autoimmune condition.

Welcome to early spring!

This was an Ann Arbor week. It didn't turn out as routine as we thought it would be. Ron has his blood draw appointment first, and when he pulled up his shirt because they draw from his central line which has 3 tubes, one line had blood in it, and there was dried blood on his chest and all tubing. Long story short, that tube had a hole in it next to its clamp, so he went into the OR in the afternoon and had an all new central line placed. Routine to them, not so much for us. He has had chest bruising and tenderness but about back to our normal now.
In spite of that experience being tiring, we decided to go ahead with our plans to travel to BG the next morning to see a condo to help us get a reference point for what we might buy or rent there. No crystal ball but as we might continue to need more help and know that we will continue to travel to AA frequently, a home base in BG in addition to Gilead Lake makes sense. We are excited about continuing to explore that option. It is a one hour drive from BG to AA, so visits would not have to be overnight.
Ron's appointment with the BMT doctor did not have any surprises. His medications will stay the same, told Ron that he cannot drive (of course....the difference being that Ron seems to be accepting now that he will never drive again) told us that nothing can be done about his loss of teeth with his current health status, and suggested that we move ahead to have the serum eyedrops made. Ron's blood will be a part of the serum formula.
It is an absolute delight to have the lake thawed and the first spring flowers starting to bloom. Our temperatures will go up and back down but no more extended frigid weather. Yeah!! I love getting back outside for some yardwork. Happy spring to all of you!

Per her wishes...

GG, Ron's mother, passed away on 11-12-13. Today Ron's brother Rick, Tammy, Ron, and I gathered at South Gilead Cemetery when her ashes were buried next to their dad. Rick did such a beautiful and complete job of carrying out her wishes, and now it is done. She would have been 93 in February.
Ron did not get out of the car, but I was able to pull up close. Rick, Tammy, and I shared some closing thoughts, and of course, we had lavender and purple flowers, her favorite. It was a peaceful setting and felt like the appropriate way to say a final good-by.

And so, the fifth year begins.

The 4th year anniversary of Ron's diagnosis of acute myeloid leukemia has passed. And the fight continues. He no longer battles leukemia, but the fight is between his body and the side effects of his bone marrow transplant and medications. Next week he will see the doctor who is the Adult BMT director. He periodically sees Ron in regard to his chronic graft versus host disease. I am not anticipating any major changes in treatments or medications. He may order tests to monitor Ron's brain and lung changes. Grateful to be overall stable now.

As many of you know, a special Army friend organized the gift of an IPad for us when Ron relapsed in 2011. His wife died unexpectedly this week. Both of them have been amazingly supportive and caring. That's just who they are. Their community reached far and wide, and you may have seen messages from Mort and Janet. Janet, you are already missed by many. I always admired the way and manner in which both of you kept contact with so many and genuinely cared.

This was Ann Arbor Week

It feels like things are under control again. That means that we have a plan for April. We have just spent two nights in Ann Arbor, and I get around easily with my knee brace. I have no pain in my knee, the brace keeps it stable, but it can't heal until after arthroscopic surgery. My sister Anne is going with me to the surgeon this week. I want to make sure that we have a solid plan in place at the end of April when I have the surgery. That includes plans for Ron's care. Griffiths are with us a lot so understand what that means. We only live 10 minutes apart. I am planning to bring on board his home nursing service, so they can take care of some of the nursing things I do: dressing changes, flushes, monitor glucose, injections. I organize his medications, so that is just a matter of giving them to him to take. Ron's brother Rick and Tammy will help us too. My brother Gary and Vicki will take me for the surgery and help afterwards too.
We will see the head BMT doc in two weeks, so I will hear his perspective on things. Putting all that information together I am anticipating the best plan is to stay in our home with help. I can't imagine planning doing anything different. Everything we need is here. Other than the 3 steps up to the area of the house where our bedroom, both bathrooms, and the laundry room is, everything is very accessible. As long as a plan is in place, I feel in control.
Ron saw his eye doctor and had two ECP treatments this week. They decreased the medrol infusion dose which he has every two weeks, from 80 to 60. I can tell that he is way less hyper. Before he was almost manic for two days, especially wanting to shop..and then he would crash and sleep two days.
Ron's vision for reading is slightly worse, but he doesn't need new glasses yet. Because his eye glands do not function well, in addition to steroid eye drops, Refresh Plus eyedrops, we are now also using eyelid wipes. If the dryness persists even as humidity in the house improves, the next step will be a serum eyedrop. It is made with his own blood as an ingredient. We would get a 4-6 month supply made at a time, keeping it frozen until use...must come in individual vials like we use now. More Star Wars.
We are still enjoying basketball. GO BIG TEN! ---especially Michigan State.

Retreat on a military base

This picture from the area of Matt and Kate's home on MacDill AFB brought back many memories! Retreat is a work day ceremony at military bases. It signals the end of the work day with canon fire and music "Retreat". Everyone pauses and turns to face the flag or the sound of the music, knowing that the flag is being lowered for the day even if you are not able to see it. It is a time to display respect, your dedication to the flag, our country, and sacrifices that have been made. If you are in your car, you stop, get out and face Retreat. In this picture you see neighborhood children, including our grandchildren, pause their play for Retreat. AWESOME!

Some things don't change.

Although many things have changed, Ron continues to have a patriotic heart. He taped a small American flag on the wall next to his chair.
We are enjoying the NCAA basketball tournament and have filled out brackets. He also continues to buy lottery tickets. The difference is that he does not go back and check things. I have a big envelope of lottery tickets that I need to check on the IPad apps. Michigan and Indiana. Maybe we are big winners!
Unbelievably, it snowed again last night but will not last long. We are seeing a very slow shift to spring.

I am going to have arthroscopic knee surgery at the end of April. Until then, I continue to ice and elevate part of the day and am wearing a knee brace to keep my knee stable. 24-7. Wearing it actually feels good, and I do not have too much discomfort; this is a major inconvenience though! I am still adjusting from running my own life to hanging on for the ride.

Love, Ron & Jan

Not making this stuff up..

I really do need to plan an "all about Jan day". I am not asking that much; just wanted to go to the doctor to see what to do about my knee injury. So we are slammed with yet another snowstorm, and I had to cancel Rick coming to stay with Ron and the appointment. All schools are closed, and the storm will persist for a couple more hours...then -3 degrees tonight. Unbelievable! I rescheduled as soon as possible - March 31- but the doc called me, and she will see me Monday. More rest, elevation, icing. I do not have much discomfort.
I drove into Coldwater yesterday to pick up a copy of the MRI because I saw (of course, because I am a weather freak) that a winter storm was predicted. I do have two meniscus tears and water on my knee if I interpreted the results correctly. I do NOT have torn ligaments or tendons, so that was great news! That is it in a nutshell.
Ron's IVIG infusion went smoothly on Monday; it took 5 hours, and his immunity should be bumped up well. The pattern has been that he needs this infusion every two months. Both of us enjoyed visiting with Kirk, a family friend, who drove for us on Monday.
Love to all,
Jan

Living the Dream...

Our circumstances were really never a thought when we prepared for our retirement years. Who could have imagined? I had wondered how many good years we would have at our dream location, thinking it would be at least 10 more years and maybe longer. Ron was 59 when we retired and so young and active for his years. His first diagnosis of acute myeloid leukemia was less than two years later. So this dream has ended, and it is time to start in the very beginning stages of "what's next?" It is almost 4 years since Ron first started treatment.
It would make sense to find a place to live back in Bowling Green. Perhaps a good starting point would be a small apartment while a more permanent arrangement is figured out. We would keep our Gilead Lake home at first. Moving from this home feels overwhelming, and I would still like for us to have a small summer cottage. There's no crystal ball, and so much to think through. At this point, travel to somewhere warmer for a part of the winter is not possible due to Ron's medical needs which are met at U of M Hospitals. Even this thought process is a major project!!!
Meanwhile, my knee has continued to improve even though it is not right, and I had my MRI last night. Waiting for results. I am not using the crutches and can do what is needed here at home. Ron and I went to Angola and did some grocery shopping. I am putting my feet up more and still icing periodically. It doesn't feel like a big deal now.

Ron has had one of his sleepy days. His immunity is very low again, and he will have an infusion to boost it up next week. It will be a day trip, and a family friend is driving us, and I am talking way back to the 1950s for Ron and the 60s for me! See: I am starting to learn how to ask for help!
We are seeing the deer and turkeys in our yard every day. I love how nature surrounds us here and can hardly wait for the first signs of spring. A slight warm up is predicted during the next week. In the last two months we have only had 2 days where the high was above 32 degrees, many sub zero and one digit lows with ridiculous wind chills. Can you tell that I am tired of winter?!
Love,
Ron & Jan

Changing Things Up...

But not in a good way. Ron had his light treatments this week, and on the day of the first treatment, I stepped into his cubicle to hand him the bag he carries. He was already wrapped in his warm blankets as he sat in the chair. I thought I was stepping on the edge of the blanket, but I stepped on his foot, and instead of twisting my ankle, I twisted my bum knee. The nurses helped me to the adjacent chair and brought an ice pack. After an hour, I could still not bear any weight on it and had to go to the ER. Unbelievable!
The nurses pushed me to the parking garage, we got our car, and drove around to the ER, so I would have the car when discharged. They brought Ron to the ER in a wheelchair when his treatment was over. I probably have a miniscus tear since this has been an ongoing discomfort, and Wednesday's twist aggravated it. I have an MRI Tuesday in Coldwater. They were going to put an immobilizer on my leg, but it told them I had to be able to drive, so it was wrapped, and I have my first ever crutches. Cale came to the rescue early the next morning to take his dad to the second treatment while I elevated and iced my knee as I made my appointments back home for the MRI and orthopedic doc.
The knee is MUCH better, and I am being very careful...such a helpless feeling to not be able to walk. I will probably require some type of procedure. I am learning to ask for help. I really wanted to do it all. Anne and George were at the house to help us unpack and brought dinner and lunch for last night and today. Tammy is sending food and some groceries with Rick when he comes tomorrow. We will have everything we need as we await another winter storm. It was -8 degrees this morning. I am using one crutch now and can bear weight on my left leg but can tell my knee is not right.
Ron saw the PA Wednesday. His skin changes are not a new flare, and the blood test that can indicate a flare occurring was 0.0. That was such good news. The last thing the PA said was, Jan, you need to go to a doctor for your knee. Then I twisted it about 15 minutes later. Ron is stable at this point. It is good news when we have no new issues.
When the valet rolled both of us out to the car when we left the ER, he said You're together?? I said yes, just put me in the driver's seat, please. At a rest stop on the way home the next day a woman held the door for us, and she also asked, are you two together?? People are so kind to us..strangers as well as family and friends. We will soon have been on this journey four years. Ron first started to have some sickness in March 2010.
Hope this winter winds down in March; it is going to come in like a lion. Even the 20s with no wind feels warm! That is just wrong.

Take 2

I am trying this again. I wanted to reflect on who Ron is now and struggled through my words last evening---then the page was stuck in the saving mode, and most of my entry was lost. Depressing.
Ron seems to be at a plateau in his recovery. I don't mean to sound like I've lost hope, but I don't feel like he is going to be able to recover further on a physical or mental level. GVHD is wicked, and again he is walking the tightrope between medications and his immune system attacking his body. To keep the immune system so repressed that it doesn't attack yourself there is no immunity for other invaders. So that is covered by numerous types of antibiotics, anti viral, and antifungal medication. Ron's steroids (prednisone) was tapered two weeks ago from 20 to 15 mg daily. He also has an infusion of steroids during each of our visits to AA for Photopheresis light therapy treatments.
Ron walks with a cane, exerts a lot of energy to get up steps, and is very fatigued after any physical activity. He sleeps 10-15 hours a day and is most bothered by the itching and skin changes on his back. He takes atarax and oxycodone to control the discomfort, and we apply sarna lotion several times a day. He cannot take Tylenol because it affects his liver.
Since the last taper, I had noticed some skin changes which the ECP nurse also noticed, so she felt the PA should see him. Now he is also using a steroid cream on a new area of outbreak, but nothing else was changed, and hopefully with the accumulative effect of the treatments and steroid infusion, it will be controlled. If not, his prednisone will be increased in two weeks. The tightrope.
Ron's persona is very different than before the transplant. He truly doesn't seem to comprehend the changes, or the oddities in his behavior. In many ways he is still Ron; he is still my valentine.

At a Plateau...

Ron seems to have come back as far as he is going to from his pneumonia in November. He no longer has a nurse who visits us at home, and he is also discharged from home PT. He doesn't want to go to out patient PT. We continue to go to U of M every other week to have treatments to control the GVHD ...... At this point I continued to bare my heart about my valentine, only to have a glitch in saving fail to save it! :-(
Don't think I can type those thoughts again.

Abby Holding Lily (1 month old)