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)

Snow and Deer

You can see the hoe next to the crabapple tree. I hook it on branches and shake down apples for the deer to eat. The picture from the front door during the storm was taken this morning. Our plowing service has cleared the walk and driveways.

Decided NOT to talk about the weather...but oh, my. It brings out a need to make soup.
We traveled to Ann Arbor for 4 days last week. Ron had a pulmonary function test on Monday, and we met with his pulmonary doctor. His lung issues are stable, and the pneumonia has resolved, but he has permanent lung damage which does make him susceptible to more lung infections. She changed him to Spiriva which you have probably heard advertised on TV. That replaces one of the inhalers, and he continues to take Advair and an antibiotic specifically for his lungs.
On Tuesday we had planned a day trip since no appointments, but it was so cold that we stayed in AA. The University of Michigan and Eastern cancelled classes...first time since 1978. On Wednesday and Thursday Ron had two ECP treatments. Because his bloodwork and previous CT scan of his lungs were improved, his steroid prednisone was tapered from 20 to 15 mg daily. So that is a step in the right direction. His physical therapist is coming to our house tomorrow and will probably discharge him from services at home. It is hard for him to muster the energy to do his exercises. That is so unlike the old Ron who ran 1000 miles a year, was an avid golfer, and sports official. Chronic graft versus host disease has ravaged his body in a variety of ways. I am thankful that this doesn't seem to bother him.
The deer have been regularly coming into our yard to eat apples and the pine trees. I will post a couple pictures. I keep a hoe by the crabapple tree, so I can shake the branches. We watched deer in the yard for over half an hour yesterday at the end of the afternoon. Two came across the road and were less than 20 feet from our windows.
Ron & Jan

These are "Before Pictures".

Snowplowing has left many areas of high snow next to the road. Yesterday the roadways were quite clear; the picture was taken on my drive into Orland for a newspaper, bottled water, and a few groceries. The snow that has been plowed off the driveway that leads to our garage keeps getting higher!! It is snowing hard this morning. January was a winter month to remember, and February is off with a bang.