Day #188 after transplant: February 28, 2012

I was hoping for some definitive answers/ predictions for Ron's treatment of chronic graft versus host disease. But that is not the name of this game. Each patient is unique in his response to the transplant, his complications, and his response to treatment. Today was an information gathering session for the GVHD Clinic doc who is also the director of the BMT Clinic. He was Ron's inpatient doc when he was first hospitalized for acute GVHD in September.
During the appointment a few baseline tests were done to rate lung function, range of motion, and walking. (He uses the walker.) A written survey was done regarding symptoms, and the doc did a physical exam. Due to issues in Ron's mouth and hyper pigmentation of his skin, his GVHD is called lichenoid chronic GVHD. He has an appointment tomorrow with his regular doctor and PA. His next appointment in the GVHD Clinic is in six weeks. This doctor is the GVHD specialist and consults with Ron's regular BMT doc. We were told that it would be at least 2-3 weeks more until we can go home, so we know that means at least 3 weeks. Ron does not feel like he is quite ready to go home yet. We feel a great amount of safety by being so close to U of M Hospital, and with the need for frequent appointments, it makes sense to continue living here. When Ron only requires appointments every other week, we will be on our way.
So here we are, and we are doing okay. It is amazing how quickly you can adjust to ever-changing circumstances although I would have to admit that you feel a little beat down at times. We just want to go home but understand why we must wait a few more weeks.
Love and thanks to all for your positive thoughts and support, Ron & Jan

Friday, February 24, 2012

Ron had his six month eye exam which is a part of one of the studies in which he is a participant. It is a study to test if eye drops with steroids benefit the patient by reducing dryness which can be a side effect of BMT patients especially those with GVHD. It is an eye exam with several tests, one which attaches little bags to catch any tears that are generated. His vision and tear production have only very minimal changes, so more good news.
Ron seems to feel a little better today. He is back on IV fluids at home, and I have devised a method to track fluid and calorie intake. Things had declined rather quickly when he had his skin flare-up and change-over from IV meds to pill form during the last two weeks. We have had to use a wheelchair again at his appointments.
Tomorrow is Ron's mother's 91st birthday. She is coming to visit tomorrow with Rick, and we may try to go out to a restaurant. We have not been able to do that since August. Zingerman's is an awesome bake shop near us, so I will pick up a small cake and ice cream to have here at the apartment. Happy Birthday, GG!!!

Doctor Day: Wednesday, February 22, 2012

The roller coaster ride continues. This has turned into a long doctor day. Ron had his six month post transplant pulmonary function test first, and the results show that his lung function is not declining. He is not a fan of a test that clamps his nose tightly shut, but happy for the good results. More good results!!! His bone marrow biopsy from last week showed no leukemia, so he is still in remission. His new bone marrow is working well, but the ups and downs of the GVHD are disheartening at times. They considered admitting him today but are giving him IV fluids during his ECP light therapy because he is dehydrated. Hopefully, that will perk him up some. He has lost 8 more pounds in the last two weeks. 146.5 pounds, down from 211 in May 2011. A stomach scope has been ordered to check for GVHD issues in the gut. As the nurse said, we need to get this train turned around again.
I am tired today. I didn't sleep much last night as I was thinking about the biopsy and Ron's weight loss and weakness. I am glad that there will not be IVs yet to do when we get back to the apartment. He may need more IV hydration at home. Next Tuesday Ron has his appointment with the GVHD Clinic, so perhaps then we will have a better idea for the course of action needed to fully recover.

February 18, 2012

Friday's bone marrow biopsy went smoothly; the procedure rooms in the new clinic are amazing. This was the first one that Ron had done under sedation. In the past he has always just had a local. They actually remove a small core of bone and bone marrow to biopsy, and we should know the results on doctor day next Wednesday. This was his six month anniversary biopsy and is a routine test. He has other six month tests scheduled next week and will have his last ECP light therapy of the study he has been a part of. It is possible that he will continue with ECP after the study because of the graft versus host disease. The flare-up of his skin has improved over the last 5 days. He had had a downturn in stamina along with it, but he seems to be regaining some strength today. We always hope each stumbling block will be the last downturn. All in all, he is greatly improved from the weeks when the two viruses were active, and we continue to make plans to go home in early March. We know that will be an adjustment for us...so joyful yet some anxiety about being two hours away from the safety net of Ron's medical care at the University of Michigan Hospital.

February 15, 2012: Six Months in Ann Arbor

We both felt reassured after seeing the doc today. Ron's skin had flared up on Monday, and he just didn't feel well, so additional blood tests were done today to check for an infection even though he does not have a fever. He had felt weaker again during the last week, so it was decided to change his steroid from Medrol to hydrocortisone (which hopefully will raise his energy level too). They work differently but both are steroids. He has an adrenal insufficiency, so this change might help stimulate his body to produce steroids. His skin flare-up was controlled again with prescribed ointments, and that just might be something that we have to deal with for awhile. His immune system is stubborn about "playing nice" with his body, but the doc reassured us that they think this will eventually happen...just not as fast as we want it to. So we move ahead.
The big news is that the doc changed him totally to pill meds today. No more IVs!!! After his last ECP light therapy treatment next Wednesday where they use the port to circulate blood out to collect white blood cells in a centrifuge--then send the cells back after they are treated, he will have a procedure to remove the central line. After that he will have to be poked again for blood tests; that is the down side. Ron's sedated bone marrow biopsy and bloodtests are still scheduled for Friday. Things continue to be in order for moving home in early March.
We moved to Ann Arbor six months ago today. Hopefully, we have just paid our last month's rent on this totally furnished apartment. It has been such a great arrangement for us. There was no lease, and after the first month, you are only required to give two weeks notice.
Love to all, Ron & Jan

Happy Valentine's Day 2012!

Happy Valentine's Day to my special sweethearts: Cole, William, Anna, Joey, Sarah, Jack, Abby, and Allison! (Ages 10 down to 3 years)

It is a beautiful day with peaceful snowfall and cold February temperatures. This is one reason why we chose Michigan for our retirement. There are many reasons:)











Ron is still sleeping this morning. He usually gets up around 11:00; yesterday I called the clinic as I was concerned with his skin, weakness, and weight. I didn't think he should wait until next Wednesday to have an appointment with his doctor, so he has bloodtests and an appointment tomorrow, Wed. Feb. 15. His bone marrow biopsy is still scheduled for Friday. It is really hard to know when to call with questions, so I decided to just go with my gut. The clinic nurses are so reassuring and helpful when I call which has not been very often. I am hoping that Ron's oncologist in Coldwater (near home) will be able to handle any issues after we move home.

I did discover another household remedy yesterday. I have my favorite sweatshirt here. It was one that I bought for Cale for Christmas in 1995 and has Ohio Northern embroidered on it. Soon after I had purchased it, he decided to go to Ohio State. It had 3 stains on it, and I had not brought any prewash with me. However, I had bought some Resolve for the carpet since we have been here, so I tried spraying the stains with Resolve and washing it after about a 10 minute wait. It worked! Ah, how the little things can make a happy moment!

Have a special day with your special sweethearts and again thanks for your support in so many ways.
Love, Ron & Jan

Blue Thunder

This 6th round of chemotherapy was administered in July 2011. Yes, it is Michigan blue. It brought Ron back to his 2nd remission from acute myeloid leukemia and made the transplant possible in August 2011. We continue to live in Ann Arbor but hope to return to Gilead Lake in about 3-4 weeks. The blog entry below summarizes our journey.

February 11: Winter Returns

I bought a four pack of the original Mr. Clean magic eraser cleaning pads. So I have been erasing all the scuff marks on the walls and door jams of the apartment. Then I followed up with using white out (since I don't have any paint) to cover places where the paint was chipped. I think this behavior qualifies as symptoms of cabin fever. I continue to read A LOT and made soup today. It is so much brighter outside today with the snow cover. It seems like winter with the snow and cold temps.

(A Look Back) When we came to Ann Arbor in February a year ago for Ron's quarterly check up, there were huge banks of snow. That was his last check up during his remission from acute myeloid leukemia. At the following May appointment we learned the AML had relapsed, and knew that the next course of treatment would be his bone marrow transplant if he could be brought back to remission with more chemotherapy. During last summer, he had two rounds of chemotherapy in June and July while hospitalized at the University of Michigan Hospital. That seems like a lifetime ago. His second round of chemo was called blue thunder..U of M blue which did bring him to remission. The next step was the transplant in August which immediately followed one last round of chemo which destroyed his own marrow. I think about how far he has come and all that he has had to endure during the last 10 months; the nine months of remission seem like a dream.

What will the approaching spring and summer bring? We had hoped to return home with Ron on minimal medication and steadily gaining strength and weight. By early March we continue to plan to return home, but we know that chronic graft versus host disease will be an issue. He will continue to take immune suppressant medication which will keep the cGVHD under control but at the same time reduces his body's immunity to viral, fungal, and bacterial infections. cGVHD can be mild and controlled with minimal meds, so that is the plan at this point. Ron has an appointment with the GVHD Clinic February 28, so we have to wait awhile to have more specific information.

It feels like we are moving into another block of time regarding Ron's recovery.
The 1st block was following his original diagnosis of leukemia on March 30, 2010; it lasted about 5 months until the first 4 rounds of chemotherapy moved him into his first remission.
The 2nd block was his 9 month remission.
The 3rd block was relapse and his two rounds of chemo to bring him into 2nd remssion; this block lasted 3 months.
The 4th block was the transplant and recovery in Ann Arbor which has lasted almost 6 months. It was/is such a rough time with acute GVHD and two stubborn viruses; no viruses now.
This 5th block is/will be the recovery continues after 6 months,a few more weeks in AA, returning home, and living with chronic graft versus host disease. So many questions now...

Wednesday (doctor day). February 8, 2012

There is good news and bad news today. The skin symptoms and mouth symptoms do appear to be chronic GVHD (graft versus host disease) which is noted as cGVHD. For the future that means a continued regimen of medications to ward off any infections whether fungal, viral, or bacterial. It also means that he will continue to need immune suppressant meds to control the cGVHD. He will be seeing a doctor in the GVHD Clinic on February 28 who specializes in this complication. Ron is taking this all in stride and seems very accepting, but it was the first day that I felt like crying for a long time. I had wondered if that part of my emotional self had just dried up.

There is good news, and I wanted to end today's blog entry on that. That is my overall mental strategy: focus on what is good and positive. We are much closer to the conclusion of the 2 daily IVs that Ron has required since September when he was discharged from the hospital after the transplant. The anti-fungal IV was changed today to pill form and the other IV is half dose in pill form and the IV is halved. After his last ECP light therapy on the 22nd, his IVs should totally be in pill form, and he will no longer need the port. For whatever reason, I have always called it a port or neostar interchangeably, but today I learned that it is really called a line or neostar. (today's trivia)

We should still be on track to move home in early March. Ron's doctor day is Friday instead of Wednesday next week; he will have his six month bone marrow biopsy. His last one was painful, so he is going to have this 8th one done under sedation. I don't know if I have mentioned that after a year he will have to have all of his childhood immunizations again. We are looking ahead and feel like we are moving ahead although they could not lower his steroid dose again this week. The doc said everything will have to go very slowly now due to the cGVHD. We are doing okay.
Love, Ron & Jan

Super Bowl Weekend at Wall Lake: Feb. 5-6, 2012

Our Super Bowl weekend was Sunday-Monday. What a great visit to my sister's home! (Anne & George) and what a great game! The Troxells were there as well, and although things were much tamer than they used to be, we had a fun get-together. Good food, good times. As you may remember, Anne & George are keeping our kitty, Blue, while we live in Ann Arbor. Lucky for Blue Boy that they spoil him as much as I do. He did remember us and was his lovey, needy self.
After 3 days back on steroid cream and increasing the immune-suppressant dosage, Ron's skin started to show improvement. That was quite a relief for both of us. They have not yet diagnosed him with chronic graft versus host disease, but that is always a concern for us. I am writing this at Gilead Lake while Ron naps. We brought a load of things home and will stop by the post office on our way back to Ann Arbor. We know that it is not quite time to move home permanently, and we are accepting of that. That is the next phase of his recovery, and we really don't know what the follow-up care will be. He will not need platelet or blood transfusions at our local cancer center because his new bone marrow is doing well. His body needs to learn to be more accepting of his new blood cells. Overall, things going well and feel like we are moving ahead again.

A New Month! February 1, 2012

Treading water. I had had concerns about Ron's skin, especially the last 3 weeks. Today I asked the PA to ask Ron to take his shirts off, so he could have a good look at his torso. Usually, they just have him pull his shirts up, but I wanted him to see his shoulders and upper back and chest. They had taken him off the steroid cream and just had me put eucerin moisturizer on him the last two weeks. His skin had looked redder, darker, and more rashy to me. So, we tread water with no tapering of steroid pills or immunosuppressant meds. He is back on the steroid cream twice a day and goes back next week to have it checked. His blood tests remain good. The issue remains the GVHD which affects his skin. It is his body's (skin's) reaction to the new immune system. His new bone marrow is producing blood cells, so his blood counts (red and white blood cells and platelets) are doing well, but his skin continues to recognize them as "not his own".

We continue to be on track to move home in early March. Next month!!! Once Ron doesn't require weekly appointments and meds are tapered more, we can stop living in Ann Arbor. We certainly didn't expect to be here for the Wolverine football AND basketball seasons! At this point the concern about moving outside the one hour radius from the hospital would be if something would happen at the same time as a winter storm that made traveling bad. In good weather it is about a two hour drive.

The clinic just called with his blood test result that measures the level of his immune drug, tacro, in his blood. It is running low, so they are upping the dose, and that should help his skin. All of this was a bit disappointing today, and Ron called it not a good day, but it is not a devastating setback. The success of the transplant itself is good news everyday, and we are on track to be home in March. Treading.