January 31, 2012: Day #160 after transplant

This has been a long month. I think that is for a combination of reasons. I remember when I was still teaching that I always felt that it was such a productive month coming off winter break and with fewer distractions. (when the weather didn't cause too many interruptions!) The sameness of the days of this month has been both welcomed and the reason for January dragging by. Grinding. Fewer distractions which is a good thing!

My sister and brother (and spouses) continue to take turns making weekly visits to check on us, bring our mail from home, and transport things back and forth from home. We are very close; from our family of 6, it has just been the three of us for over 30 years now. The weather has cooperated; it has been an uneventful winter, so that brings us hope for an early spring. As I read back over this, I think I have some symptoms of cabin fever:)

What's next? Tomorrow is Ron's regular appointment day. I am quite sure that they will taper his steroids this week. I will take my usual list of questions concerning the status of his skin, his fatigue, what his blood tests indicate, our projected departure from Ann Arbor, and the battery of six month tests that he will have in February. I am anticipating this month to pass more quickly.
I will report back tomorrow or Thursday. Hopefully, our timeline for our return home will be more definite.
Love, Ron & Jan

Counting the Days Until Spring

Our deck overlooking the lake will be even more appealing to us when spring arrives this year.

The birdhouse is setting on a picnic table on the open deck. It blew out of the redbud tree but didn't make its way into my garden shed.

Extracorporeal Photopheresis ECP: light therapy

Ron had an ECP treatment yesterday afternoon. He has one more scheduled in a month. The ECP Clinic is now housed in the new hospital on 8th floor directly above the BMT Clinic. These treatments are a result of a study that Ron is a part of. ECP helps to bring harmony to the immune system; his new immune system, which is a result of the bone marrow transplant, caused graft versus host disease affecting his skin primarily and early on, his digestive system. Studies have shown that patients who have GVHD have lower percentage of relapse of leukemia, so a little GVHD is good. Ron has had more than "a little." it is believed that not only is the immune system attacking the host but also any remaining leukemia cells. Eventually, the body accepts the new immune system and GVHD resolves. Ron is getting closer to this point as he is weaned off steroids and immuno-suppressant meds.
We are planning our next overnight trip from Ann Arbor! We are going to my sister's for the Super Bowl. They live about 2 hours from Ann Arbor. It is exciting making plans to be near home; we only live about 10 minutes apart. We will drop off some items that we are no longer using here and check the house and yard. We only plan to be gone about 24 hours. I can give Ron his IVs before we go Sunday and after we return on Monday. I am just hoping that the snow we have seen so little of this warm winter will not arrive to spoil our plans.
This will be a quiet day. As a result of the treatment and having spent several hours at the hospital, Ron always sleeps even more on the day after ECP. (Plus we just had to watch the Buckeyes game and then the Spartans get Izzo's 400th win.)
Love, Ron & Jan

New Bone Marrow Transplant Clinic & Inpatient Hospital

This article is from the winter issue of "Thrive", a periodical published by the Cancer Center at U of M Medical Center. It refers to the clinic that Ron goes to now for his appointments as well as the inpatient hospital rooms for BMT patients- adult and pediatric.

http://www.cancer.med.umich.edu/thriveonline/change-of-address.html

I am doubting that it will work as a link, but you could type the address of the website into your browser. (I hope that I am saying that correctly:)

Jan

January 21, 2012: Day #150

Can you believe it has been 150 days since Ron's transplant...and we still live in Ann Arbor? Because Ron had responded well to the first six rounds of chemotherapy in 2010 and 2011 and all of the discharges were possible within the minimum days expected, we had expected the 7th round of chemo and the transplant to go more smoothly than it has. 100 days was the minimum goal, and we had thought that we would be back home after the 4 months total-- 100 days after transplant. (early or mid-December) we continue to be optimistic that Ron will be discharged to return home soon after Day #180. He will have his 6 month anniversary tests (as they call it) and an appointment with the head physician of the BMT team at the end of February.
Things are definitely moving ahead; Ron does not seem to be weaker since the last two times his steroids dose was lowered. He continues to be fatigued and needs assistance walking but is not worse. This is "moving ahead" because he is maintaining while his steroids (medrol) are lowered. He took 96mg each day in September; now he takes 4mg. This is truly grinding at this point. It is hard to understand how the drama of past events fueled me to be able to have the stamina I needed to get through the bad days we had. I am so glad that I have the focus again that you need to be able to read books because with much less time at the clinic and more at the apartment, reading has been a great pastime...especially the last 3 weeks. Both of us are beginning to look ahead more and not living so much in the moment. We are mapping out our last weeks here in Ann Arbor and talking about spring gardening, getting a new dock for the pontoon, riding in a golf cart, and taking trips to visit the kids. It feels really good to be planning our return to normal life.
Love, Ron & Jan

Valley Ranch Apartments: Our Ann Arbor Home

If Ohio State had won the football game this year, it would have been great to switch out that Michigan flag:) Maybe there will be a Big Ten basketball opportunity.

Doctor Day: Wednesday, January, 18, 2012

Wednesday continues to be our regular appointment day at the Bone Marrow Transplant Clinic on 7th floor of the new Mott's Children's and Women's Hospital. Next Wednesday is Ron's last ECP light therapy that was scheduled as a part of the study in which he is a participant. He could possibly have additional treatments scheduled if needed to treat his skin. The treatments work by drawing out blood through his port, spinning it to separate white blood cells which are treated with a drug and then ultra violet light before returning it to the bloodstream. The drawing out of blood and collecting the white blood cells while returning the other part of the blood back through another lumen takes about 2 hours.

His port has 3 lumens, so when I give him his 2 IVs at home, they can be done at the same time through two of the lumens. Ron will have the port removed some time in February and transition to oral meds for the ones he receives intravenously. For several weeks now, we have not had a nurse come to the apartment. Nurse Jan has learned to take care of Ron's medical needs and has new appreciation for caregivers everywhere who do the same and much, much more for a loved one.

Today his steroids dose was lowered again. Yeah!! He uses either his walker or cane for walking but relies on the walker when outside the apartment. Today's appointment also involved talking about the tests he will have in February before we move home, including another bone marrow biopsy, GVHD evaluation, and lung function test. Everything feels positive at this point.

Weekend: January 15, 2012

We've had a few inches of snow, breezy during the storm, and cold temps, so it looks and feels like January. Cale, Jess, and the kids visited yesterday, so we went sledding on the hills directly behind our apartment building. So much fun to see them enjoy the activity outside, and sledding conditions were good.
Ron is grinding, but we look back at times and think about the situations we have made it through and are so grateful that his recovery has become more settled. He does his exercises every other day..as the physical therapist had instructed him during her sessions. It will be nice when we can walk outside again.
We continue with precautions regarding Ron's low immunity. I have used more chlorox wipes and chlorox any hard surface spray in the past months than the rest of my life. He continues to wear a mask when out in the public, and has some restrictions on what he can eat. We cannot eat in restaurants yet. His weight is staying around 153 now. Because he had graft versus host disease of the gut, his digestion, absorption of food, and digestive comfort continue to be an issue at times. His GVHD of the skin will also remain an issue at times, but all of this is manageable.
Ron & Jan

January 6-11, 2011: Day #140 after transplant

No real good excuse or problems that have prevented me from blogging! Today was Ron's regular weekly appointment at the BMT Clinic. Usually, it is very quiet in this new clinic in the new Mott Hospital, but today the number of patients and noise level was higher. There had been flooding from a broken water main in the Cancer Center where Ron used to have his appointments, so many of their cancer patients and their staff were using "our clinic". We continue to use the pharmacy there because of established rapport with the pharmacists and how closely and well they communicate with the BMT Clinic, so now we are temporarily using the hospital pharmacy. (but our pharmacists had moved too. Guess it is quite the mess and water damaged.)

Ron had a good appointment today. The doc lowered his steroid dose again after two weeks. The decrease had left him more fatigued and not as steady, but those symptoms were improving, so he moves forward. There were no surprises in his bloodwork, so all in all, a good appointment. Tapering the steroids at this stage can be slower but we are hopeful that at next Wednesday's appointment they will be able to taper again. I had been worried about changes in his skin the past two weeks with increased blotching and redness, but the doc said that he does not have chronic GVHD but residual skin changes from the acute GVHD. That was such a relief! Dr. Magenau, Tim PA, and Maria RN are so thorough with Ron's care and explaining everything to us. They're an awesome team.

Now that I think back, I have been busy... watching football and college basket ball games until all hours and reading The Girl with the Dragon Tatoo and its two sequels. I love reading on the IPad. I think I might go with something lighter for my next book choice. I have also started working on my new year and thank you correspondence. I only made one new year resolution: dirty dishes go directly into the dishwasher. (no dirty dishes collecting in the sink!). Hope your new year is off to a good start and you're sticking to those new year resolutions.
Love to all, Ron & Jan

Pictures from Home: Gilead Lake

I had hoped the sun would come out, so my snowy pictures would be prettier. These were taken on January 2, 2012 while we were home for 3 days. The picture of the house is from the lake side, and the garage and garden are on our acre lot across the road from the house. We are indebted to family for taking care of our yard, gardens, and house while we have been living in Ann Arbor. I hope that we will be home to do the first yard-mowing! (So do they..especially George! :)

Two More Months

We ended up only having about 4 inches of snow at the lake, so a beautiful winter day was the result of the storm with no problems traveling back to Ann Arbor on Tuesday, January 3. It has made me remember how happy I was to only have one home to worry about and take care of when we retired and moved full time to Gilead Lake in June 2008. Ron and I have both referred to our apartment in AA as "home". We have lived here almost 5 months now, and the doc told us yesterday that we need to live here 2 more months.

The bone marrow transplant has "taken" well, and Ron's bloodcounts continue to improve now that he is off the antiviral med, valcyte. It was needed to fight the two viruses he had but was hard on the marrow. The doc did not decrease his steroid meds this week because Ron's body has not yet adjusted to the last decrease. He has been more tired and weaker and is not able to walk with his cane. His body's own mechanism to produce steroids is recovering too. This will all happen with time --- on its own schedule. Slower than we had hoped for but still moving forward... We are now looking at early March to move home.

With the worry I felt when I heard the winter storm warning at Gilead Lake, I understood the need to be close to Ron's medical team here at U of M Hospital. The two hour drive between "homes" could be much more or impossible during a winter storm. So two more months is doable, and we are not missing spring or summer days at the lake. The yard and gardens (and golf courses) are having their winter sleep. We should be able to enjoy all again in 2012. Ron brought his putter back with him and will soon be putting into a cup to work on balance.

Happy New Year!

Ron and I had decided several days ago that we would make a trip home to Gilead Lake over New Years Eve. The weather and other aspects seemed to fall into place, so by December 30 I was packing and figuring out which medical supplies to bring including IV pole and his 2 infusions that he requires each day. He continues to take several pills, a liquid med, and uses skin lotions as needed. It was also an opportunity to bring a load of items home to leave.

When running to Meijer Saturday morning for our new years groceries, including pork loin and sauerkraut for good luck, my tire pressure light came on. When I checked the tires at the store, I saw that the front right tire was quite low. You have got to be kidding me!!! There was a nail in the tire, so I could only be thankful that I had it repaired before we left and did not have a flat on the expressway. It only put us 30 minutes behind schedule. The trip went smoothly; I can drive it in a little under 2 hours if traveling by the expressway.

On New Years Day a winter storm watch, then a winter storm warning popped up out of the blue. You have got to be kidding me!!! 4-8 inches of snow with a 40mph wind was predicted for our home county, ending by 7:00 Tuesday morning. We have about 2 inches now, and of course, we are hoping for a downgrade in the prediction. The plans have been to go back to Ann Arbor Tuesday morning but we can really leave at anytime tomorrow. Ron's first appointment is at 7:30 Wednesday morning. The last reduction in steroids has made him noticeably weaker, and he is back on the walker. He needs help going up the 3 steps inside our home. We continue to feel like he is moving ahead, and his body needs to produce more steroids for him as he is weaned off steroid medication. This is the goal required to be able to move back home.
We are looking forward to the bowl games today and will try to ignore the storm. I have bought my Yaktrax and put them on my old garden Merrills. We are contracted for snow removal of our driveway, so now we just wait, and we will leave tomorrow when it is safe to travel.