The Weekend: March 29-31, 2012

Ron is in his Buckeyes shirt, and we are warming up by watching Louisville vs Kentucky. He is still in the hospital and will be for 2-3 more days. The variance in his blood pressures from lying down to sitting to standing remains significant. He was given several liters of fluid over the first 2 days to see if dehydration was causing it. He is back to one liter a day ..the same as I was giving him daily at the apartment. The cause was not dehydration; it is called orthostatic hypotension, and tests are being done to find the underlying cause, so it can be treated. Usually, a person who has low blood pressure when standing complains of dizziness. Ron had been saying for sometime that he felt very weak on his feet, so we thought it had to do with his weakened muscles. An endocrinologist team is running tests on his adrenal gland function. His blood pressure drops about 50 on the top number and 25 on the bottom number from lying down to standing.
Regardless of the cause, Ron needs intensive physical therapy. He will get this service at an Ann Arbor skilled nursing facility. They will work on his rehabilitation, and the Bone Marrow Transplant doc will work on the medical part of his recovery. We will learn much more about how this will be facilitated on Monday and Tuesday. His rehabilitation will be about 2 weeks. Again, we are hopeful that this coordinated plan will all come together. The doc in charge of this hospitalization has been Dr. Bixby, Ron's leukemia doctor starting 2 years ago when he was first diagnosed with AML.
We will be living in Ann Arbor at least 3 more weeks...we will set a new target date after next week.

March 28-29, 2012

Sometimes you just don't know where to begin, so here goes. Ron is back in the hospital after falling in our bathroom at 4:30 A.M. Wednesday morning. He did not break anything but has some bumps and bruises. His blood pressure varies significantly from lying down, sitting, and standing positions, so he was not able to go home even though all xrays and CT scans were normal. He is very weak and might need some rehab which would give him more intensive physical therapy. He had had difficulty sitting on the side of the bed and changing positions on his own while lying in the bed.
It has been good for him to have a thorough evaluation while being hospitalized. He has had a transfusion of platelets in case there was a bleed as a result of the fall. He has had several liters of hydration in case dehydration played a part in the fall and BP issue. Tomorrow we will know more about what to expect regarding hospitalization and treatment for his symptoms.
As I told Ron, you are never a dull moment.
Jan

Enjoying the NCAA March Madness: Go BUCKS!

Summer to Spring: Life in Ann Arbor

I don't think I took a summer picture of this view from our living area sliding door, but you get the idea: we have been living here a LONG time! As much as I have enjoyed the warm weather, it makes me want to get home even more. I didn't want to miss spring in our gardens. ...should be a lot of time left for that. Two and a half more weeks we hope! Last week's blood tests showed that Ron needs a testosterone patch and great news that the CMV virus is again negative, and he can go back on the less strong antiviral. The physical therapist has been here 4 times now, and at this point, progress looks slow but none the less: progress!

Thursday, March 22, 2012

The roller coaster ride continues.... We are moving up again with the new med and physical therapy. The doc appointment yesterday was encouraging. The stomach scope showed erosions due to all the meds that Ron must take, but he does not have GVHD in his stomach, so that was just outstanding news to hear. The projected plan is to move home April 10 after 3 weeks of physical therapy here and follow up appointments with the symptom management, GVHD, and Bone Marrow Transplant Clinics. I feel hopeful that this plan will bring him to the point where it is safe to go home.

We have been sporadic in checking Ron's email. Please use my gmail address to the right. I will read any messages to him from my phone. Thanks.

Starting a New Phase of Treatment...

Ron and I spent about 2 hours in the Palliative Clinic---sub title Symptom Management Clinic, and it was very helpful and informative, The symptoms that we need assistance with are fatigue, loss of strength, weight loss, and mood. We will return in two weeks to gauge progress related to med change and physical therapy. I received more information and understanding of how to add calories to his diet, and hopefully, the med will help with his energy level which will in turn increase exercise and appetite.
This is an amazing group of clinics to help Ron with his recovery: Bone Marrow Transplant Clinic, Graft Versus Host Disease Clinic, and Symptom Management Clinic. (and physical therapy) Our new goal for going home-- if only for a few days-- is April 10. Until then we will concentrate on this revised regimen to hopefully bring Ron back to where he was physically at Christmas time. Again I feel encouraged and feel like we have a manageable direction to follow. All of our kids are coming to visit in the next 3 weeks, so that will be a boost too.
We know that you are out there supporting us.
Love you guys, Ron & Jan

Thank heaven my sister, Anne, and George have bonded with our kitty, Blue. "Oh,sure, we can take in your cat while you're in Ann Arbor." That was 7 MONTHS ago!!

The weekend: Month #8 begins...

Our goals have been adjusted again. Ron's next appointment in the GVHD Clinic is April 10, and we hope to be able to go home after it. That would give him 3 weeks of physical therapy here in Ann Arbor. Both Niccole and Matt will be in Michigan at that time, and at the least, I hope we will be able to go home April 10-15. If he makes good progress, maybe we will be able to move home. With the springlike weather, we are even more anxious to be at the lake.
We are very much enjoying the NCAA basketball tournament. The Big Ten has made us proud so far. We have 3 entries in pools, so that makes it fun to follow too.
Tomorrow morning we have a 9:00 appointment in the Palliative Clinic; they will give us some coping and management skills for this long term recovery. The first appointment with the physical therapist Friday was excellent. Besides working with and evaluating Ron, she raised his walker handles two notches which makes a huge difference in balance and weight-bearing.
Two years ago we were in Florida, and Ron was quite sick, but he didn't have his leukemia diagnosis until March 30; he was transferred to U of M Hospital by ambulance April 1st...so much has happened since then.

March 15, 2012: AA 7 Months Anniversary

Bloodtests show that Ron's tacro level is down to 9.3--at the high end of the level they want him to keep, so he has resumed this medication at a halved dose. Ron had two stubborn viruses that caused havoc for many weeks starting soon after his transplant. Both had been controlled for the last several weeks, but now the CMV virus has re-emerged. It is not the virus that caused the bladder problems. At this point his antiviral med has been changed back to valcyte, a stronger med. Hopefully, that will be a quick fix. His next bloodtests will be Wednesday, March 21. Ron still has his Neostar port/line, so it is used for all blood tests and IVs. I have learned to give IVs, change his dressing for the port, and change the caps on the lines, and flush the lines daily; he has 3 lines in the port. So we have not had a visiting nurse for a few months.
Tomorrow the new physical therapist will start her home visits. Ron has physical therapy at home because of his low immunity. He has difficulty walking, even with his walker, and no longer can walk with his cane. Yesterday a neighbor helped me get him in the apartment safely after his stomach scope (results by next Wednesday). Today at the hospital I needed help to get him on his feet because he sat down on a seat that did not have arms. Physical therapy will help his quads in his thighs regain strength. He told me that his shoulders were sore; I am pretty sure that the soreness is from pushing himself up on his feet.
Ron is the bravest person I have ever known. This is such a grueling experience and although it would not be truthful to say that we don't feel discouraged at times, he forges ahead doing whatever is medically asked of him. Amazing. And as friend Treeg once said, "Ron, you are a complex man."

March 14, 2012

Ron takes tacrolimus for his immunosuppresant to counteract rejection symptoms. He has blood tests to check the level of this drug in his body. "the tacro test". (sometimes you just have to laugh; spellcheck changed that to "the taco test"). This is one of the drugs that his body will be weaned off as it finally accepts the bone marrow transplant. He had his last setback about 5 weeks ago when that test number dropped to about 4 as they were tapering the tacro. Currently the doc is trying to keep his tacro number 5-10 which is considered a therapeutic level and will prevent another GVHD outbreak. The body absorbs this drug at varying degrees so thus the frequent blood tests. For whatever reason, his count jumped to 24.7 this week, so that is definitely accountable for some of his current symptoms...asking me the same question several times, lethargic at times, spaciness---all which I thought was just a part of his fatigue. I am hoping for a noticeable improvement by Thursday when he has his next blood test. For now he is off the tacro, so that is 9 less pills each day.
When Ron first took tacro soon after his transplant in August, his number jumped to 21. He was still in the hospital and had auditory hallucinations. He was so convincing that he could hear a radio playing, that I thought I was losing my hearing. That resolved quickly as his level dropped, and I was relieved that my hearing was okay.
Ron was up at 6:30 this morning, so he ate peanut butter crackers and toast and had his morning meds. That is very early for him, but he has several restrictions in eating, drinking, and taking meds prior to his stomach scope EGD at 1:45 today. Now he can sleep until 11:30. I call the morning hours before Ron gets up, "my ME time". I am using yoga and Jullian Michaels DVDs to exercise and for stress relief. I also run the dishwasher and washer and dryer during this time. Sometimes I run to get a few groceries (Meijer is about a mile from us.) and the USA Today and Detroit Free Press.
I feel encouraged with having plans for physical therapy for Ron in the apartment and counseling scheduled.
Time to do some yoga,
Jan

March 12-13, 2012

We have had two busy days. Ron had his regular doctor appointment on Monday as well as a zometa infusion to strengthen his bones and a breathing treatment, so we were at the clinic for 6 hours. Ron's skin has improved, his weight is holding steady, his tremors have lessened, but he has had increased fatigue and less strength. Today we went to his eye doctor because he has retained water in his eyes. It looks like blisters on the eye surface. He must keep his head elevated on two pillows when sleeping. It doesn't bother him. He will also be seen at the Palliative Clinic to get assistance in handling any long term issues. How long...we don't know. He is also going to have a physical therapist come 3 times a week to the apartment, so we will be here for awhile yet. We are hopeful that things will improve quickly. The Palliative Clinic will offer counseling to both of us and ideas for improving our situation in regard to chronic symptoms. His symptoms are ones that can resolve with time.
Tomorrow Ron has his stomach scope, and on Thursday he has another blood test scheduled. Thanks for your continued positive thoughts, prayers, and encouragement. We appreciate it so very much.
Love, Ron & Jan

Day #200 after transplant: 3-11-12

Gilead Lake was very welcoming. Spring will be arriving in the next few weeks and hopefully, so will we. Appointments this week should let us know our game plan for the remainder of March. I am still hoping for March 22 as the date we move home. One of our roadside trees had blown down recently. We had called it the "leaner tree" because it leaned quite a bit, so now I am imagining what to choose to plant in its place. Rick reduced it to a small woodpile and large brush pile in an amazingly short amount of time. Our sibs have been amazing!

Home at Gilead Lake: March 7-10, 2012

Very nice to be at home a few days.... Thought I should update everyone! Actually, the doc had suggested that it might be good for us to go home for a few days since Ron only had a blood test this week, so Ron had that done on Tuesday. Cale had come up for a visit, so he went with us and saw part of the new Mott Hospital. The University Hospital, Taubman Center, the Cancer Center, and new Mott are all connected. It is a humongous facility. The Bone Marrow Transplant Clinics and hospital units for adult and pediatric BMT are housed on the 7th floor of new Mott.
As nice as it is to be home, it is a physical challenge for Ron. We only have 3 steps from our living area up to our bedroom and both bathrooms, but he has been having difficulty walking. When we go to the doctor Monday, it is time to line up a physical therapist again. I hope we will be able to arrange all of his care here at home starting about March 22.
It has been nice to talk to a neighbor and have the Griffiths come for dinner tonight and watch some Big Ten BBall Tournament..especially since they brought dinner!! Ron's brother, Rick, also came and cut up a tree that had fallen across our street-side yard. He is coming back to visit again tomorrow and give Ron a haircut. I had buzzed Ron's hair for the last two years, but I like how his hair is growing back in and have convinced him to try just keeping it real short,
It has been enjoyable hearing the birds, the sounds of the sand hill cranes, seeing the spring flowers emerging, and crocus blooms. Our spring fed lake has risen quite a lot since fall, and if the wind just dies down some more, we will be able to hear the waves on our beach up on the deck. I can't help but start to plan my gardening as I walk around the yard!
Love to all of you. I hope everyone has had some warmer early spring days like we have enjoyed.

Last Saturday (Feb. 25) 91st Birthday Party

GG Hover, Ron and Rick's mother turned 91 last Saturday. GG (Great Grandma) lives in assisted living in Spring Arbor, Michigan. We celebrated Esther's birthday in our apartment in Ann Arbor.

Esther Hover, Rick Hover,Ron Hover
Happy Birthday, GG!! From Ron & Jan

March 2, 2012 Really?!

Unbelievable! March has arrived...I would say "in like a lamb" in Ann Arbor. Wednesday's appointment went well. A few meds were tweaked based on his bloodtests, and he only needs a hydration IV every other day. We are going to try to skip a weekly appointment, so Ron will only have bloodwork next week. We might go home for 2-3 days if everything falls in place.
What is next? Ron's next appointments are Monday, March 12. He will see his regular doctor, have an infusion of zometa to strength bones, and have a breathing treatment. Then the next day he has a stomach scope to see how/if GVHD is affecting his esophagus and stomach.
The GVHD of the skin is in the resolving stage again which means the red skin has browned and begun to peel. This involves nearly all of his skin. He has not had to have medicated ointments for 2 weeks now. We have switched to aquaphor.
As you can imagine, we are very anxious to be at the stage when it is feasible to go home. We trust that the doctors will make Ron better. There is a long road ahead of Ron to recover muscle strength and endurance, but it is hard for him to muster the motivation due to his fatigue. It will be nice when he can walk outside.
Hanging in there,
Ron & Jan