Wednesday, May 26, 2010

Dog days of Sacramento

This old Photo from circa 2000 is nice to look at when the temps are rising.
My three huskies are pulling me on skis while breaking a really nice trail.

It is summer now and a long time since I last posted. This past month has been very eventful to say the least. Since this blog is to document the course of this strange disease among other things I will start with that.
My chronic Graft Versus Hose Disease flared up a little a few months back. To quell the flare up, my doctors raised my level of prednisone back to square one which was 90 mg / day. The second round of prednisone therapy started to take a heavier toll on my body. I was having problems with my skin, liver, mouth, eyes, and gut. All of it was bearable and not too serious yet. The strategy is to prevent my new immune system from waking up and attacking me. The increased prednisone should dampen my new immune system and let it have more time getting used to it's new home. The new prednisone regimen seems to be working. I am down to 30 mg / day now. The tapering period is slower than the last round and so far my GVHD has not gotten worse. I might be even a little bit better .
I was getting a lot weaker from the side effects. The most unsettling is the body wasting. Even though I was managing to ride my bike a little and get up and out, I felt like I was circling the drain again. The last time I felt so weak was last summer when I was diagnosed with AML.
My blood counts are still on the high end of low which is OK enough. My hematocrit which is a measurement of the oxygen carrying capacity of my blood is hanging around 35. A month ago it was near 40. Now my prednisone level has dropped enough that I am back riding my road bike early mornings. I feel my strength rapidly coming back.
My eyes have stabilized and don't seem to be getting worse. I have had four visits to the eye doctor and each time they peeled another membrane from my cornea. The membrane is unusual enough that all the residents and the doctor are delighted and excited to look at it and get a chance to do their turn at peeling it off. I get the impression that the last time they did, if ever the procedure, it was on a cadaver in medical school. Imagine what it feels like to have sharp forceps tearing a tenacious membrane from your eye. The first few times I had it done, I couldn't help laughing because I was thinking about all the insults that this disease has thrown at me and here I was enduring one more insult. Ha Ha. From a scientific point of veiw, the progress of the disease and the remedy has been facinating. The fact that it is happening to me makes me ever more curious as to what is next around the corner. It is kind of an adventure for me.
I am slowly getting better and could possibly be off the medications and almost normal by next fall but you never know. I am on several online forums with other patients who have GVHD and everyone's case is different. This GVHD thing could go on for years but my doctors tell me that odds are better that my new immune system will adapt and my life could be normal again.

Morning Meds
Prednisone, V-fend, Levaquin, Tacrolimus, Cellcept, Magnesium Oxide,
Sulfameth, Vitamin D3, and Valtrex.

Another gratuitious dog photo showing Mojo and Seamus leaving the chute.

Last month Kit came down from Anchorage and we took a road trip following the Amgen Tour of California for the first four stages.
This is a photo Kit took of the peloton cresting Sierra Road.
Lance Armstrong is at the far left

This is me climbing up the back side of Sierra Road to watch the race. I don't usually ride mid day so that explains the dorky sun hat.

We had a chance to visit with Maura and her family before the Bonny Doon stage. Maura's house looks great and the kids and Paul all seem to be thriving.
We spent a few nights at Dave Gerrys house in Walnut Creek. Dave took good care of us. We had to go see the puppies nearby that my sister Marianne was raising.

This is my neice Sabrina with one of the puppies.

This is the nice puppy pen in Marianne's back porch.

My dad died on June 7th. He had been suffering for a very long time from dementia to the point that it had been several years since he was able to recognize me. Here us a link to his obit that my brother Gene wrote. I will really miss my dad. The time I spent with my family and friends before and at the funeral was a good thing to help remember him the way he was before he became sick.
I always knew the day would come when my brothers and I would fulfill his wish and make a coffin for him. I had been dreading it but when the time came it was actually kind of fun to spend that time with my brothers and my family.
After we waited for the mortician to show up and remove my dad's body, the mortician turned to my brothers and I and asked ,
"What kind of wood would you like?"
Gene said, "Oh, I brought some redwood."
The mortician looked a little befuddled with that answer and promptly got on the phone with the boss. He nodded and calmly to be accommadating he agreed. He mentioned in thirty years, only one other family had supplied their own casket and they were cabinetmakers.
The next day with some of our tools and a few borrowed from Dave's neighbor we assembled the coffin in Dave's driveway. We had a vision of what we wanted from the shape typical in cowboy movies like "Lonesome Dove". To measure, I laid on the slab of pine we bought and my brothers eyeballed the proportions. The redwood was milled from Gene's property in Fieldbrook on his portable mill. The slab base was fingerjointed pine from Home Depot.
We brought the coffin to the funeral home that day. The mortician seemed pleased and asked if we had been working on it for quite a while.
Kit said, "Yeah. We started this morning with hangovers at eight oclock and we were done by two".

Dave holding up the slab made to cowboy specs.
Notice the gnarly calves that Dave is sporting these days.

My brothers installing the rope handles.

Deni helping with the sanding.

The finished coffin.

Loading the coffin onto Genes Car.

We arranged a colorguard and a bugler to play taps for my dad who was a decorated veteran and survivor of the Battle of the Bulge during the Ardennes campaign in WWII.

Our little garden is coming along fine. We are eating stuff from it and there is a lot more to come.

This is a portion of the garden on June 10th

This is my little Tahoe raised bed with some things that overwintered and a few seedlings I planted a month before.

Today we put a deposit down on a property in Sacramento. We should be holding the title in about two weeks. It is an old ranch house made in 1947. There are million dollar homes in the same neighborhood. We bought it on a short sale for way less than it is worth but it will need a lot of work too. I have a job now. We plan to convert the River Park house into a rental and move into the new house when we make it livable. It is at 4521 Hazelwood Ave in Sacramento 95821. It is a fixer and will need a lot of work. It is on a half acre and we can have chickens. There are a lot of mature fruit trees too and a small vineyard out back.
This is our new property in the Arden Arcade neighborhood.

This is a Ghost bike that is near our River Park house where a cyclist was killed last spring. The intersection is poorly designed and it is easy to see how someone could make a fatal mistake.


  1. Hey Mike,
    It has been a while since I last communicated with you but I felt compelled to do so again. I am Tom Malolepszy's wife Patricia. He had a stem cell transplant for AML 2 and a half years ago at Stanford from his sister. I am a nurse and my father died from Alzheimer's on June 3rd, he was 90... I looked at your list of meds and at your activities present and planned. VFend is an immunosuppressant and can make you susceptible to infections like Prednisone can. Please be careful when you begin work on your new place. There is ALOT of creepy stuff in old houses just like in the dirt in your garden and as long as you are on either prednisone and/or Vfend you are at greater risk to catching some obscure, weird spore, microbe or mold...Please wait for your immune system to catch up with your lifestyle, Tom had me there to hold him back and I think you may have a hard time being in the wait mode. Please be careful, more than you want to... don't mean to sound like a nag but I just couldn't help myself, Patricia Hernandez

  2. I only know you through skijoring, and then not personally, but I wish you all the best. I hope you can get back into the mountains breaking trail with your dogs soon.
    You have an amazing attitude toward your disease. Keep fighting!
    Best to you and your pups.