Last Post to this Blog I Hope

Now I have Billie mixing concrete for our new front porch at Hazelwood. Notice my new bench modeled after the ones my dad made.

This blog is my diary about my experience with cancer. For now I think the cancer is behind me. I will surely revive the blog if and when the cancer comes back. As far as I can guess that is about a 50 50 chance in cases like mine at this stage. My odds get better in time. There are many who live long lives after a stem cell transplant and I hope I am one of those. I could keep posting here but I would have to change the title to the cGVHD log because that is what my issues are all about now as far as my health is concerned. Besides that, the cancer is kind of a macabre topic after a while and it brings on compassion fatigue for even my most enduring family and friends. If it wasn't me I would be sometimes reluctant to check out this blog for fear that I would be going dust to dust.

I have started a new blog here that is more general and not so focused on my sickness. There I hope to keep you updated on my various projects. There should be more of the usual writing about cycling, mushrooms, dogs, making and wrecking stuff. I plan on posting a lot of updates about our fixer I'll call the "Hazelwood Project" with gratuitous photos.

Time to live it up.

Take Care.

Mike

Crepuscular living

Billie is hard at work on the roof.

People ponder why Meriweather Lewis left a void in his journals during his expedition. Was he depressed? Perhaps he was just a little overwhelmed with his daily life at the time to set aside time for writing. I suspect it was the latter. You can be assured that I am not depressed. Keeping up with life has been using up all my time lately.

The usual struggle with Chronic GVH has been a little consuming. My nurse practitioner today said that most people on as much prednisone as I have been on for the last eight months would be in a wheelchair by now. I feel a little encouraged by that. Although I have been riding my bike 35 miles five times a week or more I have not gained much speed. According to my cyclemeter, my best ride for the 35 miles was on March 10th. After so much riding, one usually feels better and can easily drop down a cog comfortably and ride a little faster in a higher gear. My progress has kept me in the same cog for the last six months. Only recently I have been able to comfortably drop a cog a little more often.

The progress on my bike mirrors the progress my body is making. My blood counts are still low. My liver function numbers are hopping up and down but mostly up which is a little unsettling. Today the lab says my liver is a little better.

To counter act all this and help make my life a little more normal I have taken a lot of mitigating steps. For sore feet I bought some goofy shoes that rock at the soles to take pressure off my heel and toes. I can stay on my feet a lot longer now. To calm my dry mouth I constantly take sips of water and gulp about two quarts first thing in the morning just to hydrate up. For my dry eyes I have artificial tear drops handy about 30 times a day and vitamin D ointment with steroid drops to boot. I ride with only one eye open because my left eye smarts too much in the wind. For my cracked fingernails I just tape them and forget about it. For nausea I have THC. For dry skin I have moisturizer. For the pain that won't let me stand in bare feet at night I have Vicodin. For fatigue... I just ignore it. For sun I have lots of hats and cover clothes. I stay out of the sun mid day and am mostly active dawn and dusk.

The thing I like the most is riding my bike at daybreak. My rides take about 2:15 and I start about 06:15 AM. I am slow and wobbly on foot but on the bike I am steady and smooth while I spin 90 +- RPMs in a 47 / 17 ring/cog. Early morning I can stay out of the sun and it is nice and cool when I leave. I am getting acquainted with all the usual riders and runners on the American River Bike trail at that time of the morning. The wildlife is interesting too. There are the turkey flocks that gather in the same spots every day. I regularly see the same coyote loping along near Hagen Park. This coyote has a much shorter coat than the coyotes at Lake Tahoe. He's a beautiful animal. I also see lots of Deer, cottontails, Jackrabbits, Doves, Quail, and all the other crepuscular critters.

I have been meeting Billie in the evenings after work at our fixer to work. Lately Billie is still doing the roof tear off while I work below. I changed all the locksets and rehung all the exterior doors. The whole house is a 1947 time capsule. It needs lots of work. Billie is satiated from looking at real estate listings. I set up a drip system so I don't have to spend a lot of time watering all the fruit trees. We have an Asian Pear that is making lots of fruit right now. There is also a Mission Fig that is loaded with fruit. We have lots of table grapes too. All the fruit trees have been neglected for a long time and will take a lot of care if they are to come back.

My home garden is so overgrown that you can't see the frames anymore. We are eating lots of stuff out of it.

DeBartelo tomatoes for sauces.

These Little Yellow Pear tomatoes are really sweet.

A little medley I roasted on the grill with a little butter.

Phallus impudicus on our front lawn

The cap may look like a morel but it will make you gag if you eat it.

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.

Springtime in Sacramento

Billie show off some of our bounty from our recent hunt.

We had a great day morel hunting. We picked at least ten pounds that dried into about about six quarts of dry mushrooms with a few left to eat fresh and give away fresh. It was a long day. We rose early in able to meet our guide from the Mycological Society of San Francisco. I know that if you go with Norm then he has done a lot of the research about where the "spots" are this spring. Morels fruit after forest fires the following spring. The rain and timing is critical because the window of opportunity is narrow. Early May is the best time to set aside time for the hunt.

We met Norm at 9:00 Am and caravanned through a maze of forest service roads to the spot. The picking was good. It should still be good for another two weeks depending on the rain and the elevation.

Morels just before I picked.

We picked into the afternoon an then hit the road again. I was driving because we needed four wheel drive and the higher clearance of my pickup. Billie has a phobia that terrifies her when driving near exposed places like cliffs and bridges. I do the mountain driving mostly. I am OK driving but my eyes need to constantly be wetted with drops to see clearly. My left eye is also a little blurry. I am perfectly alert and capable but my eyes could get worse. We drove about sixty miles of Highway 49 which was in full spring bloom. We stopped at a few historical spots along the way and had a nice tourist experience.

When we arrived home my eyes must have had worked overtime searching for morels and driving because for the first time they started to hurt. It felt like I had been poked in the eyes. Later that night I finally took a Vicodin and a little later I took another. That helped a lot. My eyes recovered and I haven't had any pain since.

This past Monday after clinic, I had an eye appointment with a doctor who is familiar with eye complications due to GVHD. I was worried that I was developing cataracts or some other serious eye disorder but it turns out that I have some scarring caused by GVHD. I may be able to wear glasses that will mostly correct the problem. I am using drops to put the kibosh on the scarring. I also had a little minor surgery on my left eye. The doctor peeled a square 3/8 inch patch of membrane that was attached to my cornea. I was impressed that he peeled it off in mostly one piece. My vision in my left eye has improved some and may improve a little more after I heal from the surgery.

I am dealing with the side effects of high doses of Prednisone. My appetite is great but my motivation to get up is quashed. If I don't keep moving, my body starts to waste. I can feel my muscles, especially in my legs getting sore and cramping like I ran a mile hard after not running for years. It keeps me awake too.

The only thing I find that helps the soreness is to get up and go. Gardening keeps me moving but for my legs I have been going on evening rides with Billie on our town bikes. I really enjoy those rides where we just tool around town looking at homes and gardens and occasionally stopping at a cafe or store. After we get back, my feet feel less sore and the soreness in my legs is gone. Last Sunday we toured around town including breakfast out and then a meandering ride through the neighborhoods. I follow Billie mostly and she sets a nice pace. Here is a link to a Google map of our ride that we did last Sunday. The evening bike rides are good for me to counteract the wasting. I am craving lots of protein too.

Billie is checking out a nice little bungalow that we saw along the way last Sunday.

Click for details.

The garden is coming along well. I planted a few more beds including some hops rhizomes in three varieties. Yesterday we received some Hayward variety kiwi plants that I plan to grow up the back side of the house near the hops. The kiwi and the hops should do a nice job of keeping a hot stucco wall cool.

This is Mesclun Lettuce and string beans behind.

The hops rhizomes have sprouted.

Dry Morels

It's Morel Season

We save the first weekends in May for morel hunting. This is Billie and some of our spoils last spring from a place near Emigrant Gap This coming weekend we will try some hunting on a day trip near Dobbins CA.

I am coming along well, adapting to my bone marrow transplant. It's been almost six months since Day 1. I have some Chronic GVHD. I thought my taste buds were failing again but it was my mouth getting dry. I have to drink water with every bite now. My eyes are also very dry. I have to use eye drops almost constantly especially while driving or my vision starts to get blurry. Some of my liver function numbers are also a little high. My skin is very sensitive to the sun. A burn could aggravate the GVHD and cause it to snowball into a full blown reaction. I have to live the life of a vampire and stay completely out of the sun. Billie is already kind of a vampire too being a melanoma survivor so I have a endless source of sun blocking guidance.

To fight GVHD I had to increase my dosage of Prednisone. I was tapering off it and down to 20mg every other day. Now I am back on 80 mg /day. The prednisone keeps me awake sometimes and increases appetite. It also causes wasting and innumerable other nasty side effects. It's easy to let go and atrophy. I have to make myself get up and move sometimes. Exercise whether it is cycling or gardening has really helped me to prevent wasting away. I am reminded of Marty McFly in "Back to the Future". He was looking at a photo of himself fading when his mom was dancing with someone else and when his dad cut in, he sprang to life. Boing! I sometimes feel like Marty when he was circling the drain and when I exercise, I spring up and come back to life. Boing. A fresh roasted espresso doppio can help it along a little too.

I am OK to go to restaurants and stores now. It was so long since I went out in public in a restaurant that I felt self conscious the first few times. I am still a little slow walking but a little faster than shuffling. My eyes are better but I looked a little demon red in the eyes for a while there. It felt good and kind of new to be mingling with people.

I took this photo with the camera on the laptop. I have to cover up completely. Doctors orders.

Spring time in Sacramento is pretty nice. Most of my available energy has been used up gardening. Building raised beds requires quite a bit of work at first. I used old salvaged fencing to make 40 inch square beds. I have eight beds made so far and hope to have about 18 when I am done. Today I plan to make a couple beds for hop vines to grow against the house. In each frame I turn the soil and mix it with compost. I have to weed out a lot of bermuda grass rhizomes when I break up the soil. I have to swat the clumps with the back of the spade , then kneel down and shake off the soil from each clump. The frames are leveled and staked into place after I turn the soil underneath. Turning the soil and mixing in the compost is kind of aerobic especially when my hematocrit is still running on the low side at 38.1 . It feels good.

Seedlings are coming up and I planted a few pepper and tomatoes sets.

This is the little Tahoe garden I planted last summer. I planted the garlic last October and a few chives. parsley and carrots overwintered. The wire keeps the cottontail family out.

This is the nifty sifter that just fits over the wheelbarrow for making seed bed out of sifted compost.

This is the sifted seed bed that I screed across the soil compost mixture below.

I couldn't sleep one night so I was brushing up on my drawing program and came up with this nice chicken coop that would keep four hens and just fit in my tiny backyard. It would feature a raised run completely enclosed with 1/2" welded wire mesh, a raised waterer with a perch, a food box with a hopper holding 2 weeks of food, nest boxes and a roost. A wood floor with 1/2 " spaces between for debris would sift out the bedding to be further sifted by the wire mesh below. I could rake out the droppings and use them for fertilizer. The whole thing could be made in panels to help move it easier. The whole coop is predator proof and self contained.. No chickens are allowed in Sacramento but people do have clandestine hens.

This is Billie's new bike. It is a Trek "Belleville". It is the totally ground up built town bike complete with dyno hub lights, fenders, chain guard, and cargo racks. We can really use it for errands and just cruising around town. Click the photo for details.

I had the new old Santana tandem at Steve Rex's shop here in Sacramento to lower the brake bosses to fit more modern wheels and brakes. He complemented the bike on the quality of the build. I have yet to re assemble it. In the meantime we bought this killer bike for Billie. It's a beauty. We love this bike. The name probably refers to "The Triplets Of Belleville" about an old lady, her dog, and her odd son who was a Tour de France cyclist.

In case my eyes get so bad, I can't drive, I can shop using a bike. I wont wait until I can't see to use the bike for shopping. I ordered some nice shopping baskets that lift right off the bike with handles to take into the market.

Coming up in the cycling calendar is a visit from Kit and a few day trips to follow the Tour of California. There is a stage near where Maura lives. Kit and I just might be dropping by for a visit. Lance Armstrong and several of his Tour de France rivals will be there also. Here is a photo of Lance last summer at the Nevada City Classic.

I took this photo last June at the Nevada City Classic. Ian Boswell is on the wheel of the Man at the top of the hill. Ian who is the son of my old friend Grant Boswell had a breakout day winning the junior race and then entering the senior pro race. He was lapped, but when Armstrong came around with his breakaway group, Ian jumped back on and stayed for at least another seven laps. Later in the race when Armstrong was alone at the front he passed Ian again and Ian hung on for another 3 laps. Amazing. His future team mate who was in the break was just as amazed and helped Ian get a premier sponsor on his new team, "Bissell Pro Cycling". Last I heard, Ian was in Europe racing espoirs, the under 23 pro racers.

Gardening

This is the layout for our garden

I haven't posted for almost a month now. No need to worry. My condition seems to still be steadily improving. I am still on prednisone that seems to make me feel weak. I work for a few hours until I feel tired and then relax for a while before going back to work. By the end of the day my feet are so sore I can barely stand. My skin is very sensitive to the sun. I need to cover up and slather lots of sunscreen. I still get red where I get sun in spite of spf 100 sunscreen. I need to stay out of the sun at least for another two or three months so as not to aggravate my immune system and set off a GVH reaction. Small insults to my skin could snowball into a case of full blown GVH. I noticed recently from just a minor exposure on the back of my hands, my skin blistered in a few places. After meeting with my doctor today we decided to stay indoors from 10:00 AM until 04:00 PM. I have been given more freedom

In spite of all that I have been doing a lot of bike rides and this past week I have been working on getting a garden in for the spring. I built a nice fence with a gate to keep the dogs out. The fence has chicken wire to let light through and to give climbing plants like cucumbers a place to grow. Old redwood fencing will be made into raised beds that will be laid out in a grid. I visited a stable and brought back a truckload of fresh manure to make a huge compost pile for my raised beds. That was a long day. I didn't want the subject for the next day at the clinic to be a debate about the safety of pitching manure so I steered Billie out of the backyard until after the clinic. When she did see the pile it didn't dawn on her right away that it was mostly manure. It just looked like a pile of straw the first day.

This is the pile on the first day

This is the pile after three turns and a week.

The squirrels were competing too well for the remainder of the oranges so I picked all the oranges and brought them inside. At the rate the squirrels were eating them they would have been gone in a couple days.

The end of the oranges.

The summer navel orange tree in the garden area had grown very fast and gotten away from us in the past few years. It was already a great producer in just six years. We cut it back severely to give it a longer trunk and to keep the oranges out of reach of the dogs. Before it made a nice shady canopy that Tempo liked to sleep under during the hot summer days. She likes to dig and make nests in the cool dirt.

Tempo's nests under the orange tree.

Working in the garden has exposed me to a little too much sun in spite of covering up. I thought I was doing enough but I was wrong.

An old t shirt scrap covers my ears and neck but I still got too much sun.

Back On the Bike

My 1979 Colnago Super

Finally after over two weeks of setbacks like BK virus and an unfortunate encounter with Mojos' foot. I am finally back on my bike. The drugs I am taking cause wasting and I can see what happens when my activity level declines. I get weak. Just when I was getting over the nasty BK virus Mojo slammed me while he was dashing out the door. He used my toe for purchase to launch himself outside. It was early morning and I think I woke Billie up with a few bad words. Sorry Billie.

My owie might not have looked this ugly if my platelets were not hanging at about 80.

Consequently my foot swelled up and it was even more painful to walk. By this past Wednesday I had healed enough that I was able to don my riding shoes and take my old steel Colnago out for a spin. I was surprised once again how natural it felt to be on the bike. I felt much better riding than walking. For some reason my feet still get very sore from standing and walking. Riding does not seem to put as much pressure on my feet.

Not knowing how far I should go in the state I'm in, I only went about ten miles the first day. The next day I felt fine going fifteen miles. I bought a cool app for my iPhone that is a bike computer. It maps my ride with the GPS, gives average speed, max speed, elevation gained and a bunch of other stuff for only $4.99. Thats how I know I went fifteen miles.

Today was clinic day in San Francisco, so the whole day was spent traveling back and forth dawn till dusk. We went to our apartment on Merced Lake for the last time, picked up a few items, cleaned the place and checked out for the last time. From now on clinic days will go faster when we don't have to go to the apartment and move stuff out. By the time we left SF the traffic was snarled with flooding near highway 1 and Doyle Dr. Heavy rain made the trip slow all the way home. Billie and I arrived home both tired and testy.

I neglected to bring my meds with me when we went to the clinic so I downed them all at once when I arrived home. Consequently I am now up at 3:15 AM writing this because I can't sleep. I usually take the prednisone in the afternoon so I can sleep at night. Oh well. It's not like I have to get up and go to work the next day. I have never been one to worry much about how much sleep I get. I seem to always get enough sleep somehow and have rarely felt sleep deprived.

The weather has put the kibosh on our plans to go to Tahoe this weekend. Driving in a snowstorm on I-80 crowded with other weekenders does not seem very appealing right now. We haven't spent a night there in about four months now.

Here is a nice youtube clip I found that pretty much describes my whole outlook on life starring some of my favorite heroes including Richard Feynman, Carl Sagan and Neal DeGrasse Tyson among others.