AML Log

Last Post to this Blog I Hope

2010-09-13T13:43:00.000-07:00

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

2010-08-19T18:02:00.000-07:00

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

2010-05-26T10:15:00.000-07:00

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

2010-05-11T11:03:00.000-07:00

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

2010-04-24T10:46:00.001-07:00

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

2010-03-26T15:30:00.001-07:00

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

2010-02-27T02:28:00.000-08:00

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.

Home Again

2010-02-20T07:46:00.000-08:00

Our new tandem

Leukemia never ceases to come up with something unpredictable and bizarre. This past ten days I have been enduring some of the most painful symptoms yet. There is a virus called BK virus that is endemic in about 80% of the general population without any symptoms. For some reason peculiar to Bone Marrow Transplant patients taking immune suppressants like Tacrolimus, the BK virus often rears itself and inflicts Hemorrhagic cystitis. The symptoms include severe pain during urination and blood in the urine. There is no cure. I am told that after six weeks it should go away. The only relief is to ingest copious amounts of water. The problem is that when I urinate I can only squeeze out about 50cc when normally I can go about 700cc. That means a lot of getting up to go. At night when I don't drink as much, my urine becomes more concentrated which only aggravates the pain and increases the bleeding.

Now after a week of aggressive hydration I finally have it under control with little pain. It will come back unless I keep up the drinking. I am now able to urinate an average amount. The pain meant that I had to resort to going on Vicodin until yesterday.

I am told that it will still be about two months until I can go to a restaurant or go shopping. The prednisone I am on keeps me wired like I am on ten cups of coffee. Being so wired makes it hard to stay off my feet but my sore feet knocks me down late in the day. It is hard to sort out what is a side effect of the drugs and what is GVH. The GVH in my gut is still there causing little mouth blisters on my palate and a sore rectum. The skin GVH has calmed down from applying moisturizer every day to my entire body. My skin actually looks and feels good. At the weekly clinic they say I am doing as good as can be expected. We are still waiting for the final cytogenetic results from my bone marrow biopsy to determine if the FLT3 ITD gene is still present.

The result of having so much pain down there has delayed my getting back on the bike. Today I hope to go out for a spin for the first time in about three and a half months.

Billie and I also bought a used tandem off of Craigslist. I saw the tandem for sale last fall and I was shocked that the guy never sold it because it showed up on craigslist again recently. It is older and steel but still a very nice bike. I missed my old road tandem that I traded for some misguided reason for a Mt. bike tandem in the late 80s. The bike needs some minor brake upgrades but overall it is ready to go. That is one more bike in the garage. I purged a few bikes I wasn't using a while back, so now we are down to only nine bikes including Billies'.

I have been at home in Sacramento for two weeks now. Moving in has been quite a chore. Our neighbors who we paid $700 a month for over three months to clean the house and pick up after our dogs did less than the minimum. I am grateful to them that the dogs are here and still alive. The gratitude ends there though. We made a trip on the Tuesday before we moved back to check in on the dogs and pick up a few things we needed to help us move. The front door was hard to open because it had swollen from the heat in the house being off. The pilot light had gone out on the heater and the caretakers had not bothered to restart it. Consequently the humidity had risen in the house so much that the oak flooring had swollen and buckled in several places. The water table is high in the winter because we are so close to the river. The caretaker had been forcing the door which warped it. I spent a few hours again shaving back our new mahogany door to make it work again.

Our new front door in Sacramento

When we entered the house there were hundreds of grapefruits and oranges in varying states of decay all over the house that the dogs had brought in. Billie picked up all the rotten fruit and scraped the floor where the fruit had hardened after rotting with a wooden block while I mopped behind her. The rest of the time, Billie was in the back yard cleaning up months worth of poo from four dogs that was never picked up. They had picked up a little into an unlined garbage can that had no lid so rain water had saturated the whole mess. The heavy slurry of poo was dumped into the trash by Billie with the help of the gardener. Billie was mad to say the least.

I could go on. In hindsight I should have asked our next door neighbors who I know would have done better. The people across the street we hired seemed like nice enough people. The dad has been out of work for about two years. He is holding out for a job at a Christian radio station. Evidently they are not hiring the mentally challenged at Christian radio right now. The wife works at a near minimum wage job. Their house looked clean and they had a dog and a ten year old boy. They really needed the money.

Since I have been home, Billie has gone back to work. I have been playing the role of House Husband. I get Billie up early with a latte in bed to give her time to exercise on her rowing machine. I make her breakfast and pack her a lunch and send her off.. During the day I have been cleaning house and getting the office room together.

Our office with my computers on one side of the desk and Billies' on the other side.

We took a day trip to the Tahoe house to pick up a few things including a recliner and my old computer that has my drafting program on it. I can now use it to design our remodel of this house while I recover from this disease.

Billie at our house last week.

I went on a shopping spree online now that we are on a secure internet connection. I ordered a few kitchen gadgets and some camera accessories among other things. I have a new citrus juicer that I used for the first time this morning. There are still a ton of super sweet oranges on our trees that I plan to eat. In the summer we have unlimited grapefruits. The juicer was less than $25 and was rated best by Cooks Illustrated.

My new Black and Decker Citrus Juicer.

Milestone Day

2010-02-05T19:00:00.000-08:00

Maura , My sister and stem cell donor

Left to Right, Brothers and Sisters

Myself, Gene, Kit, Nancy, Marti, Marianne

Mauras' daughter was sick today so Maura couldn't make it

Today is day 92 since my stem cell transplant. It is kind of a milestone day and the news is as good as it can possibly get. I had my fifth bone marrow biopsy in six months today and the preliminary results are the highest number they are willing to give it at this time. More specific results will come in about two weeks. Celebration time.

My thirty day chimerism test finally came back after sixty two days and it showed more than 95% of my blood cells were already Mauras'. Those results were very good also.

The line into my vein that has been an external fixture on my body for the last six months was removed today. The nurse asked me to hum while she pulled out the foot long line that was inserted into my arm and went directly into my vena cava. Whoo Hoo! I am so glad that's gone now

I appears that the tests are verifying just what I'm feeling. I still have a long way to go. I will be managing the GVH symptoms and it will be a minimum of three more months that I will be on immune suppressants. After that I heard I may be drug free. Amazing. That would be the best scenario. If the GVH flares up then the drugs may have to be extended. Unlike other recipients of donor organs, stem cell recipients can eventually be weaned completely off immunosuppressant drugs that combat graft rejection.

Family Reunion

This weekend is the annual sisters weekend for my sisters, our wives, nieces and children. We met in Golden Gate Park today for a walk on the beach and a photo op. Billie will be with the sisters and Kit is my temporary caretaker. Tomorrow with the help of my brothers, I will move back to Sacramento. While the sisters go to the wine country, the brothers will be hanging out and watching the Super Bowl together on Sunday. My old friend Paul will be joining the Super Bowl party too.

While Kit and I are together we went to visit the site of the Broderick / Terry duel nearby.

Kit at the site where Terry killed Broderick, the State senator in 1858.

We then then took a hike into Ft Funston. Midday Ft Funston is crowded with professional dog walkers. You can often see single persons with ten to fifteen dogs running loosely around them.

This pro dog walker has been walking the dog with the mask and muzzle for five years. "This dog has issues." he said.

These three bungalows are near south Buena Vista Park known to the locals in the Haight as "Acid Rock." "My mom would never let me go near there", one baby boomer age lady told me.

Click for a higher resolution photo.

I Have My Camera With Me Now

2010-02-01T14:47:00.000-08:00

I liked this donut sign on Chestnut and Steiner.

This morning I was supposed to have a bone marrow biopsy. Someone dropped the ball and didn't correctly schedule an appointment for me. All I had was a note scribbled by an assistant doctor on one of the doctors' cards. That wasn't good enough this morning. The nurse practitioner was very apologetic and we were rescheduled to have the biopsy done this coming Friday. Oh well. I am optimistic but waiting for results are a little unsettling. The biopsy will be the best way to find out if there is still Leukemia in my marrow. I should know preliminary results that afternoon and cytogenetic results in about three weeks. The cytogenetics should tell me if the scary FLT3/ITD gene is still active.

There is a lot of reason to be optimistic. The drugs I am taking seem to be controlling my GVH symptoms. I am getting used to the side effects like sore tingling feet, fatigue and an unsettled stomach. There is no detectable Leukemia in my blood. I feel good in spite of it all and I can detect steady improvement. My taste and smell seems to be almost back to normal and I don't have the chronic nausea that I had. The test results will help determine my routine for at least the next three months.

Wednesday will be day 90 since my transplant. It is kind of a milestone for many patients because if all goes well I could be sent home. Kit and Gene will be here over the weekend to help Billie and I move out of San Francisco. Kit will be my substitute caretaker while Billie enjoys a break and the company of my sisters for the annual sisters weekend.

We did our weekend tourist excursions, this time to Twin Peaks and Cow Hollow where we got out and walked about.

Billie poses on Twin Peaks

A little sunflower on Twin Peaks

In Buena Vista Park today I found an interesting mushroom. It was an edible Amanita calyptroderma. It can be recognized by the thick veil remnants on the cap and striations on the cap margin. It is also known as the Cocorra. I haven't tried to eat it yet but I see it often enough to recognize it right away. These specimens today were perfect for the table.

The Cocorra

This is a house a block off of Buena Vista Park. We saw the owner walking his two King Charles Cavalier Spaniels in the park. Later we saw him again coming back from his walk when we were admiring his house. We found out that it was built in 1916. The architect was most likely Julia Morgan. The dormers on the side are clad in slate.

This house is on Masonic and Upper Terrace.

This view show the slate on the dormers.

Click on any photo to see more details.

To zoom, use the enlarge text function on the browser

2010-01-27T10:39:00.000-08:00

Billie emerges from the Doghouse Bar on El Camino Real.

It is so convenient that it's open at 0600 AM.

Daily life in the apartment complex is almost a routine now. I am familiar with the limited broadcast options for daytime TV. About the only thing I like all day is Perry Mason at noon followed by Americas' Test Kitchen on PBS. I like the cars and outfits on the Perry Mason show. The series is classic film noir style with lots of drinking and cigarettes. Billie works most of the day on her laptop and I try to keep quiet. While I write now I am catching up on The Colbert Report online with earphones on. In the background there are the reports of a lot of shooters at the rifle range. The sun is out now that the fog has dissipated. It's a nice day to be outside shooting.

We have clinic twice a week where we go and have blood drawn for several tests. We then wait for a meeting with a nurse practitioner and sometimes the doctor. At the clinic we go over the test results and adjust the levels of certain medications. I answer a series of questions about how I feel and I undergo a minor examination checking for signs of Graft Versus Host Disease among other things. Clinic visits last anywhere between four to six hours.

The drugs I am taking cause a lot of side effects that mostly effect my stomach. I am also taking steroids that can cause wasting after long periods. I am told that I will be on the steroids for at least four more months. I can see how easy it would be to just sit around and waste away losing weight, not eating and not exercising. The inclination to vegetate is pretty strong. I feel like I am coasting on the strength I built up last fall. Any strength I gain is from our daily two mile walks to Ft Funston.

This is the view from a deck near the hanglider launching area at Ft Funston.

I am walking pretty slow these days. Billie has to check her pace. We often sit on the park benches and watch the dogs romping and the ocean. Feeling so weak all the time is one of the most difficult things for me to accept. I am very aware how I must look when I slowly shuffle along. I did manage to pass one guy on the trail last week who had a broken leg.

Over the weekend we did more exploring the vicinity. We checked our mushroom spots but didn't find much except for a few nice Amanita muscarias.

The Fly Agaric

Billie and I are still astounded by all of the homes in San Francisco and the vicinity. Billies loves to drive block by block and find nice jewel houses in the neighborhoods. It is obvious that certain builders developed a lot of the neighborhoods. You can tell by the style of each builder where he was in the neighborhood.

This is another Home on 42nd near the one I posted last week. It was probably by the same builder. Click on the Photo to see details.

No News on Day 76

2010-01-22T16:52:00.001-08:00

Craigslist Corporate Headquarters

9th Ave between Irving and Judah.

This is day 76 out from my bone marrow transplant. At the clinic today my blood counts were in the normal range for the first time in months. My platelets are still a little low and I have no t cells but the rest of the blood is coming along fine. Everything is where it is supposed to be at this time. In two weeks I will be due for my first bone marrow biopsy since October. If the cancer is coming back then the biopsy will tell. Even if there is a little cancer we hope the graft from Maura will eat it up. The strategy is to give Mauras' cells a longer leash by reducing the immune suppressant drugs. It will be graft versus leukemia or GVL as they say. The best outcome would be no detectable cancer in the biopsy. We will know in about 3 weeks.

I have symptoms of GVH in my skin and gut. I am not sure what is making me feel weird. Is it the drug side effects, the GVH or a combination?

My appetite is still behaving peculiar. Certain foods still have no appeal that used to sound good. I do like fruit. I am eating lots of frozen tropical fruit from Trader Joe's and frozen strawberries. I still can eat beans in soup and chili. Pizza and pasta are unappetizing for some reason.

Billie at Baker Beach

After we visit the clinic we often meander about town looking at the local sights. Today we visited Baker Beach and toured the Richmond District. Billie bought a few take out meat pies from a bakery on Irving St. That is as close as we can get to eating out. We save lots of money not eating out these days. We like to eat at restaurants but that will have to wait.

I love all the rain we have been getting. Tomorrow we will check our Bolete spot to see if there are any more coming up. I have my camera with me now so I will be able to post more photos. I wish I had my camera when we found the boletes the first time. They are so beautiful. It is also the best time to find Blewits which are another one of my favorite edibles. Mushrooms make good photo subjects because they stand still and don't blow in the wind.

This is a little bungalow

between Irving and Lincoln on 42nd Ave

Click on photos for a larger view

The Naked Guy

2010-01-14T11:02:00.000-08:00

It's still kind of quiet on the AML front. My blood counts are in the low range and are very slowly rising. I am told this is normal and all is good so far. I am still on immune suppressants that keep my T cells in my blood near bottom. Because my T cells are so low I am at a high risk for infection. I am still not able to mix with the greater population. Much of my time is spent in isolation with Billie. It may not be until May at the earliest that I will be able to go to a movie or mingle with my family. Kids are especially dangerous. My nurse practitioner equated kids to little cesspools of inoculum.

Just this week I experienced the first real manifestation of Graft Versus Host Disease. My skin has a light rash. I have been given hydrocortisone cream to apply to my whole body. Since the rash broke out I have been having some trouble sleeping. I can't pinpoint what is making me uncomfortable. I can't lie long in the same spot without discomfort. I turn over all night as if I'm on a rotisserie.

Having a little GVHD is a good thing because we know that Mauras' blood is there and reacting to her host. The theory is that with the help from a little GVHD the transplanted donor will attack any cancer that is left in my blood. We don't want the chimeric blood to all just get along.

If all goes well, we will be allowed to move back to Sacramento on day 90. That would be about February 4th. At that time my brother Kit will be here to take over care taking while Deni whisks Billie off for some well deserved rest. The annual Callahan sisters weekend will be at the same time. I may be able to visit with my sisters and the kids if everyone is outside. The doctor will have to advise us at that time. That same time my brothers Kit and Gene will help move us out of this apartment complex.

I can update on the efficacy of Marinol. I sometimes wonder what it would be like if I went off it. I got the answer recently. It had been about 24 hours since the last dose by the time I noticed I was getting nauseous. I neglected to remind myself to take the morning dose. I had a hard time keeping lunch down until the medication began to work again.

Besides our almost daily strolls into Fort Funston we like to take walking tours in San Francisco. Of course we cruised the Castro. We visited Mission Bay with ATT Park towering over. We walked all over Sausalito where we talked for a long time with a boat maker in his shop. Fort Baker was nice. Sometimes we just pick a different neighborhood and go for a stroll.

Last week we were taking a walking tour of the neighborhoods near Alamo Square. While strolling by a corner cafe I noticed someone without a shirt on. He was seated among other patrons that were there for a nice place to hang with your coffee. It was a little peculiar seeing someone without a shirt being that it was winter. It was a sunny warm exposure though. As I walked closer I noticed that he also did not have any pants on. The little table he was seated at concealed part of him so I thought for a moment that he must be wearing shorts. As I passed him I had to side glance and verify the shorts theory. I was wrong about the shorts. There IT was working on IT's tan. The few glances I got from the other patrons seemed to say something like, "Oh brother, There's a naked guy sitting there."

Billie was just ahead of me and when we were about fifty feet down the sidewalk she stopped and whispered to me, "Did you notice that guy?" He did have some nice shoes. When we came around the block again we saw the naked guy on a different corner surrounded by about five SF cops.

Only about 20 days left here in San Francisco. I will have to come to the clinic every two weeks for at least the next six months. When I am off immune suppressants in May then I will be off of most of the other drugs I am taking too. That day can't come soon enough.

Take Care

Mike

Happy New Year

2010-01-01T22:56:00.000-08:00

Well.... No news is good news when dealing with this disease. I say that because it has been a while since I last posted here.

I was a little over optimistic about the Marinol. It is not as good as I was hoping for putting down the chronic nausea. The stoned feeling subsided and the nausea still comes back in unpredictable waves. Counterintuitively I think I can control the nausea by eating a little when I feel nausea. Part of the problem is I need an empty stomach for 3 hours twice a day when I take some of my meds. It is when my stomach is empty that the nausea comes on the most. One thing is that I have not vomited since I have been taking Marinol. It might be that the nausea is fading as my chemo wears off.

There is no sign yet that my hair is coming back. I still have a few wispy wizardly hairs clinging to my eyebrows. They are not those bushy eyebrows that used to remind my mom of uncle Frank anymore.

I still have to take immune suppressants. I have to wear a mask in the halls of our apartment complex and I am not allowed to mingle with the public.

I feel so grateful for having Billie with me. I feel like I owe her so much because she is so good. I don't touch door handles or anything out in public. She opens doors for me and pumps the gas in the car. So far so good because I am free from infections when I am extremely susceptible.

Billie and I are still taking daily walks. The mushroom hunting hit the glory hole last weekend. We found five beautiful King Bolete buttons that must have weighed five pounds total. I sliced and browned one in a little butter and fed it to Billie and she really lighted up. That was one very tasty mushroom. You should have seen the fervor she was hunting with the next time we went out. Seeing her poking around in the duff is one of the small things that really make life enjoyable right now. She has bolete fever really bad.

We still go on regular walks in Fort Funston. I like to talk with some of the dog owners about their dogs. A few weeks ago I asked a couple who had Portuguese Water Dogs if they had them pre Bo or post Bo. The guy was very quick to answer, "Pre Bo". Another couple had a pair of Vizlas with e-collars on. They look a lot like my pointers. I told them that I would be doing the same thing using e-collars just to make sure they stay nearby.

Last week we saw a show on PBS called "History Detectives". The topic was about two dueling pistols and if they were used in the Terry/ Broderick duel in 1858. It turns out that the site of the duel is within walking distance of our apartment complex. I did a lot of history reading on the internet and then we walked over to the site. The site was a little hard to find with all of the building that has gone on since the duel. It is still there with granite markers where each man stood. Broderick died after his weapon discharged in the ground in front of him. His piece had a stuck hair trigger that was very sensitive. Terry had a free shot and he killed Broderick. Terry's matching weapon still had the hair trigger adjustable. Terry was a southern sympathizer and Broderick wanted California to be a free state. Terry was the chief justice of the California supreme court. Broderick was a state senator.

Fort Funston and Nausea

2009-12-20T13:55:00.000-08:00

Billie and I have been walking daily to Fort Funston that is just a short walk from our apartment complex. Fort Funston during WWII had 20" cannons to defend the coast. From photos, the cannons looked to be about 50 feet long. There was also a Nike missile base there. Today the site is a giant dog park with several trails for walking and beach access. The concrete pad that was the missile site is now the parking lot. Billie and I enjoy watching all the dogs running free. Often you see pro dog walkers with 10 to 15 dogs romping all around them. Surprisingly the site is relatively poop free because the owners seem to be pretty well trained. Fort Funston has always been one of the most popular spots in the state for hangliders. It still is. I have seen some interesting mushrooms along the way. Three were choice edibles. Those being Chlorophylum rachodes, Agaricus campestris, and Flammulina velutipes. The walking at Fort Funston helps to make our stay here much more enjoyable. Great ocean views.

Today we walked around downtown Burlingame for a few laps. I put my mask on and entered a pet boutique. I think Mojo would look good wearing a pair of those dog antlers that seem all the rage this Christmas. Remember the Grinchs' dog who had to pull the overloaded sled wearing fake antlers? We found some nice antlers but the string that ties them looked like it would last a second on Mojo. We checked out downtown San Bruno via El Camino Real. El Camino Real is the oldest road in California. It was the road that linked all the 21 Missions. It was entertaining looking for remnants of the olden days. The iconic bell on the shepherds crook marking post is still there in places. I wish I had my camera to take a photo of the old and decrepit "Dog House" bar and liquor store from the art deco period.

I continue to get better every day. Long walks don't make my feet sore. A few weeks ago a mile walk would make my feet feel like I just spent 14 hours hiking up Mt. Shasta.

I still have chronic nausea that has been sometimes difficult to control. A few days ago I had Billie pull over while I opened the passenger door and puked all over the curb and gutter somewhere on 17th Street. We were on our way to fill a prescription for another medicine that the nurse practitioner suggested for nausea. The Zofran and the Ativan were not working very well so she suggested we try Marinol.

I was skeptical that the marinol would work because I had not heard great things. Surprisingly it worked very well. I was sitting in the lounge chair watching the XC skiing on Universal Sports about an hour after I took a pill and I noticed something.... Besides having no detectable nausea, I felt like I was stoned. It wasn't mind blowing but it was definitely that familiar feeling from my younger days. I became much more talkative. On walks I felt like I had a little more spring in my step. I knew the nausea was still there but it was further in the background. With the Zofran I was still slightly nauseous.

I went to the wiki entry for Marinol and it took me straight to THC. It turns out that marinol is pure pharmaceutical THC. Duh..... No wonder I feel stoned. Don't worry. I can't OD. I would have to eat 3/4 of a ton of marinol in 14 minutes to achieve a 50% chance of morbidity . Another benefit side effect from the THC is an increase in my appetite. My appetite has not been this good in several weeks. In other words..... I got the munchies. Billie can vouch for that. Getting some of my appetite back will really help me to eat and prevent wasting. I see so clear now how nausea could dangerously effect weight. When just the sight of food makes you retch then it is too easy to lose weight.

I was worried that Billie would not like being around me because I have been talking a lot more. She assures me that so far it seems that the new effect of the THC is favorable.

I am hoping the chronic nausea is not a long term GVHD effect. Heaven forbid me having to have a prescription for THC for the rest of my life.

Strange that at the wiki page there was no mention about operating a vehicle on THC. I will have to ask the doctor because I will be needing to drive sometimes.

I am jonesin to get back on my bike. I don't know where to ride yet but it will be fun finding out. When we are allowed to take a road trip to Sacramento I will be sure to bring back a bike.

Take Care

I'm Taking Drugs

2009-12-12T15:21:00.000-08:00

This past Sunday I had a low fever and chills. The fever was just above the threshold that was designated to be the line where we called the doctor. We were told to go to the emergency room. After a long night with Billie sleeping on the floor, I was admitted to a room after 0500 AM. It turns out that I had an infection in my blood that appeared to be the same infection that I had earlier. The infection was persistent because it was appearing to come from the Hickman Catheter that was in my chest and a direct line to my vena cava. After five days as an inpatient I was discharged Friday after dark. I have a few more drugs added to my list that I take at home. Before all this started I had rarely taken any drugs. Occasionally I would take some aspirin after minor dental surgery. I had a bottle of aspirin that I bought in the 70s for road rash that was still full in 2004 when I started using it to medicate one of my old dogs. When I was discharged from the hospital the pharmacist asked where was my regular Pharmacy. She was surprised that someone my age had no regular pharmacy like some others are surprised that I have no regular lawyer. By my age I should have been taking sleeping pills, blood pressure medicine, cholesterol lowering medicine, ED medicine and all the other meds that people normally take. What's wrong with me?

Well all that has changed now. We are frequent fliers at the pharmacy. They love me so much that they call frequently before I need refills and they give us schwag like tote bags, pill cutters and med organizers. It helps that single pills for anti viral and anti fungal cost fifty dollars apiece.

Eventually I should be weaned off of all the meds if all goes well. Unlike other organ transplants a body can adapt to a bone marrow transplant so that graft rejection drugs can be discontinued after a year or so. In the meantime I am still severely immune compromised from the drugs that will ease Maura into my system. Many of the drugs have nausea as a side effect. I tried to wean off the anti nausea drugs a little early. That was a mistake.

Without all the drugs I wouldn't have a chance. Ten years ago the protocol for my type of AML would have invited a relapse. A nurse was telling me that "back in the day" they used to carry the vomit out of the oncology ward in drums. Because my nausea is under control I am better equipped to maintain a reasonable weight. With out those drugs it would be very hard to eat because everything would taste bad.

As I write this I feel as normal as can be with the help of modern scientific medicine. I am eating well and maintaining weight. We go on walks almost every day. It is pouring rain today so I will miss the daily walk. I feel strong and healthy. This is day 36 since my transplant. I will be able to go back to a more normal life in Sacramento after day 100. With some luck, all this will be behind me in a year or so.

Good Days. Bad Days

2009-12-02T17:58:00.000-08:00

It is now Day 26 since I received my bone marrow transplant. This is the time when Graft Versus Host disease should be starting to manifest itself. So far the symptoms I am experiencing are probably residual effects of the chemotherapy. I have nausea of and on that makes most foods that I usually love to seem repulsive. I have been trying to eat something most days if it is only ice cream. My taste buds are shot again. Acidic food often has a bitter and metallic aftertaste. It will be more than a month before my taste buds heal and I will be able to taste food again. On Sunday I had some really bizarre symptoms. Both my palms on the thumb side felt like they were dipped in boiling water. I had no pain meds at the time. I found out that if I held my hands in cold water then I could find relief. I toughed it out all night clutching frozen water bottles with both hands and tried to sleep. The next day we went to the clinic and were prescribed Vicodin and Lidocaine cream. The cream worked for a few hours at a time but the heat started to spread to between my fingers and my knuckles. I felt like I was putting out spot fires on my hands while the burning spread. I was trying to avoid using the Vicodin because of all the side effects that came with it. By bedtime I gave up and popped a Vicodin. In about an hour the pain started to subside and by the next morning it was completely gone. It has yet to flare up again. Only one Vicodin did the trick. The doctor said it was probably a nerve inflammation.

In the daytime if we are not going to the clinic we are exploring San Francisco and the vicinity. We drove down the coast as far as Pacifica and took a walk on the beach. The Pier is popular there because people are catching crabs. The surf last weekend was the highest I have ever seen. Waves were crashing over the seawall in Pacifica. They looked nearly 20 feet high. We continued down the coast but Billie stopped at Devils Slide. Huge drop offs and exposure like that terrify her. We have also been taking walks outside our apartment on the paths around Merced Lake. We took a few walks at Lands End near the Cliff House. I miss the old Playland at the Beach where we always used to go. Now there are just ugly apartments there. I was curious about Lands End because I have heard it is a great place to find Bolete mushrooms. There are pure stands of Cyprus trees that are good bolete habitat. It is too dry now to find anything now.

I am spending a lot of time at home too. My energy levels are pretty low for my usual self. I have good days and bad days with no predictable sequence. Hopefully the good days will begin to outnumber the bad.

Mike

House Arrest

2009-11-25T10:45:00.000-08:00

Tempo

Right now I am sitting on a recliner in our small clean apartment near Merced Lake. There is a view of the lake with a rifle range in the foreground. Good thing Tempo doesn't live here with us because she wouldn't like the sounds coming from the rifle range. The rowing team from SF State uses the lake. There are many other rowers during the day but the big boats come out at dawn and just before dark. There is also a bike path busy with bikes and runners. In the background are the hills of San Francisco and the Sutro Tower.

Billie and I are still getting settled. We are stocking up on food and housekeeping supplies. Billie moved some of our furniture from Sacramento. We bought a new bed that we can eventually move to Sacramento to replace our worn out bed there. The new bed is such a luxury after spending a month on the plastic hospital bed.

According to plan I was discharged on Monday afternoon. To be eligible for discharge I needed to be off the pain meds. I was having trouble swallowing due to the methotrexate. I went from Norco to Morphine and finally Dilaudid last week for about five days. My last dose of methotrexate was on day 11 and as soon as my throat began to heal I went cold turkey. I have to say it was the worst hangover of my life.

My engraftment seems to be going well. I am on immunosuppressants for the foreseeable future. I will slowly be weaned off of immunosuppressants to help control Graft Versus Host Disease. So far I have no detectable GVHD. It is still a little early for the GVHD to manifest itself.

According to the doctors I am the star of the transplant ward. Because my counts were above a certain threshold and climbing I was discharged as early as possible.

I was a little optimistic about the freedom I would be allowed. For now I am not allowed to go riding my bike alone. I can go on walks but only on paved paths. I will not be able to go into restaurants or any other businesses. When indoors at the hospital or in the halls of our apartment complex I must wear a mask. Billie is dedicated to enforcing all these restrictions. She is doing a fine job.

Tomorrow we will be having a mini Thanksgiving feast. We are cooking some turkey breast in a crockpot. It will just be the two of us. We will miss Thanksgiving in Chico this year and the Hericium mushroom picking ritual. I hope Scott and Meghan will send me a photo of the mushroom if it comes out this year. I first found the Hericium about ten years ago on a maple tree. It was about grapefruit size then. It is larger than a bowling ball now and always delicious. The dense sweet flesh resembles crab meat when cooked.

Breakout!!

2009-11-18T17:35:00.000-08:00

If all goes well over the weekend, I am going to be discharged next Monday the 23rd, just 17 days after my bone marrow transplant. I was completely surprised that it would be this soon. We had anticipated this just in case and we will be able to move into our little apartment near Merced Lake. Billie will come to the Hospital tomorrow and learn what it will take to be my caretaker. Mostly that will be flushing my IV line that is poking out of my chest. She will also have to dispense a few meds.

My blood counts are rising fast. All my doctors are surprised that the graft is taking this well this soon. Riding daily on the spin bike and walking the halls has kept my strength up. I will enjoy riding the streets of the city while I recover. Don't worry. I will be very careful and not let myself get hit by a car or crash. Billie and I can ride together or take short road trips in the car. I might not miss the whole mushroom season after all. By mid February it will be 100 days and I might be able to move back to Sacramento. There my next project will be to remodel the Sacramento house. The Tahoe house is going to be our vacation home. I might not be able to do real work until next summer if all goes well. During that time Billie and I hope to come up with some nice ideas for the remodel.

This tour of UCSF has gone very well so far. The doctor today said that I'm the rock star on this wing. He was saying that another patient wanted to know what it was going to be like to get a transplant here. The doctor said he should send that patient over to talk to me. "Oh yeah. Cake walk". I had only one very minor infection that a little vancomycin was able to beat back. Another drug had a few nasty side effects causing a sore throat and drying out my skin. Nothing that a few narcotics couldn't handle. I had a low fever one night but that didn't last.

I was so worried after my last hospital stay that I would exit here emaciated. That didn't happen. I somehow managed to gain weight.

Lucky So Far

2009-11-11T16:49:00.001-08:00

Billie with a good days catch of morels

I have to say that I must be one of the lucky ones in spite of this ugly disease. For one I have such a great family and support from friends. I have a 100 percent match for a donor too. My time at UCSF has been more like staying at a hotel than a hospital. I have no fevers or infections that are normal for the condition I am in. There is just one thing. I can't go anywhere. I really miss being outside and spending time with Billie. If only I could just walk outside with my IV pole for a little while. Maybe have a shot of whiskey at the corner bar. Jameson please.

One of the things I am missing now is all the good mushroom hunting. I hear the chanterelles are good this year all over.

My lead dogs Mojo and Otto

This time of year I also miss running my dogs. They are usually very fit and fast by now. They must be wondering where the heck I am.

Billie found a place for us to stay while I recover in San Francisco. We will be near Lake Merced. We looked at a lot of places. We wanted to be closer in town but parking was always a problem. If I wasn't in this condition we could probably get away without a car. I need to be close to the hospital and I am not allowed to use public transportation to prevent being exposed to infection.

The routine at the hospital is repetitive. I get checked by the nurses every four hours and more frequent if I am getting blood products. I ride the spin bike after breakfast and walk the halls after lunch. I read the paper and surf the web the rest of the time.

I am optimistic about my recovery and even possibly a cure. I will have to wait to see if this transplant takes and hope that there is minimum rejection. We should know a lot more about that in the coming weeks.

Take Care

Today is Day Zero

2009-11-05T14:20:00.000-08:00

I just received the stem cells from Maura. Thank you Maura. They came in a small bag similar to a transfusion bag. In less than a half hour they were infused into me. Mauras' cells are now making their way through my bloodstream towards my bone marrow where they will generate new blood and a new immune system. I can't say I feel anything yet. I will be on immunosuppressants for a while until they am sure this transplant takes. I am told that Maura is a 100% match. There is still a good chance that I will have some kind of Graft Versus Host Disease but I will most likely be mild in the form of a skin rash.

This is what they call day zero. My remaining life will be counted from this day on. It is kind of like a new birthday.

So far my stay here at UCSF has been uneventful. The staff has been very professional and knowledgeable. I have met a few of the other patients while walking the halls here. It is apparent that cancer does not have any preference for age, sex or race. I have experienced very little side effects from my recent round of chemo. The worst is a slight loss of appetite and a small bit of nausea.

I have been riding a stationary bike every day and walking the halls. Other than that there is not much action here. Volunteers deliver the SF Chronicle to me in the morning. The Chronicle barely resembles the Chronicle I grew up with. Leah Garchik tries to be Herb Caen but not quite.

Billie and I are still looking for a place to stay close by. We have a few likely prospects. Depending on how my transplant behaves I may be discharged in about three weeks. They will first have to observe my blood counts going up at least to a level where I am not neutropenic. My blood counts will continue to drop another week before they are expected to start rising. During that time I will be extremely susceptible to opportunistic infections. I won't be allowed visitors except Billie for a little while. I will let you know when my counts are up enough to have visitors.

Take Care

In My Room

2009-10-30T08:53:00.000-07:00

I am in my new hospital room at UCSF. I have a window facing south with a view of a hillside with eucalyptus trees and a peek of the top of the Sutro Tower. Outside the room down the hall there is a solarium with comfortable chairs, a TV and a nice view of the city looking north. The door stays closed all the time. A technician was in here earlier to check the air flow in here. He told me there is positive pressure and a HEPA filter that circulates the air at least eight times per hour.

I'm overjoyed that the food is profoundly better than Sutter. The bread is not always white and there is a good selection of fresh fruit. The meat is not overcooked and the sauces have subtle flavors that suggest a real chef is at work. I have only been here for a day and a half now so I haven't seen the whole rotating menu but so far it is very good. I asked about how the menu will change after I am neutropenic. The nurse assured me that there will still be fresh fruit and salads. Recently a nurse did a study here and found that there is little or no difference in the cleanliness of fresh fruit over canned fruit as long as the hospital does the selection and cleaning.

This morning a spinning bike was brought here. I will have to share it with another patient down the hall. I spent about 50 minutes on it already. The seat is a little too cushy like most spin bikes. I prefer the more bone like saddle that I am used to. The bars don't adjust forward enough to mimic my road bike but you can't have everything. I have my cleats with me and the pedals are compatible which is nice.

I have started my first round of chemotherapy with the drugs Fludarabine and Busulfan. So far my platelets have dropped along with my white cell count but it seems that my red cells are holding steady for now. The regimen is for five days. They will give my body two days of rest and then introduce Mauras' stem cells next Thursday.

Maura stopped in today to say hi after she picked up her Neupogen. She will have to inject herself for the next five days to stimulate her bone marrow to dump a whole lot of stem cells into her blood stream. She will be back here next Wednesday just down the hall strapped to a table while they harvest all those fresh stem cells. I will have to go over there and visit for a while.

Overall I still feel good. The staff keeps asking me if I am nauseous or if I have any pain. So far so good

Take Care

This is My Last Day at Home

2009-10-27T05:28:00.000-07:00

I had to postpone my trip to Washington for the dog races. Last week my doctor in Sacramento put the kibosh on my plans to go to one last race. "There will be other dog races", she said. If I was hurt and break something then it would be a huge setback. I crash enough just training my team. Racing increases my chances of crashing about a thousand percent. The factors of running new unfamiliar trails and passing alligator dog teams are just a few of the hazards typically encountered in a race.

Tomorrow I go to UCSF to prepare for my bone marrow transplant. I may be in the hospital for four to six weeks depending on how eventful my experience will be. I am hoping for a very uneventful time.

First there will be some more chemotherapy to wipe out my bone marrow. This should be the most intense chemo I have yet to experience. So far the chemo I have gone through hasn't been that bad. Chemo plays tricks with my sense of taste. I couldn't taste food or it tasted bad. I could swear that the fresh pineapple that they were giving me was prepared on the same cutting board that the kitchen had used to fillet raw fish on. Raw fish juice and fruit is not a good combination. Its enough to make anyone nauseous. In spite of that I had very little nausea during my first two rounds of chemo. I remember that during family road trips I was always the last one to get carsick. By that time my Dad so was tired of stopping all the time for all six kids that he just said, "Open the window and go. I don't want to stop now". Maybe that was why I was always the one to scrub the dried vomit off the station wagon after we got home. Since then a few years ago I saw another car with the tell tale splatter. I don't know why we didn't think of using a barf bag back then. With our family, a barf bucket would have been better.

I have been doing all that I can during my stay at home. I have gained my weight back and then some. I have been riding my bike regularly in spite of low red cell counts. I actually improved my speed some so that no more recumbents have passed me since those early days at home.

When I return to the real world I won't be the same person. I will have to protect myself from the sun because of all the carcinogens I have been exposed to. Billie can help me with that. Her episode with melanoma has made her avoid the sun like a vampire. If I ever get back on my bike again it will be long sleeves and tights all year long.

The one unknown variable will be Graft Versus Host Disease. I should get some GVHD but not too much. The doctors will have to try to balance it with anti rejection drugs. I need Maura's blood to take over the immune system in my body and attack any residual cancer cells that my own blood still harbors. Hopefully after a few months I can be weaned off the anti rejection drugs and go on with life. Commonly the GVHD attacks the skin and most can live with that. The worst scenario is GVHD attacking the liver.

The first few months after I am discharged from the hospital will be the most critical. I will be weak at first from low blood counts and susceptible to the million or so opportunistic afflictions. I can't see anyone except for my immediate caretakers and the doctors. I can get out but I won't be able to shop or go to restaurants. I will need to be revaccinated for everything I have ever been vaccinated for. I could easily be another victim of Jenny McCarthy and her scientifically illiterate horde of anti vaccination crackpots. All I need is to get whooping cough or measles because the population has lost it's herd immunity.

Overall I am feeling pretty stoic about this whole episode in my life. I can't say I am angry or afraid. I just accept that we have to do all that is possible and throw the best science we know at this beast. I am more worried about Billie and the rest of my family and friends and how they are going to deal with all this. The constant anxiety of this disease rearing it's ugly head again weighs heavily on us all.

Take Care.

Mike

It's Maura

2009-10-16T17:18:00.000-07:00

Today I heard from my social worker that the HLA testing has found a match. I was told that the match was so good in the first test that the odds are 99% that the further testing will verify the match. If I was to choose who would be the donor for my bone marrow transplant then I would probably choose Maura, my youngest sister. She probably has the longest telomeres because she is the youngest of all my siblings. She also lives closer than most of my other siblings which will make it logistically less complicated.

It so happens that out of all my brothers and sisters that Maura is the only match. I am so lucky to have so many siblings. I was told that the chance of a match was one in four. The way my luck has been going, I was not optimistic. I am so grateful for Catholic church and their rhythm method. I never thought I would be as happy as I am now for that surprise baby sister.

I remember feeding Maura with a bottle and changing her diapers when I was 11 years old. I am sorry Maura that I waited for mom to come home that one time so she could change your diaper instead of me. I remember you looking at me and crying and I knew what you wanted me to do. I always felt guilty about that because mom was a little late. You probably don't remember.

My platelet counts are dropping these past few weeks. I had another bone marrow biopsy done yesterday to see if the cancer is coming back. Preliminary results show that it is not as bad as I thought it might be. Still it is more urgent than before that I be admitted soon to start my next treatment to prepare for my bone marrow transplant. Tentatively I will be admitted the week of October 26th. That gives me just enough time to go to Washington to do one last dog race. The race will be over by 0830 AM Sunday so we should be able to get back to SF in time.

Wish me luck

Mike

Puttin the Muffin Top Back On

2009-10-09T11:37:00.000-07:00

I have been at home here for a month now in Sacramento. That is a lot longer than I thought I would be here. Getting ready for the bone marrow transplant has taken longer than I thought. The most likely donors are my siblings who have been doing everything they can to expedite the process. Their blood is being tested now and there should be results by next Friday. That will narrow it down some and there will have to be further testing after that. The doctors have been pretty vague about my future schedule. When I said before that I was going to go right back into the hospital at UCSF it was because the plan then was to go into my first round of consolidation chemotherapy. Now the doctors have decided to forego the chemotherapy and go directly to the bone marrow transplant. The urgency has something to do with my rare form of AML with the mutant FLT3/ITD gene. I have been to SF twice now with Billie for testing and preparation. I will go back Monday for a few more tests. Last time we took BART into SF and it was pretty easy to transfer to MUNI on the N line directly to the hospital. It was slower but much easier than driving the whole way.

Meanwhile at home.... I have started running my dogs again with my scooter. I started out with short runs along the neighborhood sidewalks. Now I am taking them down the street to the local park where we can run along the river for longer distances. I am seriously considering going to Washington state for the Pacific Northwest Dryland Championships. I was second there last year. I doubt I can win because my dogs have lost so much training time. It would be nice to go and just be part of that scene again. The dates are Oct 24th and 25th. The location is Roslyn Washington. Roslyn is slightly famous because they filmed the TV show "Northern Exposure" there. The way things are going I think I might still be waiting for my transplant. It might be my last opportunity for a long time to race my dogs.

I forgot to ask my doctor if getting off my ass was right for me. I went ahead anyway and started riding my bike again. At first I thought I would get out of breath and fall off but that didn't happen. My red cell count is still low but not much below normal. I can't go real fast but I have been riding up to thirty miles almost every day now. I have gained about two thirds of the weight I lost and my legs look a little more normal now. Only two recumbents (the shame) have passed me and that was a few weeks ago.

Atheist in a Foxhole

2009-09-23T17:38:00.000-07:00

Yesterday I went with Billie to UCSF to meet the team of doctors who will take my case from here. Like the first day I heard I had leukemia, there was a lot of blunt reality spoken. I asked for a prognosis and I got it with both barrels.

"You know why you're here don't you." asked the doctor."

"Yes.... It's the Flt3." I replied.

We then talked about options in protocol. One option would be the autologous stem cell transplant. That involves using my own cells to regenerate my blood. The prognosis for that would be a 20% survival rate. The other option would be the allologous transplant. That is when the donor is from someone else, preferably a sibling. The chances of a sibling match is 1 in 4 so I have pretty good odds there. The average outcome from an allologous transplant would be a 40% survival rate. Considering that if I do nothing, the survival rate is 0%, then I don't have much choice.

If the leukemia doesn't kill me then the treatment might. There is a death rate of 15% just from the treatment.

The factors that I have going for me is that I am relatively young and tough. The survival rates are skewed by others who were not so young or as tough.

In about a week I will be admitted to the hospital in SF for a round of consolidation chemotherapy. I will be sent home after that for about a month and then the fun really starts. I will then be given a round of chemo that will erase my bone marrow completely. When it is a blank slate then that is when the transplant will take place. During the recovery time that will be from 3 to 6 months I will be extremely weak and vulnerable to infections. During that time we will need to live close to the hospital in SF. Billie and I will need to find a place to live. I hear there is a nice trailer park in Pacifica. I am not sure if they allow dogs though.

I have a coordinator that will help with all the arrangements. Her name is Lisa. She will be contacting all my siblings soon and sending them a kit that they can take to a local lab where they can be tested for compatibility.

Right now I fell pretty good and am enjoying life here at our house in Sacramento. This morning I put on my roady garb and I took my old steel Colnago out for a spin in the neighborhood. I had to be careful to not get going too fast and get lightheaded. I still have a very low red cell count so I have to be careful. No old ladies on mountain bikes were able to pass me.

Da Ol Folks at Home

2009-09-17T15:17:00.000-07:00

I talked to Gene last night and he said he has never written a single email or ever posted anything on the internet so when I compare myself to him I don't feel so bad for not posting anything for this past week.

The first thing after getting discharged, Billie took me to a little taqueria in our neighborhood. It wasn't until then that I noticed that my sense of taste was not all there. I seem to smell food OK but only half of my taste buds seem to be functioning. I hope this effect goes away when my hair starts to grow back. It takes a lot of the pleasure out of eating when you have trouble tasting the food.

The doggies didn't seem to miss me much. I can tell that they like Billie a lot more.

Not much has really happened that merits mention. I have puttered about the house doing minor housework. I snaked the bathroom sink so it will drain properly. I changed the battery terminals on our little Ford Escort so that we can use it. The Ford was Billie's moms car . It's over ten years old and only has 35.000 miles on it. I have been driving around town and running errands.

Last weekend we took a day trip to our Tahoe house and picked up a few personal things. I was amazed with how well my little kitchen garden was growing. It's been about two months since I last saw the garden. I have it watered with a drip system on a timer. We picked a bunch of stuff to go and left before dark .

On Sunday we went to the local farmers market in Sacramento. The place was mobbed. I bought a lot of fresh fruit and some sweet corn.

On Monday we went to see Doctor Ong. My white blood and platelet counts are within the normal range. My red cell count is still low and slowly rising. I can tell because I seem to walk in slow motion. My body has atrophied from the cancer and from spending so much time lying in a hospital bed. I've lost about 15 pounds.

Next week I have an appointment in San Francisco with the medical team there. I may be admitted to UCSF for my next round of chemo and a bone marrow transplant. All this is part of the strategy that is going to attack the FLT3 variant of AML that I have.

The rest of the time I have at home is spent reading and napping. I have been enjoying watching the Vuelta de Espana on the internet this past few weeks. This morning a young Irishman, Philip Deignan won the days stage after a long breakaway.

The weather here in Sacramento has been unseasonably cool. I like spending time on the front porch swing reading and watching the action in the neighborhood. When Billie is home from work we like catching up on the days news on the porch swing.

I really am savoring this time at home with Billie and the doggies. This time next week I may be back in a hospital again.

Hypothesis of Origin

2009-09-09T12:31:00.000-07:00

I have had a lot of time to ponder just why I am a victim of this disease. I mentioned earlier, my childhood exposure to lead. Most of the literature about AML does not say much about exposure to heavy metals as a trigger or cause for Leukemia. All of the theories about the causes of AML are only speculative.

The most frequent culprit that is cited as a potential cause of AML is exposure to Benzene. Benzene is an organic chemical compound. It is one of the most common and interesting chemical compounds that students learn about in Organic Chemistry. The formula C6 H6 in a six sided ring is a basic building block for millions of other chemicals. Just remove a hydrogen or two and add some other shrubbery to the ring and you have another chemical compound. Organic chemists love the stuff. It is also a known carcinogen.

I have been exposed to benzene through gasoline and many other industrial solvents . When I was a younger cyclist I used to use gas as a solvent to clean my bike. I don't remember ever wearing gloves. Because I liked my bike clean, I probably exposed myself to a lot more benzene than anyone else in the general population. I more often would buy solvent instead of gas. I often bought solvent in bulk from the local Beacon station. Solvent was less volatile but most likely had just as much benzene as gasoline.

I also used a lot of "White Gas" for my campstove.

I phased out the use of solvent and gas for cleaning my bike by the mid 1980s but by then I had used it a lot for at least ten years.

Now about 25 years later, the exposure to all that benzene may have finally caught up with me. I was young and dumb. I felt immortal. Benzene my have been my culprit but maybe not. It is only speculative. There is also the chance that there was a genetic component that brought on the AML. We will never know.

My Counts Are Going Up

2009-09-06T11:41:00.000-07:00

It has been about 18 days since my last chemotherapy ended. Finally my blood counts are slowly creeping up. My marrow appears to be replacing my blood cells. A week ago my white blood count was .1 and today it is .6. My platelets are at 39 when a week ago they were 17. I haven't had a transfusion in more than a week. My red cell count is still staying the same but will soon start to climb. The white cells and platelets are short lived so the marrow makes them at a faster rate. The red cells can live about 40 days so they are made at a slower rate.

I have what they call petechiae all over my legs but mostly on my calves. Petechiae are red marks caused from capillaries breaking just under the skin because of my low platelet count. The dead skin that has accumulated by layers on my feet is looking like a thick crust. I can't wait to get home and soak and scrub my feet with a pumice stone.

My hands are cleaner than I have ever seen them. There is not a trace of ground in dirt in my palms. I have no callouses.

My hair is still there but it has quit growing. I haven't needed to shave for about three weeks. My scalp still has hair but it's a little thinner.

My fevers have subsided and I no longer feel the need to nap off and on in the day time.

I may be discharged for a while, possibly before the end of the week. It depends on how my blood counts are. I don't know how long I will be allowed to leave until I have to come back for another round of chemo.

There is no word yet about whether I will be needing a bone marrow transplant.

Overall I feel as good now as I have since I entered this place. I can barely feel the mouth sores that were bothering me so much last week.

Billie comes in twice a day and stays later in the evening. In the morning she brings me fresh coffee from Peets. Sometimes we watch Netflix movies. Most of the time we sit and talk or read the daily paper. Tonight I am looking forward to a break from the food here when Billie will be bringing in some homemade pizza. I am so tired of the food here. The menu rotates the same items every week. I don't think I can ever look at another carrot coin.

My daily routine is the same. The IV pumps tethered to me are constantly ticking and buzzing . Doctor Ong visits once or twice day. The nurses take my vital signs about every four hours and dispense my daily drug cocktail. At 0400 AM the night nurse draws my blood and a few hours later the results come back. Lately my night nurse seems as excited as I am as we watch my counts go up. She can't wait to deliver the results to me. My meals come at o700 1200 and 0500.

I can walk laps around the floor. There is an atrium that I can go outside to and sit in the sun for a while. Out on the floor there is a scale. I have lost about ten pounds since I have been here. Most of my weight loss appears to be muscle mass. I can see it when I look at my legs. My thighs seem a lot thinner. My whole body does not seem to have much tone left.

As I write this I am listening to "the Prairie Home Companion". I have KQED public radio playing through iTunes. KQED has been in the background most of my stay here.

I really miss home. I miss most of all being with Billie sleeping next to Billie. The doggies are going to be happy to see me. I really miss them too. I hate to say I have a favorite. Mojo is the happiest dog and he is so much fun to just watch. His tail moves at a constant 200 wags per minute. He holds a ball or a grapefruit in his mouth at all times if he is not throwing it at your feet. The grapefruit is a kind of a ball. There is a tree outside that is constantly dropping balls. The grapefruits don't last long before they become split and crushed. He then will start to manically eat the grapefruit wincing the whole time from the sour taste. The trash is always full of disintegrated grapefruits. Mojo is also the best watchdog. He sounds like the most vicious dog you have ever heard from behind the closed front door. No stranger would dare enter after hearing that sound. He won't ever attack though and prefers to go in his crate and bark from inside there. He is actually the sweetest dog. If you show him a ball he will instantly forget the watchdog stuff.

I feel I am closer than ever to home sweet home. I can't complain about the care I have been getting here at this hospital. I made friends with much of the staff here. I still have a long way to go fighting this cancer. For now though, I can't wait for a break from here at home.

I've Been Sick

2009-09-04T12:56:00.000-07:00

During the time since my last post I have been running high fevers and sleeping an awful lot. I had another outbreak of painful mouth sores that throbbed day and night. I was able to knock back the pain with narcotics most of the time. When I was awake I was only half awake. If I sat up and tried to read then I would find myself falling asleep in a short while. Since Wednesday I have gone cold turkey off the narcotics. I still endure some painful swallowing but I have a clearer head. The fever still lingers. I have to remember to drink lots of water to stay hydrated and to quell the fever. When I sleep for longer than a few hours then my fever creeps up and I have to endure more poking from the lab. The lab cultures my blood to see if there is an infection. At one point I had a staph infection but the doctor managed to knock that back with another cocktail of antibiotics.

Now for the good news..... My bone marrow biopsy results came back on Monday and it showed no detectable cancer in my marrow. There was no detectable anything else either. My marrow is at present empty. Slowly my blood numbers are supposed to start coming up on their own. When my white blood cells are high enough I will be discharged for a while. I will still have to come back for further doses of chemotherapy.

I didn't think I would be lapsing from posting here for so long. I will try to be a little more frequent from now on.

Norco Haze

2009-08-29T08:40:00.000-07:00

This past week has gone by in a haze of norco, benedryl, and morphine. I spent much of my time sleeping. I was barely waking long enough to read a few short pages before I would doze off again. I developed a sore throat on Tuesday and it raged all week. I think that today I am finally on the other side of this episode. I am getting a lot of transfusions. This week I was given four units of red cells and three units of platelets.

Yesterday I had another bone marrow biopsy. I won't know the results until Monday. A good result would be no detectable cancer in my marrow.

I was able to write an article for Dog and Driver Magazine. I compare training dogs using a scooter and a bike. I prefer the scooter. I am trying to get ISDRA to only sanction one rig for the one and two dog classes. Right now the classes are broken up into bikejoring and scootering. The scooter field is profoundly diluted. Most competitors are bikejoring. I have done a lot of bikejoring and I know it is a much more dangerous way to run dogs. The problem is that most people already own a bike. It is going to be tough to get all my competitors to buy a scooter.

Universal Sports is streaming the entire Vuelta de Espana live. This will help make my next three weeks a lot more interesting. Today is the prologue. There are two American teams in this years Vuelta. For some reason the race is starting in Holland. This race marks the return of Alexander Vinokourov who is coming off a 2 year suspension for blood doping. He just started to a deafening silence.

This past week I have been following the news of Jaycee Lee Dugan. I remember when she was kidnapped in 1991. The cold case has haunted the Lake Tahoe communities for all these years. Reading all the comments about the articles I am shocked about how many people are ready to torture and kill the perps. I think the death penalty just brings the people and the state down to the level of the perps. I am ashamed that my country still sanctions the death penalty. We are down there with Iran, Malaysia, Saudi Arabia and a bunch of other great countries like that.

Day 1

2009-08-24T11:16:00.000-07:00

Taking Deni's advice, I entered the emergency room at Tahoe Forest Hospital in Truckee CA at o700 AM, Monday July 27th. I was the first patient of the day and I didn't have to wait long. A doctor came in to check me out. He looked at the ugly sore that was rotting away the roof of my mouth. He asked a few questions and left. A lab tech came in and drew some blood. A little while later another physician accompanied by the first one looked in my mouth.

My primary care physician showed up at about 0900 AM and asked me a few questions. He then dropped the bomb. He said he thought I had Leukemia. My blood was 90% worthless cancer cells. By this time my Sister Marti was with me and she was reciting the blood numbers to Deni back in Anchorage. "That can't be true!" Deni said. "Read them to me again."

It all made sense to me now. I was out of breath with the slightest exertion because I had no oxygen carrying red blood cells. My white cell count was low and that is why I kept getting infections that were not going away. I was also out of platelets and that explained why the slightest insult was bruising me. I hardly ever bruised before.

Cancer was the farthest thing from my mind. I thought I just had an infection that a few antibiotics would take care of. I had no clue as to why I was feeling so tired and out of breath. Normally I am a strong, healthy adult male. I should have known that I was not normal. It is amazing how deep a person can go with denial.

I owe my life to Deni. I might have dropped dead the next day if she didn't tell me I needed to go to the emergency room. I wouldn't have gone to the emergency room myself because I felt that what I had was not any kind of emergency.

I was admitted to the hospital and I was immediately given a blood transfusion. Dr Lombard my primary care physician worked hard to find me a place in Sutter General Hospital in Sacramento. I knew I had a long way to go and I was alive.

The Easy Keeper

2009-08-23T16:12:00.000-07:00

In the fringe subculture of dog mushing there is a term we often use to refer to this or that dog as an "easy keeper". An easy keeper is a dog that inhales his food, maintains a good weight, rarely gets sick, is a hard worker, is happy all the time and gets along with the rest of the team.

One of my objectives while staying at this hospital is to be an easy keeper for the staff that cares for me every day. I have been here for 27 days now. It would be easy to become a professional patient, barking orders from my bed and complaining about every little thing. In the back of my mind though I know that I am building a relationship with the staff here and when I am too sick to move I will need them more than ever to care for me.

One of the first days I was here, my regular doctor said I really didn't have to thank them so much for every little thing they do for me. I replied that I couldn't help it and she should blame my mother.

I see the results of my careful cultivation of relationships. I have become the easy keeper in the oncology wing. Instead of getting a continuous rotation of nurses that I was getting earlier I have just a few nurses that probably request me for their shifts. They can trust me to do whatever I can on my own without calling them on the intercom for every trivial thing. I know the routine by now. Like my dogs that lift their leg to help me to put on their harnesses I lift my arm for the blood pressure cuff, offer my finger for the oxygen reader and lean over to breath deep at the right time so they can hear my lungs with the stethoscope. Every morning at 0400 AM I present my arm that has the PIC line for the daily blood draw.

I can be a pain if I have to. Today I had the substitute doctor come in for a visit. The day before I refused to shake his hand when he presented it because I had no idea where his hand had been before he entered my room. He had not sanitized his hands like everyone else did after entering my room. He said, "I will have to examine you anyway" and I gave in and let him handle me. I even presented my hand and he shook it.

When he appeared today he did the same thing. He walked right up and was about to touch me but I stopped him. I asked him to sanitize his hands please. He replied, "I did wash them earlier". I had no idea what "earlier" meant and how many patients he had handled before me. Billie was sitting there and she said he put his hand on the door handle and then the door before he walked up to me. He then said that that sanitizing foam was too greasy and he didn't like it. I replied, "Hey, it's my life not yours". He relented and went over to the foam dispenser and did what I requested.

I have to say that it was Deni, my friendly nurse in Anchorage married to my brother Kit that warned me, "You have to watch the doctors. They are the worst". I was forewarned to scrutinize and Deni was right. The doctors are the top of the pecking order in a hospital and if you want to keep your job, you let them do what they want. Being a patient, I was not in danger of losing my job. I had the license to open my mouth and let him have it. He was a little shocked I could tell. I was not going to be some complacent gomer and let him get away with the disrespecting this patient.

My Artificial Immune System

2009-08-21T19:00:00.000-07:00

All of us hear every day from Jamie Lee Curtis and thousands of other sources about the immune system. This or that remedy or potion will "boost" your immune system. Everybody is aware that we have an immune system. It is the buzzword of the decade. We have become deadened to the concept and we think we know all about it now. Move on to the next Oprah episode.

Actually most people do not understand the immune system. There are whole fields of science dedicated to the immune system and millions of physicians publishing papers every day about new studies. We still have a lot to learn about our immune systems. It may just be a buzzword to the public but in the real world of real science it is serious business.

Right now my immune system is tethered to me. My IV pole has a cocktail of antibiotics and an assortment of other drugs. I take anti virals, anti fungals and and several other drugs that are designed to kill any hostile organism that can potentially be lethal. The common cold could kill me in the condition I am in. If I didn't walk into the emergency room the day I did I probably would have died the next day. I had what they called "bled out". I had almost no more blood left . My bloodstream was full of cancer cells

Right now my white blood cell count that is there for me to fight disease is about 40 times lower than the level I need for a minimum to be discharged from the hospital. My red cells are so low that I need transfusions about every four days. I also need regular platelet transfusions to help me clot in case I start bleeding from the most minor insult.

It is important that everyone understand this because for the next few weeks I could die easily from the slightest insult. In a few weeks after more chemotherapy my blood numbers should start climbing. That time I may be able to take visitors. In the meantime I will have to only allow siblings and Billie to visit me.

I am used to living alone and I am not the type of personality that knows what boredom is. I have this laptop with plenty to write about and an infinite amount of research to do with the help of the internet. I have Billie visiting me every day twice a day and that is the best situation there is at this moment in time.

Right now we are just trying to be cautious. In a little while I will be able to see you all. I am getting the best of care. I love all my family and friends but you are all also vectors that could deliver the lethal dose of some opportunistic disease. I am driving this point home because it is so important. It is all about the choice between death and survival. I want survival. This disease is cancer in one of it's most ugly manifestations. My doctor told me today that Lance Armstrong had a pretty easy row to hoe compared to what I will have to go through. Keep your hopes up and I will do all I can to insure that I make it through this episode in our lives

Tour of Denial, Stage 4. The Crash

2009-08-21T12:12:00.000-07:00

After the Tour of Nevada Classic I resumed my life going to work 40 hours a week as a carpenter and running my dog team on weekends. Billie, my wife usually comes to Tahoe in the summer from our other home in Sacramento. My work is at the Lake . Because I am a carpenter I can get higher paying work at Lake Tahoe. The Tahoe economy is a little more immune to the outside world. Billie works for IBM and has to work in Sacramento. We traveled 2 hours to see each other when we were dating and when we married we continued to do the same. So far we haven't been able to break from this scenario and live together.

In the spring and fall I spend more time in Sacramento. I love riding the American River bike Trail. I use my old Colnago that I bought in 1979. The trail is flat so I can ride with an intimidating tight gear ratio. I often get a lot of compliments about my old bike. Of course like any self respecting road cyclist I wouldn't show up anywhere without my bike being sparkling clean and oiled. Sacramento has a bike subculture going strong and the bike trail has a lot to do with keeping it thriving. I can ride 50 miles without encountering a car. I am accompanied only by other cyclists and a few joggers that usually behave by running off the pavement. This past spring I hadn't been making much time for riding the bike trail. My legs were still hairy and I didn't feel like my old self.

At my work I started to notice that I was slowing down and starting to get out of breath when carrying weight or climbing stairs. I just ignored it and kept on working. I had a cold that wasn't going away. Usually a cold lasts about a week and then I'm fine. This was weird. I came down with some painful canker sores in my mouth. This was unusual because I hadn't had a canker sore since I was a child. The sores went away after about ten days but then I got another sore soon after.

About this time we had visitors to our Tahoe house and Billie and I played host to two old friends. On Sunday we all decided to go on a short hike at Tahoe Meadows. There is a beautiful trail at 9000' elevation with a sparkling creek and a wide open mountain meadow teaming with song birds and wildflowers. We ended up hiking about 2 miles and I found myself hardly keeping up with our two 60 year old friends. I didn't say anything. The canker sore in my mouth had grown into something much worse. It was growing fast and opening a huge crater in the roof of my mouth.

That next week I tried to get an appointment with my primary care physician but it had been so long that my records were somewhere else. I was told that I might be able to get an appointment sometime the next month. I worked a full forty hours that week in the hot high altitude sun. My appetite was fading. I did not feel like eating much. Food didn't taste good. I was out of breath climbing stairs in my house.

When Billie arrived for the weekend she was alarmed. We made an appointment the next day at a doc in a box that was in our medical plan. That morning we were at the Urgent Care Clinic in Carson City NV first thing in the morning. The doc there looked at my urine which looked normal and peeked at the sore in my mouth. "That could be cancer" he said. He gave me a few numbers to call of a few local ENT specialists and sent me on my way.

That night my sister Marti and her husband David arrived to spend a few days in our Tahoe house. Billie suggested I call my sister in law in Anchorage who was a nurse for a little medical advice. She said, "You need to go to the emergency room!". I knew that the emergency room at the local hospital was a zoo on Sunday night filled with mountain bikers with broken elbows. I decided to go there first thing Monday morning.

Early Monday morning I told Marti and David that I could drive myself and I would probably be back in a few hours with a prescription for antibiotics.. That was the last time I saw my house at the Lake.

Tour of Denial, Stage 3

2009-08-20T08:42:00.000-07:00

Mid to late spring is one of my favorite times to get out and ride. The creeks are full and the mountain flora is just starting to awaken and bloom. There is not a lot of dust on the trail so the traction is better than normal. I should have been going up to speed by now but instead I was losing my enthusiasm. Everything seemed to take so much more effort. I would still take the time to clean my bike after every ride and bring it inside. My bike began to spend more and more time inside as I rode less and less.

I could still run my dog team using the scooter. As the days got warmer I was only able to run the team on weekends and in the early morning. By now I had bought a new helmet camera for recording my dog runs. Running the dogs did not take a lot of energy on my part. I was getting that sensation of speed vicariously through my dogs. It was one of the few sources of adrenaline type fun that I still had.

In mid June on Fathers Day I went to Nevada City to watch the Tour of Nevada City Classic. Lance Armstrong would be there with his team mates and it was promising to be a pretty good show. An old friend Grant Boswell, had a son in the junior race and that also added interest for the day. I had met his son last as a young child and now he was a strapping sinewy roady just like his dad. My old friends Mike and Marsha were also there and their daughter was in the woman's race. It was a great day for the next generation of cyclists in my small world. I often meet up with old friends in Nevada City and we catch up. One thing I couldn't do was suggest we go on a ride. I was ashamed that I was so out of shape at this time of year and I didn't talk about it. I walked a lot that day in the hilly little town. I was not in very good walking shape either. I was starting to get out of breath without much exertion.

Something was going wrong but I didn't have a clue. I just thought I was lazy. When I looked in the mirror, I had the bread face of an out of shape cyclist. I was sure my friends could see it too. My legs were hairy. As an old roady I looked forward in the spring to the time I felt good enough to shave my legs and don the garb of the roady. I didn't feel worthy to shave yet. I really missed that day with clean shaven legs, a sparkling road bike and in full lycra, spinning an easy 100 rpms down the road. That day didn't come this year.

Tour of Denial, Stage 2

2009-08-19T02:16:00.000-07:00

My riding was not improving much on my usual trails. I know I should have cleaned several sections by now but I just thought it was because I had let go over the winter a little. The snow was gone by now on much of the mountain in my backyard up to at least 8000'.

I came down with a real bad case of the flu. At first I didn't know what I had. I thought the flu was what I had during childhood . I remember nausea,vomiting and diarrhea. Most likely what I had as a child was rotavirus. The flu was something new. With the flu I had a very high fever with intense cold symptoms along with body aches and prostration. It took me about eight days before I could go back to work. I don't like missing work. Being sick is something I seldom do.

Coming off the flu I was not improving my riding. At this time of year I would have liked to visit my friends in Chico and ride the Wildflower Century. I was there last year and did it in a leisurely 6 hours on my road bike. There was no way I was ready to go this year. My progress as a cyclist was going backwards.

Meanwhile all this time I was still running my dog team regularly. The team was in top shape and I didn't have to go out of my way physically when training them. I just stood on the scooter and they did all the work. A few spots I might get off and run. As the dog team progressed I had to run less and less up the hill. That was fine with me.

Tour of Denial Stage 1

2009-08-18T18:54:00.000-07:00

The snow melts earliest on one of my favorite trails for mountain biking. By then I am ready to hang up my XC skis. This past winter I skied a lot less because I don't like to ski without dogs. I wasn't skiing at night. I barely did any skiing on weekends. Out of character for me, I had let myself go a little.

I can ride out my house and be on the singletrack after one block of riding pavement. It is my dream to ride that early in the spring at Lake Tahoe. As usual I try to get on my bike at the first possible moment after the snow melts.

I was just a little out of line with my usual fitness goals for the early spring. The first mountain bike ride was not that unusual. I had to push over a few patches of snow. I had to push up a steep pitch that I would be riding up in a few weeks because that was the way it always was in early spring. I shed my ski legs and put on my riding legs.

In a few days all the snow had melted on my trail.

My three dog team languished a little towards the end of the ski season because of my diminished program training them. Soon though, my team was up to top speed riding a fast four mile trail in the Martis Valley near Truckee. The rig of preference is a scooter with 26 inch wheels and front suspension. Three dogs was above the maximum I would allow my self to scooter behind. I rotated my little team so that I always ran at least two dogs.

So far, my early riding and dog scootering season was progressing like any normal year.

Prologue

2009-08-18T05:42:00.000-07:00

Last winter I decided that after the first night skijor that my dog team was too strong for me to control. I was 56 years old and I didn't want to do it anymore. My oldest lead dog "Flash" was still alive at almost 16 years. I remember he was 11 years old when he told me he didn't feel like racing that day. He decided to stay in the car and I let him because he had never before refused to jump out of the vehicle and be instantly ready to go. I raced with only one dog that day.

Without daylight after work, I had every year until then trained my team using an extremely bright headlamp. I could see clearly every bump and rut in the seldom groomed trail while on skinny XC skis. Always with at least two of my dogs towing me on skis I could travel high speeds at night. Over the years since 1995 my team and I traveled countless miles over countless mountains over countless nights. I behaved like this while living at North Lake Tahoe. I was in Kings Beach to be more precise.

I only entered one skijor race last winter at Frog Lake near Mt Hood OR. Ellen Donoghue for the first time smoked the trail to win ahead of me her first time ever. Another local 24 year old also passed me the second day. For someone used to winning, I still had a great time. I went as fast as I could.

Denial

2009-08-18T04:42:00.001-07:00

Most everyone has heard the athletes axiom, "No pain. No gain." The saying has always befuddled me at least as much as the concept of the Holy Trinity. For me the saying should go, "No gain. No fun." Whether running or cycling, the act of going fast, faster and ball's out, has always equaled fun, more fun and as fun as it gets. Where is the pain? I don't get it.

For this reason I resemble my lead dog Mojo and the rest of my dog team more than any human I know so far. Mojo also thinks that running is fun, more fun and more fun than eating.

Am I in denial? I honestly don't think so. Perhaps I am a hedonist. I won't deny myself any fun. I can't explain it. It may be explained perhaps by Oliver Sacks, but I don't get it.

I might have inhaled too many lead (Pb) fumes as a child while watching my dad make the million or so bullets that he was always busy shooting. He liked to shoot and I loved to make lead toy soldiers and cannons with my own lead. Could the Pb in me from 1959 explain why I have Acute Myeloid Leukemia? I doubt it. Might it explain why I am a Chico State graduate and not Berkeley material? I don't know.