Saturday, February 27, 2010

Back On the Bike

My 1979 Colnago Super

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

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

Consequently my foot swelled up and it was even more painful to walk. By this past Wednesday I had healed enough that I was able to don my riding shoes and take my old steel Colnago out for a spin. I was surprised once again how natural it felt to be on the bike. I felt much better riding than walking. For some reason my feet still get very sore from standing and walking. Riding does not seem to put as much pressure on my feet.
Not knowing how far I should go in the state I'm in, I only went about ten miles the first day. The next day I felt fine going fifteen miles. I bought a cool app for my iPhone that is a bike computer. It maps my ride with the GPS, gives average speed, max speed, elevation gained and a bunch of other stuff for only $4.99. Thats how I know I went fifteen miles.
Today was clinic day in San Francisco, so the whole day was spent traveling back and forth dawn till dusk. We went to our apartment on Merced Lake for the last time, picked up a few items, cleaned the place and checked out for the last time. From now on clinic days will go faster when we don't have to go to the apartment and move stuff out. By the time we left SF the traffic was snarled with flooding near highway 1 and Doyle Dr. Heavy rain made the trip slow all the way home. Billie and I arrived home both tired and testy.
I neglected to bring my meds with me when we went to the clinic so I downed them all at once when I arrived home. Consequently I am now up at 3:15 AM writing this because I can't sleep. I usually take the prednisone in the afternoon so I can sleep at night. Oh well. It's not like I have to get up and go to work the next day. I have never been one to worry much about how much sleep I get. I seem to always get enough sleep somehow and have rarely felt sleep deprived.
The weather has put the kibosh on our plans to go to Tahoe this weekend. Driving in a snowstorm on I-80 crowded with other weekenders does not seem very appealing right now. We haven't spent a night there in about four months now.
Here is a nice youtube clip I found that pretty much describes my whole outlook on life starring some of my favorite heroes including Richard Feynman, Carl Sagan and Neal DeGrasse Tyson among others.

Saturday, February 20, 2010

Home Again

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.

Friday, February 5, 2010

Milestone Day

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.

Monday, February 1, 2010

I Have My Camera With Me Now

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.

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