Wednesday, November 25, 2009

House Arrest


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.

Wednesday, November 18, 2009


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.

Wednesday, November 11, 2009

Lucky So Far

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

Thursday, November 5, 2009

Today is Day Zero

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