Wednesday, January 27, 2010

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.

Friday, January 22, 2010

No News on Day 76

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

Thursday, January 14, 2010

The Naked Guy

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


Friday, January 1, 2010

Happy New Year

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.