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

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

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

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

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

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

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