Sunday, December 20, 2009

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

Saturday, December 12, 2009

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.

Wednesday, December 2, 2009

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.