Ugh

I've been on the couch for three days now. I was supposed to work Friday but was too tired and had vertigo pretty bad. Saturday was worse. I had the spins and couldn't stand upright for more than a few minutes. Today was worse still. I was lightheaded, had vertigo and felt very weak.

Yesterday I tried Dramamine a couple times. The vertigo and "light head" feel a lot like car sickness. I think it helped some. The downside is Dramamine still makes the fatigue a lot worse.

I'm pretty sure that I was dehydrated today. Thinking back to yesterday I used the restroom about 10-15 times, 3 times just last night. Today was about the same. It's only 7pm and I think I've peed about 8 times. I drank three glasses of water and feel quite a bit better now.

I'm hoping that the vertigo and "light head" go away over the next couple of months. I'm hesitant to drive unless I'm having a really good day, and so far those don't happen very often. Wendy goes back to work tomorrow which means my beautiful chauffeur won't be available any more. I'm a little bummed about that. At least all the time I've been spending on the couch since this started hasn't been alone. If I see one more "Law & Order" rerun, I may scream....

Changing Horses and a Good Score

We went to Stanford this morning for my first blood test after resuming the Gleevec 2 weeks ago. I am happy to report that it was my first "normal" blood count since this whole pile of shenanigans began. My white cell count is now 4,400, my hemoglobin is 14.5 and my neutrophils are at 63.7% This is excellent news. It means that my response to treatment is headed in the right direction.

My next checkup is in 6 weeks when they'll do a standard CBC blood test just to make sure things are still on track. After that, they'll do a more in depth test in December to determine whether I've achieved a cytogenetic response (no leukemic cells in the blood). If I understand correctly, this will be a FISH test, hopefully without another bone marrow biopsy. From everything I've read, the average length of time to achieve a cytogentic response is 12-18 months. December will only be 6 months from diagnosis, but we're still hopeful.

We've also decided to stick with Stanford as my primary oncology care provider. Dr. Coutre appears to be a specialist in CML and Gleevec and we kept getting bounced back to him anyway with questions that my original oncologist couldn't answer. The minor downside is the size of the Stanford clinic compared to Dr. Cohen's private practice. It was nice to be on a first name basis with the office personal and have blood test results in 10 minutes. At Stanford the blood results usually take about an hour to come back and you see a different hematology fellow each time you're in the clinic. In all, I think it's a good trade, at least until things stabilize and my treatment goes into "maintanence mode".

In miscellaneous news I got a prescription for Compazine today for the nausea I'm experiencing as a side effect of Gleevec. Ativan didn't work, Dramamine put me to sleep and Jolly Ranchers only get you so far. Wendy and I joked today that most of the medication I'm currently taking is to counteract the side effects of other medication. I take Gleevec which makes me nauseous and gives me bone pain. So I take Advil to help the bone pain but that makes the nausea worse. Than I need to take an antiemetic to help with the nausea. Who knows, maybe I'll get another prescription for some side effect of the Compazine (assuming it works). I read that it can cause seizures, maybe I'll get an anticonvulsant for that....

A Good Day

Today is the first day I've felt "normal" in over a week. No bone pain, no nausea, no vertigo, and I actually felt energetic (I didn't get out of bed till 11am, but we'll let that slide for now). It was fantastic!

I went to work today and actually did some work. This evening Wendy, Leu and I walked downtown and enjoyed the wonderful weather and tasty salmon tacos on the patio at Rosy's on the Beach.

Tomorrow morning it's off to Stanford. I need a checkup to see how my blood is doing now that I'm back on the Gleevec.

In addition to my own personally fabulous day, I found a news article about research being done in Australia that has made some advances in targeted therapies for blood cancers. I love science... :-)

Family Support

My brother Todd had orange wristbands made that read "FCML" (you can guess what the "F" stands for). Each person in my family is wearing one for me.

In the photo (starting from the chubby leg and moving clockwise) are my nephew Cole, my dad, my brother Todd, my brother Ryan, my mom, Cancer Dog, myself, my wife Wendy and my sister-in-law Ellen.

We visited my family this weekend because, well, I just wanted to be close to my family. On the drive up Thursday evening I was very sick. I tried Dramamine as a nausea remedy but it put me to sleep in about 20 minutes, so I'm not sure whether or not it worked. The bone pain was back on Saturday and I took 3 Advil. It helped but made me so sick I spent the rest of the evening on the couch sucking Jolly Ranchers.

I've received several sympathy cards in the mail from my family and a few friends of family (including my pre-school teacher, you have to love growing up in a small town...). It's comforting knowing that people are thinking about me and I can't express how much a simple gesture such as a card means to Wendy and I.

Road Trip!

Wendy and I drove out to Montrose, Colorado on 7/25/08. We left at 5am with the dog and made it to Montrose at 11pm. For the first 3 hours Leu whined uncontrollably, I think he was nervous. In Baker, he finally flushed some bad mojo out of his system and seemed better after that. It's a good thing since we were contemplating leaving him on the side of the road if he didn't shut up... :-)

We spent the first few days at Wendy's parents just relaxing. A short day trip to Ouray was pretty much the only outing. The rest of the time we visited with family and played with the dogs.

On Monday my blood was expertly drawn by Alicia at Montrose Hospital. A couple hours later we had the results. My neutrophil count is back up in the normal range. My overall white cell count is still low though at 3,600. That afternoon we drove over to Wendy's brother's house in Fort Collins. We took highway 285 (through Park County, home of the infamous South Park) for the scenery instead of highway 70 through Vail. To celebrate my last night off Gleevec for the foreseeable future, we got tanked. I picked up some wine and some Odell 90 Shilling and we proceeded to drink ourselves under the table.

Needless to say, Tuesday was spent sleeping and eating and not much else. We had Big City Burrito for lunch (possibly the best burrito I've ever had). I'm officially back on the Gleevec as of tonight.

Wednesday we played on Horsetooth reservoir, just outside Fort Collins with Jeremy and his boat. I barefooted for the first time ever!

Back in Montrose on Friday we went Jeeping with my father and mother-in-law to Yankee Boy Basin (the pictures at this link are from someone elses trip) behind Sneffels mountain. It was a great ride with some amazing scenery. It's the closest thing I've seen to the Swiss Berner Oberland in the United States. Here's a shot of me at in at the end of the jeep trail posing as if I'd done anything other just ride in the jeep.



And here are Wendy and I after being bumped around for 2 hours in my father-in-law's Rubicon.


On Friday night I began to feel the familiar fatigue, nausea, light-headedness and dizzyness from the Gleevec. Saturday I spent entirely on my in-law's couch. I had forgotten how crappy I feel on this drug. We had originally planned on returning home on Saturday but decided to stay an extra day since I was in no shape to travel.

Sunday and Monday we made our way back across the Western United States to good old California. Wendy did all the driving except for 1 hour on Monday. I was too out of it to be safely behind the wheel.