Wild Ride June 4, 2013

Friends and Family,

Have you seen my brain? I think my emotions kicked it to the curb somewhere along the way.

In the past 12 days, since I started Tarceva, I have taken scraplets of information and tried to use them to project how long I'm going to live. It has done me as much good as asking a fortune teller at a carnival.

Within days of starting the Tarceva the pain in my hip got much worse. Taking an ice cube's worth of information, I was sure that there was an iceberg's worth of worsening cancer under the surface. I started daydreaming about needing a hospital bed in our living room, since at this rate I would be unable to climb the stairs pretty soon.

To compound the situation, I started getting a skin rash and ulcers in my throat. Those are common side effects, but I started worrying that they would get so out of control that I would have to discontinue Tarceva. Also, if those symptoms got bad, maybe Tarceva was attacking some other internal organ, which it can do. (Never mind that it's rare.) It was one more reason why Tarceva might be taken away from me, leaving me defenseless.

My body was telling me I'm getting worse, and my brain wasn't doing a very good job of convincing me look for the positives.

I tried emailing my doctor several times, but different nurses kept answering the individual questions. I finally emailed him and said, "I need to talk to you." He called me, on a Saturday evening, from a conference in Chicago, within an hour. That, my friends, is much more dedication than I have any right to expect. I appreciate Dr. Lopez-Chavez very much, and this is just one of the reasons.

That's when things started to turn around. Dr. Lopez-Chavez said that there was no chance that the cancer could grow quickly enough to make the pain escalate that quickly. He suggested I stop doing exercise that involves my legs, since that was the only likely cause. He also told me that the side effects are a good indication that the Tarceva is working! I got a clear feeling that he truly expects the Tarceva to shrink the cancer completely, and that he’s not just trying to encourage me.

Genevieve had been telling me that for the past few nights in bed I no longer sounded like a freight train breathing in her ear. (Funny how I had discounted the sudden improvement in breathing, but not the sudden worsening of hip pain!) I asked my doctor about this: It couldn't possibly be the Tarceva working this quickly, could it? He said YES, it absolutely could be!

Since then I've been testing my breathing, and I may be imagining it, but I think it feels less constricted. I really, really want to believe.

Also, Genevieve and I thought back over the previous week. We had been hiking, walking all around Bend and Eagle Crest, played with the grandkids in the pool for hours... The increased hip pain made sense. Once I backed off, the pain subsided.

Now I have two ice cubes' worth of information, and I have decided that there is an iceberg's worth of GOOD NEWS beneath the surface! We'll know for sure in another 7 weeks, when I do my next CT scan. Meanwhile I'll try not to get too carried away, but I admit that it will be hard to stop myself from trying to read the tea leaves.

In the last email I told you that the Tarceva may cause a pimply rash, but I was OK with it as long as I didn't get the teen mood swings. HA! I've had a lot more mood swings than pimples! I guess I can deal with that as well. However, things will go much better if I go back to my mantra: Live in the NOW. Things are pretty great in the present!

I guess I'm OK with the mood swings too. However, I may need a favor from you. If you see my brain somewhere along the way, please let me know. I may not notice that it's missing for a while.