Late August Update

I see that it’s been a while, so let me catch you up. 

Remember my last post, where I talked about how the side effects of Sutent weren’t too bad?  Less than 24 hours after I wrote that I ended up at the emergency room after the advice nurse told me to come in. I had a low grade fever (~100.2) and chills, apparently a UTI.  The doctor gave me some antibiotics to take home with me and stressed that if my temperature went up again, or if I wasn’t feeling better, that I needed to come back in. 

The next day, more fever and chills, so back to the ER. Poor Reil – he and the kids had tickets to a ball game, and I pretty much forced him to leave me there. My friend, Inta, met us there and watched over me as I lay on a bench in the waiting room, looking every bit the hobo. A little later Yvonne and Maureen  showed up, too, and all 3 took good care of me. 

I was taken in, and copious amounts of blood were taken. Eventually they moved me to the observation part of the ER, and the next morning they made the decision to admit me.  My white blood cell count was very low, and they worried about a kidney infection or c-diff, both of which were ruled out. 

I spent most of my three days in the hospital sleeping while they gave me iv antibiotics.  After coming home, I remained mostly couch bound while I  got my strength back. 

My oncologist and I decided that we both wanted to try to make Sutent work, so last Friday I started a new cycle at 3/4 dose. I’m feeling good so far, but believe  me when I say I’m paying much closer attention to how my body is reacting. 

Catching up on Sutent

I’ve been on Sutent for almost two weeks now, and so far, it’s going ok. The best change is that I don’t feel as wiped out as I did on Inlyta. I mean, I’ve actually cleaned the litter box – voluntarily. Both of them! And today, Molly and I spent the day shopping in and walking around San Francisco, which would have been unheard of a month or two ago. We only walked a mile (plus the shopping), and I came home exhausted, but I couldn’t have done it while on the other medication.

I am noticing side effects cropping up. I’ve got hand-foot syndrome, which shows up on me as redness and a sensation of burning on my palms and the soles of my feet. It’s been manageable, but it is becoming more uncomfortable. I will probably contact my doctors to see if they have any tricks. The worst part of the hand-foot syndrome is that using my sewing machine seems to make it worse. Probably the vibrations of the machine.

I’m also experiencing changes in my taste buds. It started with spicy foods (and tooth paste) being painful. Now I’ve found that I can’t taste salt, and sweet things taste off. Those are hard. No more french fries or ice cream for me. Even water tastes metallic. Kind of gross.

And finally, diarrhea. So much fun, but not too bad yet.

All of these side effects are ones I’ve had before, and it is nice to have some ideas of how to deal with them. I’m also bracing myself for the side effects to get worse. There’s a reason why Sutent is prescribed in cycles of 4 weeks on, 2 weeks off. I hope that it won’t get too bad or that if it does get bad, it’s only towards the end of the 4 weeks.

For now, I’m just thrilled that I have enough energy to do things with friends and family. And that I don’t feel like I have a fog in my head. I kind of feel human again!

Cancer’s funny, right?

I got to spend Saturday afternoon with my friend, Rob.  Fun, as always.  (of course)  Over dinner, he mentioned a comedian, Tig Notaro.  I’d never heard of her before that, but three hours later, an online friend mentioned her, too, and I figured that obviously, I had to check her out.

So glad I did.

She’s hilarious.  And she’s a cancer survivor.  And she jokes about cancer.  I love it!

I’ve now watched a number of YouTube videos, as well as the Netflix documentary, Tig, and I find her incredibly inspiring.  She’s done in stand up what I’d only dream of being able to do with this blog – touch lots of people, and make jokes about cancer to them!

Ok, so she actually makes good jokes and gets paid for it, while I make jokes to help me get through those uncomfortable times. Anyhow, I hope you’ll enjoy this bit from the Conan O’Brien show.