Follow by Email

Saturday, May 14, 2011


If my cancer journey is like Lord of the Rings—or any epic movie, really, where many battles are waged—then this past week has been that tranquil time between battle sequences when the sun comes back out, the heroes shower off the filth and grime of war, and small bits of merriment occur.

The pendulum did seem to have swung in the direction of the awful there for a while. That first week out of the hospital was largely characterized by stress and discomfort. The stress part I covered in the last post, I believe, but the discomfort of the chemo I had tried not to mention.
However, now that I'm not currently suffering, it seems worth describing.
It did end up making me feel pretty miserable, but not in the way I expected. It's not a I'm running to the toilet every 10 minutes with the stomach flu kind of sick, as much as an all these extremely uncomfortable things are happening in my body at once kind of sick. So much for the "feeling bad because of chemo is a self-fulfilling prophecy," idea.
One of the worst side effects was developing Thrush, an oral yeast infection that occurs most often in babies but apparently also can happen as a result of taking lots of steroids. You get white patches all over your mouth, tongue and throat that not only look nasty but feel like the open sores that they are. It makes chewing and swallowing a cruel and unusual punishment.
Then there was also the fatigue, both extremes of the bowel spectrum, nausea, bone pain and rigid muscles in my back that made me squirm and flail like an upside-down beetle whenever I laid in bed to go to sleep. Overall, a layered combination of unpleasantness from which there was no escape but time.

Luckily the time passed pretty fast, relatively speaking. By the beginning of this week, most of my side effects had dissipated. On Tuesday, I was mostly just coasting on fumes of emotional exhaustion when we got a call from my Stanford Doctor, letting us know that their lab actually hadn't run one of the Very Important Blood Tests they needed, and could I please come back so they could get another blood sample?
The news almost broke me (and Annie) when we first heard it delivered from Barb's anxious lips. Another harried trip to Stanford, full parental panic signals blaring, this time under the disturbing auspices that the professionals there failed to do the job right the first time? Nooooooo!!!!! Say it aint so!!!!

Yet fate decided to pee down a little golden shower of good luck upon us that day. Nicholas Benitez—one of my best friends since High School—happened to be standing in the kitchen when we got the news and volunteered to drive us himself. God bless you Nicholas, and the Nissan Cube you rode in on!
This trip to Stanford was terrific. Annie, Nick, Kia, and the Cube proved to be a recipe for travel success. Relying only on our iPhones to guide us, with Hotel Zico on El Camino Real as our home base, we navigated to and from downtown and the Cancer Center with ease. We watched basketball in a bar and ate pizza by the slice. We ate snickers bars in bed in our hotel room while watching back to back episodes of HGTV. We spent less than 45 minutes in the Cancer Center the whole time. Having it feel more like a roadtrip than a Cancer Mission was far and away the greatest thing. A glorious and necessary break from everything that had come before.

A couple things about the second trip to Stanford:
When I arrived there, back at the lab, they still didn't have the right test ordered for me. Luckily I had the presence of mind to ask the woman as I was checking in what tests had been ordered in the first place. She read back the most common test, the very same blood test I get done on a weekly basis in my local doctor's office.
"No Flow-Cytometry?" I asked, shocked that I'd driven four hours the day before and they still weren't about to get the right test.
"No," she said, smiling up at me, "Just the CBC. I'll have to call and check about that."
So much for the idea that the Stanford Cancer Center, with all of it's polished interior decor and live harpists strumming in the hallways, can't fuck things up just as bad as a small-town cancer clinic.
I called my doctor on his cell phone and cranked up the indignation in my voice—or imagined I did, anyway—as I let him know that there I was, standing in his lab, and they were about to give me the wrong test. Again.
He reacted with appropriate concern and rushed off the phone to fix the error. I know he must have given the lab staff a verbal bitch-slapping, because they all got real peevish with me from there on out, as if it was my fault somebody got called out on not doing their job right. Whatever. They took my blood, I made sure it was going to the right place, and I was Out. Of. There. In enough time to still get free parking, too!

Now, before we all get carried away on a silly wave of hate and frustration, let's just focus on the good news: that second set of test results I went all the way back for came back very positive, which is to say, no cancer cells were shown lurking around in my blood. None at all! This confirmed what the miserable PET scan had also indicated. That the cancer levels left in my body are so low, they're not even showing up on most tests!
Of course, this doesn't mean I'm cured yet. We know from the diagnosis and the past behavior of the cancer—mainly, it surging back after that first wee round of chemo—that it is an agressive lymphoma. So even though there aren't hordes of these cells swirling around throughout my body anymore, all it takes is one or two to be left behind and sooner or later they'd regain numbers and take back over. Still, it's a great comfort to know that the treatment is working as intended. That my spleen and liver are still the size they ought to be. That things are, for the moment, going well.

This is just the sort of necessary inspiration I need, as I'm set to go back into the hospital for more chemo on Monday. It would be absurd to say that I'm looking forward to it, but there is a part of me—the part that's feeling better, obviously—rallying up a bring it on attitude. I survived the last round, and it fried the shit out of all that cancer. I handled it once, and I can handle it again. It looks like they won't be increasing the dosage yet (there's still 4 more rounds after this, and I'm told it will get stronger) so I pretty much know what's coming.
I'm also banking on the fact that I'll be going into the hospital for a 5-day chemo course with sound mind and body. I fully believe having my wits about me at the beginning will improve my experience this time around. The whole calcium-dementia scene was so disconcerting and alarming, I think it carried into the overwhelming confusion I felt during that whole round of treatment. This time, I feel prepared.
Annie and I also prepped by writing down a list of goals to keep me sane while in the hospital. They include helpful ideas like showering at least three times that week, getting dressed every morning, and leaving the room once a day. It's all about the routine.

And again, before I get swallowed up by another Chemo Trip and whatever is to come from that, I wish to send love and gratitude back to the people everywhere who are supporting me and my family through this crazy journey. I have received so many funny, thoughtful and precious words and tokens from a circle that is wider than I ever knew, and seems to keep subtly expanding. I was striving for hand-written thank you notes, but am finding that I can't even keep up with the flow of letters, toys, crossword puzzles, crazy hats, and everything else people have sent to show their support. I am so blessed to have every one of you in my life, and to be on the receiving end of all this goodness.
Thank you!


  1. kia,

    this picture of you is beautiful. you inspire me. go get 'em gurrrrrrrrl!

    love cara

  2. I'm happy to hear you are beating those cancer cells back. I was also thrilled to hear you are eating pizza...have you done any cheeseburgers yet? with bacon of course? Too bad Mearles isn't there anymore. Eating is good. Glad your road trip was successful. You have lots of love around you. Love and Hugs to You.

  3. Please add to your schedule:
    Eat more Snickers in bed.

  4. Love the photo. Perfect match for the entry. Snickers, it's not just a breakfast food ! Now I want one, and a slice of pepperoni ! Power food, ehya !

  5. I, too, love the photo. Out in the sun has got to be a good thing. (we here on the east coast are thinking we're never gonna see the sun again!!!) Thanks for keeping us informed of all your travels. So glad the chemo is kickin' butt. Keep up that "bring it on" attitude.