I will feel better tomorrow

That’s what I’ve been thinking for a couple of weeks now. I’ll feel better tomorrow. Or the next day. Any day now I’ll rebound from the effects of the chemo – which I last took back on June 10. But instead of getting better during this break, I’ve mostly gotten worse.

My GI system’s been a mess – undoing progress I’d made since surgery. I’ve had migraines day after day. I’ve had a fever for a week and a half. I haven’t had an appetite in a week and a half either. I sleep a lot. I have nightmares.

At one point they had me go in to the cancer center to get bloodwork done to make sure I didn’t have neutropenia, which is low white blood cells. If I had neutropenia, I would have been admitted to the hospital, given antibiotics and something to boost bone marrow production. My counts were low, but not too low. So they cleared me to start the next round of chemo.

And I was like, what? No, seriously? My options are either being admitted to the hospital or cleared for more chemo? That seems to be the protocol – no balance. No adjustment, no modulation. They just drive it as hard as possible until you’re in failure mode, then go to heroic great lengths to make sure the patient doesn’t die of the cure.

I was still so obviously sick – I figured I’d wait a day or two until I was at least a little recovered first before starting the next round of chemo. That day or two turned to three or four days and then a week. My “recovery week” has stretched to two and a half weeks now, and I’m still not significantly better.

Am I done with chemo?

It’s been 3 months, and there seems to be a difference of opinion about whether I need 3 or 6 months. We would love to get a second opinion because we don’t have a lot of faith in our doctor in Albuquerque. She’s not very experienced and isn’t even a specialist in colon cancer. She seems to be just following the protocol. I’d like to be able to consult with someone who knows enough and is experienced enough to make some judgment calls, and do some troubleshooting and customizing.

Another doctor, a colon cancer specialist at a prestigious center in Seattle, is the cousin of a coworker of John’s, and she has emailed us this:

“…most folks have moved to 3 mo of chemotherapy for low-risk (T3N1) stage 3 colon cancer. The difference in DFS is only 1-2% for staying 6 mo and may be less for an individual patient. On the limited info that you have given me, I don’t see the rationale to necessitate 6 mo (though that was the standard up until ~2 years ago).“

This specialist was initially willing to give us an appointment and a second opinion, but it her department has a policy limiting her ability to offer telemedicine to states that aren’t adjacent to Washington State. It’s not about insurance – our insurance already said they’d pay (and we’d it pay ourselves if we needed to). It’s an internal policy. So she can’t do a records review or provide an official second opinion, but she has very kindly offered to call us for an informal chat. We are looking forward to that on Tuesday. We also speak again to my current doctor tomorrow.

Meanwhile, here is a very good and very relevant article, in case any of you like to read some more technical information. (For reference, my diagnosis was stage 3, T3N1.)

What Is the Optimal Duration of Adjuvant Therapy in Colon Cancer? 

If you don’t feel like reading that article, I don’t blame you. Here’s a picture of my orchids in the kitchen window at night. These are all second or third blooms, from orchids I bought for my office last year and the year before, when I was working in Santa Fe. There was a Trader Joe’s across from where I worked, so I would walk across the street and buy an orchid when I was having a bad day. The orchids are doing very well this year.

To send Kristina a comment, email turning51bykristina@gmail.com