Have you heard the story of the Chinese farmer before? It's about a farmer and his son who have various things happen to them. Things that seem good, and things that seem bad, but the farmer responds to each thing without judgement and with the knowledge that what seems bad might be good, and what seems good might be bad.
One of my doctors reminded me of this story at our first visit. He said this is how cancer treatment is. You go in with a plan, a timeline, a treatment regime, an expected outcome. Along the way things will happen and you will change directions, and you won't always know what is good or bad right away.
I've been reminding myself of that story as I go through this journey. I'm trying hard to react as the Chinese farmer does, but it's not easy! I want so badly to know when this will be over, and how it will end, but that simply isn't decided yet. It can't be predicted and the best I can do is stay on the ride.
Some things in my journey that might be good or might be bad (or both!)
- My cancer is Her2 positive, hormone negative. Much like the villagers in the story, all the western doctors told me this was a great thing. There are very effective treatments for Her2 + breast cancer! The downside here is that your body has Her2 receptors in nearly every cell, everywhere. Which means these medicines have a very wide side effect profile, and can be tough to tolerate.
- I have both GSTM1 and GSTT1 deletions. I have done some DNA testing prior to this for my chronic illness and luckily knew about these gene deletions. I found a study that said that people with these deletions are more likely to get breast cancer young (bad!), respond better to chemo and other therapies (good!), but detox those therapies more slowly and therefore have worse side effects (bad!).
What's next?
I'm halfway though the planned chemo! Of course the Chinese farmer tells me that the planned chemo is just a plan, and not to hold on too tightly to it.
I'm running a big round of tests to see where I'm at so far. This is known as re-staging. My integrative oncologist is big on testing frequently to see what adjustments need to be made, and I strongly agree with that. (My medical oncologist doesn't check anything until all treatments are done ๐) I'll be checking my heart function (this gets affected by the Her2 medicines), getting an MRI to see how the tumors have responded, checking cancer markers in my blood, other blood tests to see how my body is holding up, and testing for circulating tumor cells.
The one test I've run daily since this started is just feeling my tumors. I'm the one who found it in the first place, and I've stayed really in touch with how it feels and where it is. I think this is super important!
And I can't feel it anymore! ๐ญ
After the first treatment my tumors shrunk significantly, and as of now, I can't even find them. Of course that doesn't mean they're gone completely, but it is a very good sign and a much bigger response than expected. I can't wait to see what all the other tests show.
I also have to decide if I want to go 4 weeks between rounds again. I will make this decision every time from here on out. I'm waiting until midway through week 3 to decide and will base it on how I'm able to digest food and how much weight I have gained back. The good thing here is that my integrative doc said he's confident with all the other stuff I'm doing to keep pressure on the cancer I won't lose anything by waiting. But I just want it over with!
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Choices I made and things I learned at this stage |
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1) Knowing my body, including things like gene deletions, gives me the ability to confidently make decisions like dropping one drug, lowering the dose of another, or pushing treatment out by a week. I know my body responds more strongly than other people, both from experience and from testing, so I can confidently make those decisions with no fear.
2) I chose to re-stage and check in on my progress even though my medical oncologist said it wasn't going to change anything. She must not have heard of the Chinese farmer ๐.
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With love and gratitude,
Elizabeth
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