OK. Treatment #10 has not yet happened. My blood work (specifically, my Absolute Neutrophil Count - ANC) was not up to snuff by a long shot. To wit, I need an ANC of 1.5 to be infused with the toxic soup and mine was 0.7 this time. I was frustrated enough to demand that they draw another blood sample and rerun the analysis. The second sample came back 0.6... In no way was I getting my tenth infusion of FOLFOX this week. Very big bummer. And I decided that a third sample would put me into the "scary vulnerable" category related to susceptibility to colds and infection.
But the very worst part of my frustration this time was the absence of any explanation and/or advice about what to do next. Beyond "see you next week," I felt like we were hurried out the door. My doctor was in a meeting and told the nurse coordinator that I should not receive additional neupogen, because it apparently wasn't working. We just rescheduled ourselves to be at the clinic on every Wednesday for the foreseeable future, not knowing if my ANC will even recover to 1.5 after this additional week of rest. And then waited for some information...
...Which I eventually received today via a phone call. Next week I will have my blood work done in town the day before we are scheduled to travel to OHSU for infusion #10, and if the key components (ANC, white blood cells, and platelets) are not above the protocol's minimum values we will not have to spend half a day driving to and from Portland. This is a better arrangement than the previous schedule. And I am to avoid germs as much as I can by staying away from crowded places where my chances of catching a cold (or other infection) are highest. Like, ummmm, churches, bars, and grocery stores. And I am supposed to become more fanatical about clean hands. The clinical study protocol allows up to six weeks between treatments, so I can still be in the study. But that may have me on this toxic soup delivery schedule well into the new year. Yippee-skippy, don't ya know.
I still have some questions, though, that I intend to email to my doctor. Like, at what point do we hear my body saying, "Enough already!" and then decide to stop the poison? And, is there anything that I should be doing (or not doing) that will help my bone marrow/blood recover? And what the heck happened to the Colorado Rockies in Game One of the World Series??!?
Yup, the world keeps spinning, in spite of frustrating days, unexpected news, uncomfortable silences, and unbelievable pitching.
Thanks for reading my blog, and caring.
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2 comments:
Ed, try to remember that the next step is always your choice, not the doctor's. I understand your frustration with lab results that are not always good news. But you are bigger and stronger than the cancer.
Mikey
Ed,
I only had to delay one treatment, but I remember feeling like someone had just said to me, "Oh, did we say you could get out of prison in 1 year. Oops! Sorry, we meant 10 years."
For what it's worth, I really think the guided meditations helped me stay healthy throughout. The chemo one specifically addresses blood cells and how to keep the chemo away from the ones we need. I'm not sure how much I believe that we can control our blood cells through intention alone, but even the most ardent skeptic has to acknowledge the plecebo effect, right? I mean, *something* in our minds affects our bodies. If you want to try, I'd be happy to burn a copy of the CD and send it along to you.
Here's to cells full of vim and vigor!
-Megan
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