Hurry Up and Wait

A week of more tests, more appointments, more plans, more goals.  I think we're finally on the right track, the direction we're meant to go, and now we can rest for a few days.  This all happens so fast, and yet so slow...

I joined the clinical trial that had been offered to me.  The trial changes the chemotherapy from what I was originally told (4-6 rounds of 2 drugs) to 4 rounds of 2 drugs, followed by 12 rounds of one drug (I got that backwards in my previous post).  I will be randomized into a group that receives that one drug every week for 12 weeks (12 total treatments), or every-other week for 12 weeks (6 total treatments).  The best part of the clinical trial is Laurie, the coordinator.  She will be with me every step of the way, explaining the process, answering any questions I have, and getting me test results much faster than I would normally get them (for instance, she called me 15 hours after my chest x-ray, lab work and EKG to ensure me that everything looks beautiful).  She's like my Cancer Concierge.

Our oncologist assures me that, given the recent Oncotype score (remember, go big or go home!) the change in chemo is necessary.  They aren't changing the chemo so that I qualify for the trial (which was my original concern).  With a 28% chance of metastatic recurrence, they want to do everything they can do now to stop the cancer from coming back.  As a friend put it, if the cancer metastasizes "you can't put the genie back in the bottle" and the battle becomes bigger and more complicated.  Now is the time to attack it.

We got a copy of our Oncotype DX report, too, which was...well...interesting, confusing, and enlightening.  If I read it correctly, my treatment plan lowers my chance of metastatic recurrence to around 18%.  That might still seem huge - it's not 0, that's for sure - but it's far better than 28%.  And there are other things I can do to lower than rate, too, like exercise, diet, attitude, and faith in life and possibility.

We also learned that my original pathology report was incorrect; my cancer does not have progesterone receptors, which means I am "PR-" or PR negative.  So my diagnosis now officially looks like this:

IDC, 1cm, Stage Ia, Grade 2, 0/7 nodes, ER+/PR-, HER2-

We have this week "off" of cancer, kinda like a vacation.  It's interesting how if feels like cancer begins to define you.  This week, nothing exciting.  Next week, bone scan and echocardiogram on Monday; port placement on Thursday; chemo school on Friday.  Then a week off, and treatment begins.

I went wig shopping yesterday, which kinda made me think I don't know if I really want a wig.  I have some great skulls caps, and bought a few hats I can embellish with all sorts of shiny objects.  I have a few scarves I can use, too.  I didn't think I'd miss my hair, but now that I'm going to cut it, and likely lose it, my heart is a little sad.  It'll grow back, I know - but the loss becomes an outward manifestation of what's going on inside.

For right now, I can still pretend I don't have cancer.  But life has changed, and will continue to change, and I will make the best of it - hair or no hair.  :-) 

"For what it's worth: it's never too late or, in my case, too early to be whoever you want to be. There's no time limit, stop whenever you want. You can change or stay the same, there are no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. And I hope you see things that startle you. I hope you feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life you're proud of. If you find that you're not, I hope you have the strength to start all over again." - The Curious Case of Benjamin Button