I don't want nouns, I want verbs

I trotted around doing my Christmas shopping this year, more or less just like I have done any other year. It might not have been that way.

I got really good news recently that the experimental chemo I'm on is working; the tumors are shrinking. I've had two scans since starting this line and both have shown progress in the right direction. The large ones are obviously smaller, and the smaller ones are "mostly cleared up" according to my oncologist, who was so excited at our last visit that he told us the news was good in the hallway en route to the room!

There are seven of us now, taking what I've started referring to as the "Texas Cocktail" for short (the drugs are bevacizumab, paclitaxel, and topotecan....it's a mouthful....). The name comes from the fact that our SCCC tumor registry, and the doctors trying to do some proper science on SCCC, are at the MD Anderson Cancer Center in Texas. Two of the women women, both of whom had metastases to various organs and random body cavities, have since had clear scans. Metastases automatically means both of them were stage 4. At least one of them was told she had 6 months to live two months ago, and that is clearly not the case now.

If you've been following along (or you know that the bean shaped thing in the picture is my liver and therefore I have metastases), that means that I am also stage 4. I never heard the words "Stage 4" or "6 months", it's not my doctor's style. I don't really say it out loud, and honestly I don't really think about it too much, but I know it, and have known it since my surgery was first cancelled in April over some "slightly larger" spots. But they're shrinking now, and I expect them to continue to do so and, if they would be so kind, disappear all together.

Not everyone with SCCC has had good news recently. I know what it's like. Leaves a person wondering how best to maximize their time.

I've been thinking about this on some level for a while. I actually started a list of places I want to go / things I want to do, and people I want to go there / do them with, when I was first diagnosed. I started thinking about it again recently when I watched a movie called In Time (yes, I watched it on Netflix just because it had Justin Timberlake......), about a future society where the currency is literally time. When you go to work, time is added to your life. When you purchase something, it is removed. It costs two hours of life to ride the bus. The rich are immortal, the poor might have to walk to work if prices go up, or risk dying before they are paid. The movie was obviously commenting on wealth disparities in society, but I got something different out of it (the movie itself was mediocre, I'm bothering to mention it because the concept is neat). What I kept seeing while I watched the movie was how the perceived value of time differed between characters. This was demonstrated predictably in the movie, with the rich folks being bored with life because they never take any risks that might cause them to die accidentally before using their immortality. The rich accumulate lifespan for the sake of it, and so the poor boy teaches the rich girl how to have fun yaaay.

Cliche aside, I'm attempting to apply the principles to how I choose to spend time (and money that goes towards time-spending activities) more consciously.

So, I officially request of my friends and family who ever might think to send me a gift. Please don't send me nouns, I would prefer verbs*. That is, I want time with you.

Whether it's a trip to a play, a weekend roadtrip, or just a visit with coffee and some crochet, I don't want things, I want do DO fun things WITH people I care about. So, make a date. Invite me to a concert, for a walk, or to keep you company while you clean your room. If I don't feel well enough, I promise to say so. Keep trying, I'll say yes eventually.

* If you already got me a noun, it's wonderful and I'll love it don't worry :P

Thanks Coach

A couple of weeks ago I saw an ad on facebook to nominate your coach for some sweet prizes. "I'm going to nominate Jen Boss," I thought, "she's the best coach!" So I put a little reminder in my calendar on the deadline, because my memory is a sieve (I blame the chemo) and I can't even make it from where I'm standing to the notepad before I forget what it was I was going to write down. I even made a little virtual postit in google keep, which I have started using because it works nicely on my phone, so I can carry it in my pocket and hopefully avoid the forgetful distance between myself and the physical notepad.

So the due date comes along and the little virtual postit pops up in the morning, and I sit down to write 250 words over my oatmeal (yes, I've been eating oatmeal, sorry paleo world but it soothes my poor intestines). I finish a mighty fine 250 words and decide I need to run some errands, I'll read it over and find a picture to send in with it after lunch.

So errands and lunch go by and I come back to my 250 words to submit them but, of course, because it's now the due date and sometimes things don't submit properly on the due date....well I failed to nominate my coach, and that's all there is to it.

Fortunately, Alli is a teacher and therefore much more organized and much less forgetful and certainly less procrastinate-full and actually submitted a nomination on time so, please go vote for my awesome coach :)  VOTE HERE

Here's what I wrote and failed to submit because I am lame:

Just over one year ago I was diagnosed with a very rare, very aggressive form of cervical cancer (Small Cell Neuroendocrine). The moment I announced my diagnosis, coach Jen Boss began organizing a fundraiser and she hasn’t stopped organizing them since. All told, with Jen’s help (and a super supportive community) we have raised over $12,000 for my treatments and for my cervical cancer research Foundation, Love the Snatch.

Jen has also been integral in helping me deal with the loss of strength from chemotherapy, and the ensuing emotional distress when I could no longer do air squats unassisted. Whenever I have a strength-related meltdown, Jen is ready with substitutes that are manageable at my current level, but will still help maintain strength without making me feel depressed in the process! Jen’s substitutes are more creative than your average coach and have included such inventions as the rope climb machine (battle rope over the rig with plate attached; hoist the plate up to the bar and back!

I’ve been treating this fight like a long WOD, and just like in a real WOD, Jen is coaching me through it. With her help, I am retraining my new radiated body, maintaining as much strength as possible, and not just surviving treatment, but coming out stronger at the end. I would love to have this opportunity to give back to someone that has influenced my life so positively.