Saturday, December 22, 2012


Well, the PET results weren't so great. I have three active "tumor" sites, all small, none new, but nonetheless, they're there. Yep.

So, there's one tiny spot in my lower left lung, one tiny spot in the liver duct, and a little patch of "chest nodes" next to my lung, which have grown slightly since the last scan. All of this means that my current chemo regimen isn't working anymore, and I have to switch to a new type of chemo, stat. I will start right after I return from Ohio in the first week of January. I was hoping for a bit more of a break than 3 weeks, but I also don't want to lose any ground.

So far I've done a total of 24 months of chemo. Isn't that INSANE? Imagine that: two years. Shouldn't I at least win a Purple Heart, or receive diplomatic immunity, or something? COME ON. I'm really proud of my little body for holding it together so well. Sure, there's been some collateral damage (my abdomen looks like a shark bit me, my hair's getting weird, I'm too skinny [no, it's not as cool as you'd think], my nose bleeds every day, I can't really feel my feet anymore, I'm constantly cold, I lack my normal energy levels, etc.) But I can't complain. Many people tell me they'd never know I was on chemo at all. (Now I sound like I'm bragging. No one wants to read a braggart's blog. Even if the writer has mutant colon cells growing in far-off organs.) All of this is really just a way of saying that I know I can handle more challenges.

I'm determined as ever to shrink this cancer. My body feels strong. (As I keep mentioning.) My resolve is intact. Sure, I'm frustrated (as hell), baffled at this latest turn, scared at times, terrified at others. But, and maybe it's just the holiday season, the bulk of my time has been spent filled with gratitude and good cheer about the many thing that ARE going right in my life. My kids, alone-- I love being alive.


Tomorrow, we head back to Ohio for Christmas. I cannot wait to go. We're going to have a terrific time. I'll deal with this shinola when we return. Onward ho.

Thursday, December 20, 2012

PET scan tomorrow

Wow, that was fast. I have a PET and CT scan scheduled for tomorrow, Friday the 21st. It's funny how nebulous test results can rocket you to the front of the line in the scan department. ("Funny" of the non-hilarious sort.)

If my insurance hadn't been so stringent about denying me a PET scan for so long, they would have actually SAVED themselves money in the long run. Because now I'm repeating a CT scan that I just took three days ago. And if we learn something new, the expensive treatment I've been getting might not have happened. But that's another story.

Hopefully I'll receive my PET results tomorrow night. Then I can go into the holidays knowing what's really happening. As Neil said, "We can handle anything, so long as we know what we're dealing with."

Also, I am feeling happy and festive today, in spite of it all, for some reason. We had 7 kids over today and 3 moms. We decorated cookies and played. The house is full of Christmas cheer. We're doing all right.

Wednesday, December 19, 2012

CT scan results


I have to get a PET scan as soon as I return from Christmas break. The CT showed spots, but Dr. K can't tell if they are alive or dead. Or inflamed from my recent surgery. Here's a snippet from an email I sent earlier, since I don't feel like rewriting it. It's choppy, but you'll get the general idea:

"(The CT scan showed) that little tumor area on the liver bile duct. (This is the one that they found during my surgery, the one where he shaved off as much as he could. I think I have a few milimeters left in there.) That's not to say it's bigger or anything, just that it's there. They've seen it in the past. He thinks it could be inflamed from the surgery.

The lung spot I have had shows no real change. He can't tell if it's dead or alive. It's very small. PET needed here to show what's going on. 

Then, i have a few nodes next to my lung-- he calls them chest nodes. Those were there before, but he says they appear "inflamed". Which is to say, I suppose, maybe a little bigger. But he is wondering if they are inflamed from the surgery i recently had. I asked him if that was truly a possibility and he said it was." 
So. I have to get a PET scan to gain conclusive insight about all these spots. In theory, all could be well. Also, in theory, the cancer could be stable. Also, it could be growing ever-so-slightly. Good, not as good, or not good.

It looks like I'll probably have to start chemo again in Jan. If the spots are indeed growing, I'll need to switch to a different chemo, because this one (FOLFOX) is no longer working. (Aww! After 9 months of it + 15 more months of it? At this point, it's like an old friend.)

And how am I doing with all this? You know, if it were just ME I had to worry about, I'd be ok. I'd just roll up my sleeves, cuss at the sky and grit my teeth, ready to do more exhausting, all-consuming, sick-making, inhumane work. All of this, with Neil by my side, my unflaggingly devoted spouse. BUT THE KIDS... the kids. Add them into the mix and I can't help but feel this dagger in my soul. They are so sweet, innocent, lovely, needy, YOUNG, and wonderful. They need their mama desperately, and maddeningly, for all the things I've accomplished in my life, I cannot provide the simple yet vital guarantee that mama is always going to be here. It makes me feel desperate, extremely frustrated, terrified, and sad beyond words. 

But. When I get to that point, I calmly remind myself that I am not going to die within the next year at LEAST, and for now, that's going to have to be enough. Then I can exhale a bit, and resume the status quo, more or less.

Truth is, the scan might not be bad at all. Or not all bad, at least. At this point, I may as well just try to forget about forecasting the future because, oh yeah, I can't.

Instead, what I need to do is take that news and go have myself a Merry Christmas and a Happy New Year. 

Thursday, December 13, 2012


I only have a few minutes to write. I'm at my LAST CHEMO (til further notice... let's not get our collective hopes up... it's no fun getting hopes dashed, I've learned... but at the same time, it's not good to lose hope... what a fine line to ride). Anyway, soon they will be loading medicines into my veins that will render me silly and sleepy and I won't be able to complete a sentence anymore-- so here goes.

I have been feeling absolutely awesomely lately. I am not sure what is going on, but I have lots of energy, I'm feeling bright and festive, and I've been filling our days with fun. Decorating cookies. Parties. Visiting Santa. Doing crafts. My house is even clean. My laundry is up-to-date. My car is vaccummed, for heaven's sake. (vaccum is one of the words I never spell correctly. Vaccum? Vacuum? Look at it. What a weird word. What language gave us that word, I wonder.)

I have been seeing my accupuncturist regularly, and she helps me out. Not just with the needle/energy thing, but with mental strategies for navigating this shitfest. It's truly helpful and inspirational.

I also saw a specialized healer. I'm not sure what you call her. An intuitive energy healer? Half of you are thinking, "woo-woo, Shelly. Rainbows and auras." But, it was a very interesting experience, one I can't really explain right now. I owe the experience to my friend, Francesca, who learned about this woman and who got me in and also somehow financed the situation for me. This woman, Marie, apparently hosts a weekly radio show and has a huge wait list for personal appointments. HOWEVER, if there are cancellations in her schedule, she opens them up to people with the "greatest need". Stage 4 cancer really has a way of putting you at the top of everyone's list. Akin to ducking the velvet ropes at the hottest NYC nightclubs. Me and P-Diddy. Courvoisier and private tables. Back to the healer--I guess if I had to sum up a takeaway from all this, it's the valuable lesson that I have so many tools for healing right in my own body. I could stand to be a bit more intentional about my approach to this. (And that applies even to you, in your healthy state. Your mind is an incredibly powerful tool, and you probably aren't harnessing even a 1/4 of it. Few people really do.) Ok, that sounds preachy and new-agey, and you are wondering if I have gone off the deep end.

I'm just saying, I am excited. I feel sort of in control. That's a remarkable thing, when you have cancer. It's empowering when you don't feel like you're throwing a life buoy out to your oncologist, and you're bobbing along in the tide, head down, hoping and praying he'll navigate you to calmer waters. It's amazing when you realize, "Hey. I can kick. I can pull. I'm actually a pretty good swimmer myself. I am an important part of this healing process."

woooooh. The meds are hitting my brain, I need to sign off. Thanks for listening. See you on the other side.