Monday, January 24, 2011

Hey, lesion: I'll see you on the dark side of the moon

Oh MAN did I like that CyberKnife facility.

(Now there's a sentence I'm fairly sure I've never written before).

(P.S.- Sometimes I play this game with myself where I strive to create sentences that no one in the history of man has ever strung together before. Think about it. Half the things you say during the day have surely already been said by SOMEone at SOME point in the many days post-Rosetta Stone. "Turn left at the light." "I've GOT to get some lunch!" "I'm probably the most successful person in this entire food court." Etc.)

Getting back to it-- Today was my first consultation. The CK waiting room was very zen-like. Bamboo shoots, low flat upholstered chairs in an earthy palette, indirect lighting, premium coffees and teas. These days, I'm a connoisseur of such things so I appreciate the added touches. And if you gotta get tumors blasted, you may as well feel peaceful waiting for it to happen.

I LOVED MY DOCTOR FROM THE MOMENT I LAID EYES ON HER. She quickly whisked me out of the little examination room, and into an even smaller room where the special computer would give us access to my scans. We combed through them together, and she explained everything to me. She showed me just how tiny this "liver lesion" is (17mm). She then spent at least 30 minutes going over every conceivable question I might have about my cancer, the procedure, the technology, you name it. She even shared with me that she would be undergoing CK treatment soon herself. She recently learned she has breast cancer. She helped work on the plans for her own 'Knifing.

So now:

Step #1: Get insurance to cover this procedure, which is enormously expensive. Hello, red tape! May take up to one week.

Step #2: Get an MRI and CT scan to show the precise current dimensions of the "lesion". Then, they implant 3 small gold-seed markers in my liver to give the 'Knife some coordinates from which to work. (This is probably as good a time as any to let you all know that if for some reason I should ever die, harvest my liver STAT, 'cause we all know the price of gold is only going up.)

Step #3: Develop my personal treatment plan, which will be created by a PHYSICIST. Takes 2-5 days.

Step #4: Let the 'Knifing begin. Should probably take three consecutive days. One hour a session. Should have no side effects. Will blast the spot to kingdom come, leaving only a "cold spot" in my liver which I envision to be like the dark side of the moon. (If this blog featured artwork, I'd attach Pink Floyd's "Dark Side of the Moon" album cover here. That prism effect even reminds me of CyberKnife beams! Those guys really WERE ahead of their time, weren't they.)

My doctor also suggested I might go see one of their partner naturopaths, who work in concert with the oncologists/radiologists, so all my treatments synch up and work complementarily. I plan to do this right away. Love me some herbs.

The ONLY off-putting moment of the entire morning was when the admitting nurse said, after removing my blood pressure cuff, "Now I have to ask you a question. I ask this of everyone. Do you have a living will?" I snorted and replied, "JEE-ZUS, do I look THAT BAD?" She then provided me with a thick stack of white papers titled, "Your Life, Your Decisions". There's even a comforting black and white photograph of an elm tree on the front.

Bottom line: I expect to be done with all this by the end of Feb, and it should really be no sweat. Placing the gold seeds in my liver might smart a bit, but I bet it's child's play compared with what I've already been through. (Ten bucks says that's another sentence I'm probably the first ever to utter.)

Wednesday, January 12, 2011

CyberKnife me, please

Well, I've got my answer. The course of treatment I'll get for this "tiny liver lesion" is a form of radiation called the CYBERKNIFE.

From the CyberKnife website:
"The CyberKnife® Robotic Radiosurgery System is a non-invasive alternative to surgery for the treatment of both cancerous and non-cancerous tumors anywhere in the body, including the prostate, lung, brain, spine, liver, pancreas and kidney. The treatment – which delivers beams of high dose radiation to tumors with extreme accuracy – offers new hope to patients worldwide.

Though its name may conjure images of scalpels and surgery, the CyberKnife treatment involves no cutting. In fact, the CyberKnife System is the world’s first and only robotic radiosurgery system designed to treat tumors throughout the body non-invasively. It provides a pain-free, non-surgical option for patients who have inoperable or surgically complex tumors, or who may be looking for an alternative to surgery."

Well, sign me up.

This technology, which I have spent approximately 3 minutes researching, sounds like it's the hot new thing in radiation. I think it started being used in 2009. Instead of a 6-week cycle of treatment, they will zap the f-er in anywhere from 1 to 5 sessions. It has no side effects. It is insanely expensive (and I thought a tiny dose of Avastin costing $10,000 a pop was a lot!), and until very recently, was only available in a few places in the USA. Now there are about 150 of them worldwide, which is still not a lot, but I'm lucky to live down the street from one such place.

Here's where I'll be going:

But this video makes this thing sound really cool. Look how amazingly they have merged technology into this process:

GEEZO, this post sounds like an ad for Accuray (the maker of the CyberKnife).

My first appointment is Monday, Jan 24th. Not sure when the actual 'Knifing will begin. But whenever it starts, you can be sure to read all about it here. Vicarious Cyberknifing: the next best thing to being there.

Monday, January 10, 2011

What a load of crap

This morning I had a detailed conversation about feces with a complete stranger.

(No, not my kids. that would not be out of the ordinary or worth mentioning here.)

I met with an nutritionist, to talk about healthy ways of eating when you have a colon that's 10 inches shorter than it used to be. I used to eat so healthily! Whole grains! Fresh, raw juices! Legumes! Fresh fruits and veggies! Nuts! Booze! Cadbury Mini-Eggs and Skittles!

But that stuff all wreaks havoc on a short colon, it turns out. I've actually been advised (during chemo, especially, but also after) to eat junk that breaks down really easily in your body, like white bread. And to cook my veggies to oblivion. To cut my veggie portions waaay back, etc.

It's like the opposite of what you long-colon-folks (LCFs) are supposed to do. You lucky people. You and your long, long colons. Go ahead and eat an entire cup of raw broccoli! See if I care.

Now if you'll excuse me, I've got to go boil some peas for 45 minutes.

Sunday, January 9, 2011

grey day

in case you ever wonder if i have a screw loose (hello Polly Positive!), i'll let you know that I am feeling a little glum about things today. how glum? glum enough not to care if i don't capitalize my sentences. i know i'll snap out of it, and that it's normal to feel scared and worried. it is just going to take me a few days to get my head back on straight. i recognize that this is some pretty heavy shit, and i know i'm doing great overall... but still. the mind does tend to wander.

feel free to bombard me with positive case studies and thoughts.

i'm glad my mom is here visiting, doing all my chores and just being a mom. and i'm glad it's the weekend, and neil is home to shake me by the shoulders and tell me I am going to live forever.

Saturday, January 8, 2011

"Second-best possible results"

Ok, the PET scan results are in.

I am "clean as a whistle" (celebrate!) **EXCEPT FOR** "that one spot on your liver" (oh shit!), which has continued to grow a bit from last time, indicating that it is in fact, tumor growth.

So yes, the cancer is again present in my liver.

****But here's why we can feel good about things.*****
1) This is not new tumor, it's the same old one that was there before. We thought it was knocked out, but a tiny indetectable bit in fact remained. So now, we will treat it. My doctor tells he can "definitely" get it. It's tiny. We can nuke it. He's not sure yet if I'll do radiation or "micro-waves" (what?), or chemo again (not as likely, as it's just one spot) or surgery. He'll know when he gets back into the office on Monday and can look at my films. My vote is for radiation, not knowing about micro-waves, not particularly liking chemo, and not really feeling up for more surgery. (i have enough narcotics, no need for more.)
2) What REALLY would have sucked is if new tumor growth had occurred, in new places, indicating that the cancer was still running amok in my body.
3) This is the very spot he has had his eye on from the start. He thought if it was going to come back, it'd be here. I feel good that this growth was at least predictable for him, and treatable.
4) I asked him if he felt freaked out for me, if this was something terrible. He told me that this was in fact the "second-best possible results" (the first-best being, of course, no cancer). He said he would have been worried if I had cancer growths all over my body. He again told me that aside from this spot, I was "clean as a whistle", and that made him feel very happy.

So, I'm feeling ok about this. I know I can win this round. I have no doubts. I'll find out my course of treatment early next week, and I'll do it. Probably ASAP.

We are merely finishing up the job we started before. We thought we were finished, but we weren't.

Tick, tock. Tick, tock.

Just FYI, I had my latest PET scan yesterday. I am awaiting the results. They will show if that spot on my liver from last time was just a fluke, or if it's something to concern us.

I'm not going to lie. Waiting the last two months for a definitive answer has started to make me feel a little crazy. It's hard to process feelings and move on when you don't even know your status. After all, there's a lot at stake here. It's not like waiting to see if your strep test comes back positive-- this is cancer, for heaven's sake. There are times when I feel invincible, ready to take on the world and kick some cancer ass, should it be necessary. Other times, usually when I'm alone on the couch at night, or in the shower, terror sets in, and I feel like my abdomen suddenly floods with ice water and I'm sinking fast in a dark ocean. (Sounds dramatic, but that's the actual image that I see sometimes. It's so bleak and dark and helpless and hopeless.)

Added to the stress of waiting was the fact that it was the holiday season, when emotions run high anyway. Seeing the kids react with glee, reuniting with beloved family members, participating in cherished traditions-- it all felt a bit more real this year, because I realized that for me, it could all be fleeting.

I have had plenty of time to mull over my paths ahead. If it's cancer, I've already imagined all the possibilities: surgery? radiation? chemo? (God, please no. Not that again.) If I'm all clear, bliss. Glee. Freedom. Life! It's hard to steel yourself for battle AND simultaneously keep hope alive in your heart that you may soon be celebrating and exhaling with relief.

But I'll know soon. And of course, I'll let you know here.

By the way, I forgot to say--Happy New Year, everyone!