Radiation #2, #3

Tuesday was my first treatment, and it was very, very freaky. I guess I was expecting to have an office visit with my radiation Onc, who would explain to me exactly what would happen, exactly where they were directing radiation, how much I would be receiving total, and how many treatments she had decided I would need to have. Nope.

I walked in and was immediately ushered back (by one of my incredibly cool and nice techs, Amy) and was instructed to take my shirt and bra off and get in a gown. (No biggie; at this point, the hospital gown is the second-most worn piece of clothing in my wardrobe, other than my black hoodie.) After that, I was brought to the room containing the huge radiation contraption and was laid down on the platform sticking out of it. Then came "the mask." The one they molded last week. Let me just say it's a bit snugger when cool. They bolted me down (that would be the freaky part- being immobilized, unable to open my eyes or speak clearly, just laying there, everything out of my control) and they sent me in for a CT scan to line up my position and get everything perfect. After that scan, the platform went back out of the machine, and the techs made minor adjustments, as per the doc's orders. After that (a looooong time after that, still bolted down) the platform went in again and the actual therapy began. The machine is very noisy, and when the treatment starts the only way you can tell it's begun at all is because you hear a clicking sound moving around you repeatedly for about five minutes. No pain. Just a quite a bit of discomfort due to the mask. Really a breeze, compared to chemo.

I think that I must have been under that mask for upwards of 45 minutes on Tuesday. I'm not sure how I kept from freaking out. I did biofeedback, but the mask is so tight that it's very hard to breathe deeply. In the end, I just sang the Grateful Dead song "Althea" over and over in my head. It's a song about a strong, wise, kind woman. I just kept trying to be that. Strong.

Yesterday was much easier. It was probably only 15 minutes total, and it helped that I kind of knew the routine this time. I found that the Pink Floyd song "Fearless" was playing in my head over and over. It was perfect. I also found myself visualizing that I wasn't on the hard platform of the Radiation machine, but that I was laying in the little pool in the Gage Park rose gardens, my body supported by hundreds of purple lotuses. I felt much calmer.

Also, after I asked, Jon (the other kindly radiation tech) showed me exactly where they were radiating. For some reason, that makes me feel a bit better. Not that I have any more control over what's happening to me, but I guess I feel like it gives me more control over myself. I think that's the trick to life: If you can't control what's happening, at least you can control how you react to it. Ah, the wisdom this disease has brought me.

So here I am, a few hours away from treatment #3, and so far I've only had some dry coughing and some shortness of breath. We'll see how the side effects progress.

I'll be singing this again today:

You say the hill's too steep to climb, climbing
You say you'd like to see me try, climbing
You pick the place and I'll choose the time
And I'll climb the hill in my own way
Just wait a while for the right day
And as I rise above the tree-line and the clouds
I look down hearing the sound
Of the things you've said today

Fearlessly the idiot faced the crowd, smiling
Merciless the magistrate turns round, frowning
And who's the fool who wears the crown
No doubt in your own way
And every day is the right day
And as you rise above the fear-lines in his brow
You look down hear the sound of the faces in the crowd...

Radiation Countdown: After this treatment, 14 more to go.

Radiation #1

So here we are. It's finally Tuesday. My first day of radiation.

I'm nervous. I'm not quite sure what to expect. Other patients whose experiences I've read about on the forum call it a "non-event" for the most part. Painless, strange and uncomfortable (being under the bolted down mask and all.) And apparently every treatemnt is very short, as in less than ten minutes. (after this initial one, what with getting details worked out and getting the position perfect, which may take a while.) So I think this may be a bit easier than a two-hour infusion. Have I mentioned lately how freaking happy I am that chemotherapy is over with? I keep thinking I have treatment this Friday, but then I realize that it's done and over with. I keep thinking I'm going to be sick for a week and planning for it like I have the last 8 months, but then I realize I don't have to. *insert huge sigh of relief here*

Well, the sun is shining today, and I think that's a good sign.

"Every little thing's gonna be alright."

You've come a long way, baby

Wow. So yesterday was a whirlwind of information and preparation. My mother and I had a consult with Dr. Koozer, my Radiation Oncologist, and she finally, bluntly, put my odds into terms even an English Major with chemobrain could grasp. Stage IVb, bulky, unfavorable. I was kind of far gone back in August. (and apparently it grew quickly, because my doc uncovered a chest x-ray I got in 2008, and it was clear. Clean. NO CANCER. Whoa.) Anyhoo, chance of relapse is very very real for my case, so Dr. Koozer (and the board of doctors that met yesterday) strongly recommend radiation to my neck and upper chest. (The original and bulkiest sites of disease.)

It really didn't take long after staring at another series of pictures of the huge tumors in my neck and chest and all of the little nodes in my lungs to come to a decision. I've come this far, and I've had an excellent reaction to treatment. So I'm undergoing radiation starting Tuesday, so I can cheat death just a little longer. The doc reminded me that this is no guarantee, but I'm just happy to have made it this far.

So they fitted me with a molded neck brace pillow thingy, (to help keep my chin up and head in position) and then (and this was so cool) they warmed up this clear mesh plastic in warm water and pushed it over my face, head and chest, bolting it down. It slowly cooled and hardened and made a perfect mold of my head position so I can be held in the exact same angle every treatment. As frightening as the prospect is of being immobilized and bolted down to a table as your body is being burned from the inside out, the technology is amazing.

Oh, and I got tiny little dots tattooed on my sides to help them position me exactly the same way every time. They're the size of freckles. Does that mean I'm up to 8 tattoos now? I'm not sure these are big enough to count.

So, yeah. Tuesday. Let's get this party started.

Adventures in PET Scanland

As promised, here are some pictures from my PET scan on Friday.

Picture#1: As you can see, I was thrilled that Dary, my Murse (man-nurse) found a vein. Even if it was in my hand.

Picture #2: The notorious lead-covered syringe containing radioactive sugar goo. (On the left, silly. The one on the right is a saline flush, methinks.) Soooo creepy.

And yes, Dary then proceeded to stick that lead-sheathed syringe into the IV and shoot me up with aforementioned radioactive sucrose. SOOOOOOO creepy.

Picture #3: Now this is cool. This is what you see when you lay down to go into the scanny machine. It's absolutely beautiful. I found myself singing The Doors in my head as I gazed up at it.

"Don't let me die in an automobile, I wanna lie in an open field..."

Picture #4: The PET scan machine. Pretty neat looking, really. I went in head first into that hole there, and everything felt warm. I heard whirring and things spinning around me. The scan felt like it lasted for ten minutes or so, but my Murse told me it was more like 25 minutes. Not unpleasant, except for having to hold the arms-over-the-head position.

So, yeah. Everything went smoothly on Friday. Monday is the big day- I have an office visit with the Onc to go over the results of the scan. Either the cancer is gone or it's still hanging around.

I'm feeling more positive each day.

5/6/10

The nausea continues. As does the fatigue. Although the fatigue isn't a "sleepy" sort, it's more along the lines of "make your body weak but your mind completely awake so you can lay on the couch and contemplate you nausea." (...and now please welcome to the stage: sore mouth and perpetually foggy mind!)

I think maybe I'm just especially impatient this time. I try to keep in mind that I can't be too hard on myself if It's not a perfectly uphill slope from here. I know that I'll have more and more great days, but I know that I'll also have days where I still don't have the strength (or mental clarity) to do what I used to do. I guess this is as good a time as any to learn how to be easy on myself once and a while.

I want to be on a bike ride in the sun. Or a hike. Anything.

Also, I'm definitely feeling some "scanxiety" over my PET scan tomorrow. I feel like a burden on anyone I might ask to go with me, so I think I'm going alone. I know it's silly, and the process is painless and has less (noticeable) side effects than a CT scan, but there's something about getting a radioactive substance injected intravenously that really freaks me out. Not to mention, it might take a miracle (or several dozen tries and a few blow-outs) for anyone to place the IV catheter. I guess there's a little girl inside of me that just wants someone there to hold her hand.

Anyhoo, here's an outline of the process, as I remember it: The nice people down at the CT/PET office have me fill out various sorts of paperwork ("Are you pregnant? Is there any chance you could be pregnant? At all? Are you pregnant and maybe you just forgot? Etc, etc.) Then they explain the procedure and place an IV (easier said than done.) Next they break out a syringe that looks like it's out of a sci-fi movie (complete with a crazy looking lead tube covering the body of the syringe- pictures to follow, hopefully) and inject the radioactive sugar substance to my arm via IV. Next is the boring part. They have me lay back and move as little as possible in a recliner for an hour to let the sugar metabolize. After the hour is up, they lay me down in the scan thingy (gown on, pants at the ankles) and the scan begins. It takes about 15 minutes or so of whirring and spinning things, and then it's done. (See? It's not that big a deal- hence my hesitance in dragging someone along to sit for two hours.)

On the Monday following, I have an appointment with the Onc to go over results. Anything lighting up on the scan= bad news (that means there are quite a few active cancerous cells remaining) Nothing lighting up on the scan= NED (no evidence of disease.) Then we talk about radiation. And remission!

All I want is a clean scan. Please please please.

fin.

Ugh... it's hit me hard and quick today. Very nauseated and crappy feeling. But hopefully, this is the last time I will ever have to feel this way. I am officially DONE with chemo. Thank God/Goddess/Gaia/Buddha/Bill Hicks!

Next up is the PET scan. The kind folks at the hospital tried to get me one at the last minute today, but my veins are tiny and rolly-polly (and now scarred by chemo) so by the time they had stabbed at both arms unsuccessfully, the radioactive juice was no longer active. They were all super sweet, though. They really tried. I always feel so bad for any nurse trying to get a 20g IV catheter into my little, crappy veins. They feel so bad for hurting me, and I feel bad for them feeling bad. They always do their best, and I tell them so. It's not their fault I have dainty little lady veins.

Anyhoo, I'm trying not to think too much about the PET. I start to get nervous about the outcome. I start to worry about getting a "dirty" scan. I know I shouldn't let my mind wander there. It's a waste of time and energy. So I try to focus on the positive, thinking about how far I've come and the tremendous progress I've shown in all of my scans and x-rays so far. I will get a clean scan.

After that, I will probably schedule my radiation consult, and then, start radiation. That all depends on next Wednesday's outcome, when all of the Docs review my case. I still shudder at the thought of radiation. But if it keeps me from ever being hooked up to that chemo pump again, I say radiate the crap out of me.

I'm ready to move on. I'm ready to live again, appreciate life more, help people and be happier than I've ever been.

One day at a time, right?

The next step(s)...

Ok, breakdown has been had, rebuilding is in progress. I'm trying not to think too much.

So here are the next few steps:

On Monday, I will receive my LAST chemotherapy treatment. WHOO HOO!

On Friday, I will receive a PET scan, which will show if I have any active cancer left. As you may imagine, if nothing glows on the scan, I'm considered in remission (pretty much.) If there is any activity... well... Plan B. Let's just not think about Plan B.

The following Monday (May 10th, for those following along) I will have bloodwork and an office visit with the doc to review the scan.

On May 12th, a board of doctors will review my case to see if radiation is necessary. From what my doctor says, they will strongly recommend rads.

After that, I will schedule a consult with the Radiation Oncologist. And then, I assume that radiation will begin. And don't even get me started on how much that idea freaks me out.

Honestly, I'm just very scared right now. I know that everything will be the way it's supposed to be and that I can't look back wondering "what if." I have to move forward, do what I have to do, and just keep breathing.

One day at a time. I know I can beat this.