Tuesday, September 13, 2016

The Radiation Queen

It's a queen. ~ Ripley, Aliens 3 (1992)
At least, that's what I thought when first confronted with the massive radiation machine on my first day of treatment.  In my mind, I saw this:

The Queen, ready to spawn thousands of aliens in Alien Resurrection (1997)

In reality, I encounter this brightly lit machine each weekday of my five weeks of radiation treatment:

The Radiation Machine aka The Queen
In quick recap of my 2016, I was diagnosed with a "bit" of triple negative breast cancer (TNBC) in January 2016 and ended that month with a lumpectomy/breast conserving surgery wherein my surgeon, the wonderful Dr. App, removed my tumors, moved around my breast tissue and relocated my nipple to form a slightly smaller yet relatively unmolested left breast.

I call her Frankenboob.
My right remains jealous.

I endured AC/T chemotherapy from March 3, 2016 through July 19, 2016, and am still recovering from the side effects.  My chemo port was removed August 5, 2016, so that I'm no longer a member of the Borg. And the following week, I met the "Queen" above to begin my daily radiation treatments.

I have one each day, Monday through Friday.  Do you see that table with what looks like molding along the top?  Here, let me show you a closer picture:

Radiation Table

Under the sheet is a "bean bag" that has been molded to my body.  During my initial appointment - my simulation appointment - the technicians placed the large bag underneath me and, once they had me in the desired therapy position (arms above my head), they sucked all of the air out of the bag in order to create a "mold" for my body to be used at each treatment.  It helps to ensure that I'm in the same position each time they aim that little beam.  As do my four new tattoos.

What? Tattoos? That's right.  I told the tech with the needle that she was giving me my gateway tattoos.  I'm sure this will lead down a path of elaborate sci-fi references and jaunty looking owls covering my pale flesh. 

That desk lamp looking contraption above me is actually a breathing tube.   

Right.  What?  A breathing tube?  Don't I just close my eyes and relax while any possible remaining cancer cells are zapped out of me?

Nope.  See?  I put my mouth around that large blue piece. 

Go ahead, try to convince me that a man didn't design that thing.

In the end, I look kinda like this:

Actually, I look exactly like this since this was taken by one of my technicians.  See?

Yep, that's me looking uber comfortable, right? Not at all like I'm being used to incubate an alien.  Actually, put me in a vat of water and I'm a bit more Luke Skywalker from Empire Strikes Back recovering from nearly becoming a snow monster's popsicle.  

Anyway, this is a fully interactive radiation.  Because my tumors (the main and its mini-me) were located in my left breast, my radiology oncologist opted to have me use the breath-hold technique when receiving radiation treatments. At that first appointment, they had me use the breathing tube to inhale as much as possible and measured my lung capacity.  Then they had me do it again.  And again.  After three large breaths, they used these measurements to find a range representing 75% of my lung capacity.  During treatment, I inhale until I reach that 75% range then hold my breath as the actual treatment takes place.  This creates extra space between the tissue being radiated and important parts like, oh, my heart.

But how can I know when I've reached that 75% range?

Well, as you can see above, along with the breath tube and tiny clamps closing off my nostrils, I also wear goggles during treatment.  Goggles that show me the computer screen being used by my techs.  And this is where it becomes like a video game.  A ridiculously easy video game but, really, those are the only kind I enjoy.  During treatment, when I look through those goggles, I see a screen like this:

Radiation Mock PC Screen - Breath Hold
The red line moves across the screen from left to right as the tube monitors my breathing.  First, I aim for my exhale to end within the gray bar across the bottom.  Once I've done that three times in a row, the tech is able to press the big green button, which causes the green bar to appear on the screen and I inhale until the line is within that green bar; then I hold my breath.  I hold my breath until the big red button lights up.  I usually do this three times during a treatment.  The first two times tend to be about 20 seconds each with the third coming in at about 10 seconds. 
I believe the longest I've held my breath doing this was during the simulation appointment at 34 or 35 seconds.

Now, before and between each of those breath holds, the radiation machine moves around me as my table also moves, putting the machine and me in specific positions for the radiation.  That circular part of the machine over my face in the picture?  That typically begins along my right side for the first zap then moves to my left side, down low, for the following two.  Three breath holds and I'm done with a treatment.

One treatment each day for 25 days.

As of today, I've finished 23 treatments.  My last ... LAST ... radiation treatment will be this Thursday, September 15, 2016. 

My skin held up really well until about treatment 21.  Sunday night, I realized that a large blister had formed and broken in the treatment area just under my left arm.  Fun times.  As of last night, other parts of the treatment area have started to peel like I had a really stupid time on spring break in Florida.  I cannot wait until Thursday.

My friends these days are called Aloe Vera (the clear kind) and Aquaphor.  I apply them generously and often.  Enemies include heat and ... well ... anything touching the area.  Since last Thursday, the worst hoodlum is called "bra." 

Thursday really cannot come soon enough.  Someone else can meet the Radiation Queen and play this video game of zapping cells.

I'm ready for Ripley 2.0 to head on down to earth.

Sunday, September 4, 2016

Brave and Inspiring

Not today.

Just. Not today.

You will hear the words "brave" and "inspiring" a lot during your treatment. You likely said them yourself when it was a friend or other loved one going through the same fight.

"You're so brave."

      "You inspire me."

                   "You are amazing."

  "You're so strong."

It's all a part of that support I've mentioned before. That immense support that can sometimes seem overwhelming and so unexpected.

You focus on recovering from surgery. You do your best to take care of yourself during chemotherapy. You learn all that you can about radiation. Each day, you take that next step forward.

And, if you're like me, you often don't feel all that strong.

You're more amazed at the time that's gone by than at yourself.

Inspiration? Bah. Brave?

Well, I sometimes feel brave to be seen in public with my cancer-altered body. Does that count?

If you're like me, there will be days when you just can't.
You can't be the brave, strong, amazing warrior that your world expects. You feel incapable of positivity. At this point - my point - you've finished chemotherapy but chemotherapy hasn't finished you.

                                   It just can't quit you.

Many side effects have blissfully gone away and your body is sprouting hair once again and often in places you really wish it wouldn't. Nose bleeds have ended and coughing is lessened. But ... fatigue continues and even worsens. Your toenails have yet to fall off and, what's this? Why are they itching?
What seems a minor inconvenience quickly invades your life.  Itch.

                              Itch! Itch! Itchity Itch!

Still managing to ignore it? Well, let's add blisters. Many, watery, itching, burning blisters.
Jesus - Are these the elephant man's toes?

What. Is. Happening!?

Ask your doctor.  Perhaps, like me, you'll find out that it is "just part of the process." 

On that day, my friend, you'll not feel brave, or amazing, or inspiring. You'll feel like hitting something. Hard. Starting with the person who said, "just part of the process."

You'll feel like crying a lot. Except that, well, crying comes with a runny, stuffy nose and you'd rather not.

You might want to talk to someone. To vent. But ... this isn't brave. Or inspiring. You don't want to burden your loved ones when there's nothing they can do and little they can really understand. 
I remember this. I remember seeing this is my friend Robin's eyes but not knowing what it was exactly.  I'd ask how she's doing and she'd smile and say fine. I knew it wasn't fine. But I also didn't know what to say or what I could do for her. Looking back, I wish I would have simply said, "I wish there was something I could do for you."  But I digress.

Hopefully, like me, you've found a support group - whether it is live or online - it's important to have a group of people to whom you can vent. Share worries. Share experiences.  And sometimes they are your best lifeline. A group of people who are going through the same or similar treatment are invaluable. They know what you're going through. If they're not able to give suggestions for coping, they understand completely and sometimes that is the most needed thing in your life. True understanding. Acceptance of your bad days.

The days you say ... not today. There's no bravery, no inspiration.
Just. Not today.

I'd love to end this by saying that tomorrow is another day. That all will be well. That the sun will come out or some shit like that. But I'm waiting for my blistery toes to start driving me insane once again. I'm realizing that the holiday weekend is nearly over and I've neither visited friends or family nor gotten loads of work done. 

I've done ... really nothing.  Actually, wait, I've managed not to draw blood scratching. 

Right now, that's pretty fucking impressive. 

Screw brave and inspiring.