Radiation - 3 (of 30) - The Blue Machine

3 down, 27 to go.  I took some photos of my linear accelerator, aka the Blue Machine: TrueBeam by Varian.  You can consult the googles to learn more.  Or you can visit BWH - they'll let anyone back there to check it out if they want (just not when it's actually running!).  The front part spins 360 degrees so they can zap you from all sides.  I'm facedown so I don't get to see it in action, but it makes fun whirring and beeping noises, and I can tell when it's done by the movement of the table.  The table is raised high for treatment, right under the beaming part.  I'm getting better at positioning and staying still.  Good for me.

Radiation - 1 (of 30)

Don't worry, I won't post every day - no excruciating minutae for radiation treatments.  Today was the first one.  It was scheduled super-early as that was the only time available (7:20am).  And just like my first chemo, they were running way, way behind.  I'm on the "blue machine" and the blue machine was having issues.  I met with my radiation oncologist while waiting for those issues to be resolved, so at least that was out of the way.  It wasn't until about 8:15 that I got into the room.  Apparently I'm really not good at relaxing... they had to come in about three times before we got going to re-position me and tell me to really go limp and heavy, and press my pelvis into the table - which I really don't get, because if I'm trying to actively press some part of my body into something, I'm not relaxed, limp and heavy like they want.  It was confusing.

But it happened.  I have officially been irradiated.  We'll see what comes of this.  Hoping at least the first couple weeks are smooth and side-affect free, as they have assured me they will most likely be.

On the up side, the media relations folks for the Jimmy Fund FitFest I signed up for want to talk with me.  I was singled out from my commentary on my fund-raising page, and they are supposed to do a blog post soon, and then there might be some other media coverage as promotions for the event continue.  It's on 5/14 - more to come, but if you haven't already, check out my page and if you are so moved, make a donation!  I'm the top non-team fundraiser - keep me there!

http://www.jimmyfundfitfest.org/2016/erinemthomas

Radiation Verification - Start the Insanity

I had a verification appointment today.  A lot like the mapping appointment - same weird holey table, face-down for 20 minutes while the machine beeps and whirs.  They took additional x-rays to confirm the alignment of my tattoos with the mapping they created.  Nifty laser-guided stuff.  But I wasn't a good patient... apparently I was moving ever so slightly toward the end.  I was reminded not to move anything.  Just relax and hang out, perfectly still.  They put Steely Dan on Pandora for me.  Maybe they should tune in to Enya or ocean waves or something instead, so I don't inadvertently tap my toes.

I also finally made all the appointments for the next 30 treatments.  Oh yes, forgot to mention my radiation oncologist upped the days from the usual 28 to 30 so they can focus on "problem areas" as identified during my second surgery.  The only time they had for the first two days is 7:20 in the ante meridiem.  In the ANTE MERIDIEM.  Boo hiss.  Otherwise, managed to make most of the rest for late in the day so I can just go home after.  Still, it's a burden, especially on my husband - daycare pickup is all him for the next six weeks.

So tomorrow I start my oral chemo - 3 in the morning, 2 at night - and also a larger than usual dose of vitamin D for good measure.  I'll get up at some hideous hour to be irradiated.  And then we wait to see what side affects hit, and hope the late-breaking neuropathy goes away, and start the countdown.  I am not looking forward to it.  Something about passing the damn emergency room on my way in really bothers me, every time.

Alas.  Onward and upward.

Radiation Mapping

Today was not a good day.  Really, I just don't want to do this anymore.  I was really enjoying being DONE with something.  I was stressed all day about starting the radiation process.  This treatment will be at Brigham & Women's, and walking to the building and past the emergency entrance triggered a flood of memories from August, and the awfulness of the pain that brought me there, that resulted in days of fevers and then the giant second surgery.  That didn't help my state of mind.

Treatment is in the basement where they keep the fun toys.  I'll be irradiated by what is essentially a linear accelerator.  They prefer to have you lie on your stomach when the pelvis and lower abdomen are involved.  The table has a "face cushion" like you see on massage tables.  (Ah, if only this were a massage....). It also has a big hole in the middle, so when you lie down, as much of the small bowel as possible kind of falls into the hole and out of the way of the beams.  Having an ostomy makes this a little harder but not impossible.  Luckily mine is pretty small.

They got me all lined up, face down in this odd position, and did the scan for the mapping.  I had to drink a cup full of a barium solution first; not tasty.  Then I lay there a while so they could check the positioning and give me three permanent, freckle-sized tattoos with a small needle - one on each hip and a third near the base of my spine.  So yeah, now when I'm asked if I have any tattoos, I can say yes.

And that was it, for now.  I picked up my chemo pills -- all 140 of them -- and go back next Tuesday for a dry run.  They give you a special card to check in (because you are there EVERY WEEKDAY for six weeks or so) and go through all the motions to validate the mapping, alignment, etc., but don't actually zap you.  That starts next Wednesday...

To top it all off, the day started with me ordering a breakfast sandwich with my coffee and then forgetting to wait for it.  I didn't even realize it til I was already at my desk.  Thanks chemo brain.  And it ended with me running into a sign pole with my face when picking up my son from daycare.  I was smiling at the kids in the playground as I walked up and bam.  Now I have a welt on my cheekbone the size of a walnut.

But now we are going for Chinese food, and hopefully some good dumplings will make it all better.  I still don't want to do this anymore - but I'll save the rest of my tears for another day.

I'm not at chemo

It's an every other Monday and I'm not at chemo.  Score.

Party Girl

I had a late night out last Wednesday for the first time in months.  An after-work hang with some colleagues and vendor friends.  I had more alcohol than I've had since before my diagnosis.  I haven't dared drink more than a smidgen of wine - only on one day, only during off weeks - since early last summer.  I forgot what it felt like to get kinda drunk.  And I survived!  I felt a little worse for wear the next day but nothing a whole lot of water wouldn't take care of (which it did).  Plus it was awesome fun. 

We're celebrating the end of chemo in every way possible until radiation starts (in 10 days).  We had an awesome dinner out last night, and have another one planned tonight, and at least one more next week already on the calendar.  I have a few days in between projects at work so have time to eat lunch away from my desk.  It's a nice weekend so I can spend time outside cleaning up the garden without worrying about my hands getting all tingly from the cold.  I'll probably take the kids to a movie tomorrow.  Oh, and I am SINGING for the first time in a million years, for a fundraising event for a chamber vocal group in which one of my close friends sings; we have a rehearsal tomorrow.  I haven't been to a rehearsal for anything in at least 5 years.

And finally: a few minutes ago I started to put my steroid doses on the calendar so I wouldn't forget to take them - and then remembered I don't have to do that anymore!  Bonus.

In Between Days

Today I cleaned out the tote bag I brought to every chemo.  It felt good to know I wouldn't need it anymore.  At the same time, in doing so, I feel like I have no idea what I'm supposed to do next.  I've spent five months working at home one week, in the office another; half-expecting an allergic reaction with every infusion; not eating ice cream every other week to avoid the cold sensitivity frog in my throat; not planning on being able to do much of anything from late on day two through day four; enjoying the week "off" as much as I could until the anxiety of the next infusion set in.  It wasn't anything I wanted to do but at least it was some kind of schedule; a known, relatively predictable structure I adapted to and could navigate.

Now it's just unknown.  I've heard lots of stories from nurses, doctors, and friends about what I can expect from radiation.  I'm expecting it will be physically easier and logistically horrible.  I wish I could just schedule all the appointments - the known scheduling unknown really eats at me.  I'm nothing if not efficient.  Not scratching that itch is making me anxious.

I won't have another scan until after radiation.  For all intents and purposes I have been cancer-free since the second surgery.  Of course there is no way to know if this cancer will ever come back, but somehow, the idea of not fighting it anymore once radiation is over also makes me anxious.  I guess the answer to that is to keep fighting somehow - eat right, exercise, love my family, do my best at everything, and appreciate each day I wake up.  Live in the moment.  There are no guarantees.

Course 12 - I'M FREE

The final pump disconnect is complete.  I am free.  It's day 3 so I still feel like crap but at least no more pumps are in my future!!!