Monday, November 29, 2010

Introducing... Felafel!

Felafel the Aloe Plant
I know it's been a while since I've posted anything on here, so let me rewind and fill you in on the goings-on of the past 10 days:  We visited with family and it was lovely.  I reunited with a childhood friend.  My first nephew was born a week ago!  I dyed my "hair" this morning with some Henna-based dye from WF and Dan says I look like Peter Pan.  Aside from a batch of ugly green boogies (that required a z-pack) before Thanksgiving, I've been feeling okay.  My energy still comes and goes, but I am able to do market shopping, errands, knit, laundry, etc.  This morning I even took the dog for a walk!  We got to spend some time away from the (still unfinished) kitchen and had a minute to relax before radiation began today. 

Somewhere inbetween the germs and the turkey (not all in the same place, luckily), our darling son decided that the nap is no more.  After spending quite a few days in a row crying for almost an hour upon waking, we decided that if one requires a "recovery" period from a nap, the nap simply isn't meant to be.  The past few days we have been auditioning the early bedtime/late sleep-in combo.  It went well last night, but tonight not so much.  We should have started the bedtime routine earlier than 7 (which is, apparently, when the tears come rolling in) to avoid name calling (from his time out spot, "You're stinky!"), limb flailing and screeching.  In the end, J-Mac is fast asleep wearing a diaper (I pat myself on the back for getting that on), pajama bottoms and his orange guitar shirt that he refused to remove.

Earlier this afternoon, I came face to face with the IMRT (Intensity-Modulated Radiation Therapy) machine at AMH.  Since I'll be visiting the hospital daily for the next 4 weeks, the nurses took me through the daily procedure which begins by checking in with a barcode ID (kind of like I'm being checked out in the grocery store).  I then continue through the double doors (for patients and staff only) where I select my 2 lovely blue gowns from the clean gown cabinet.  I take these fine specimens to the locker room where I change into them both (one opens in the back, one opens in the front) and lock up my belongings, taking with me the key on a little gummy bracelet that reminds me of 5th grade accessories.

After I'm changed (only from the waist up), I mosey on over to the ladies' waiting room, where I can read a magazine (or, as the case may be, compare notes/get asked personal questions by whomever is also waiting there for treatment) until I hear my name get called over the PA system to come back to the zapper room.  I'm on the green machine (each one is labeled a different color, and each patient is assigned to a specific machine), so I walk back to the door with the big green dot taped overhead, enter, and hang my first gown on the hook.

I tell the nurse my birthday (just another few months until we get to celebrate!!), then assume the position on the bench.  I lay on my back, peeling down the top of gown #2 so that my tattoos are revealed, to be lined up with the red lazer level lights.  I nestle into the bizarre blue mold they made of my upper body a few weeks ago while the nurses zoom the bench up/down/left/right to find the exact location for my body.

A sample IMRT machine.  My green machine looks a bit different - not so bulky.
After I asked a few questions this afternoon, I learned that the 0,0,0 (or very center) of all of the axes in the room is my tumor.  And it's only when the tumor is moved into the exact correct position that the high dose radiation begins.  There is an arm, moving in a circular motion around the bench (different from a CT scan machine) that whirrs and buzzes, these noises being the only indication that anything is happening.  Inside the arm there is a layer (visible only when the arm is above your head) that contains the radiation beam.  There are leaves made out of lead that form the shape of the beam (invisible) - in the shape of my tumor!  Once the nurses set you up, they leave the room and control the machine from the computers in the hallway.  I asked the nurse about covering up my very important reproductive parts, but she said that you get much more scattering with a lead cover than without, since the dose being delivered is so powerful and focused.

It's all very surreal and it's hard to know what's best to think about while you're laying on the table, waiting for the beams to do their job.  I will publish a list of my own thought choices at the end of treatment (and I'd better find something better than what I thought about today - somehow, envisioning your own death doesn't make for easy breathing), but I'm open to suggestions since so far all I can hear is the lousy Christmas music playing in the green machine room.  After 20 days of this, chances are holiday music will probably never sound quite the same to me again.

Dan came with me today (even though he couldn't come back with me, nor did we see the doctor) and after I was finished, we went to pick up the newest member of our home, Felafel the Aloe Plant!  A wonderful friend (experienced in cancer treatment) advised me to make my radiation appointments for late in the day, go home and put some aloe on my treatment areas (mediastinal! also known as my chest), a clean tshirt on top and then relax/pass out.  So we went to a local gardening store and purchased the lovely plant pictured above to assist with the healing process.  We struggled with the name for a few hours.  Prickly Pete? No, my dad names all of the mice he catches Petey.  Cactus Carl?  Nah, it's lacking warmth... Judah suggested Henry, Giraffe, and Flower, but in the end, I went with Dan's suggestion:  Felafel - it has a nice ring (not to mention it's one food that holds happy memories).

While Felafel is my radiation plant, I hope to keep him alive more than 20 days (let's just say I don't have a green thumb).  I like the idea that we are bringing life into the house - even if it's not quite what we were hoping this year would bring. 



  1. I loved hearing your voice earlier. Smooches smooches. And at first i thought that pic was you, and i was really thiking about those shoes. I thought, "they are cute! But they are not really mia. Did she get them in California?". Glad your machine is sleeker and your technician is no doubt smokin hot :)

  2. We will keep felafel alive for well over 20 days, and you for well over 20 years. I love you, keeper of the aloe, and I look forward to adding much life into our house.


  3. Glad you found out about the aloe trick. I just called mine Al. Pretty white bread, huh? Sounds like you have the routine down pat - - I know it gets pretty boring after awhile, but the radiation staff is a nice lot - - - they see some sad stuff on a regular basis, so people like you (with a sense of humor) are welcomed usually with big smiles!! Hmmmmmmmmm....thoughts on the radiation bed: You can think about your clever blog postings, or wild things to do with your new hair!!! Mine was only 7 minutes long and when the session was over, the poor guinea pig doc had to come in and wave a Geiger counter over me (I had internal radiation beads shot in - - - no spray).
    You are doing SO WELL!!!!! I know you can hardly wait till the end, but at least it's in sight now. You're in my prayers every day :)
    BTW - - - so sorry about the nap-ending thing....everyone hates it when it's over.