Because It Needs to Be Said

Okay, I'm just gonna throw this out there because it needs to be said...

You know that post that I wrote about "what not to say to cancer patient?" Yeah, the one that went viral and now everyone is reading? The one all of you have freaked out just a little bit about?

Here's the thing...if you are worried that you have said the wrong thing to me or someone else that you know, you are NOT the one I was writing the post for. If you are concerned about what you said, odds are you didn't say the wrong thing. 

And keep in mind, it was really about just helping you understand how many questions we patients get asked on a daily basis.

Also, my mom has decided that none of the rules apply to you if you are the mother of the patient, so she wanted to make sure that I added that as a disclaimer. Got it! 

It's Groundhog's Day All Over Again

Yesterday marked the end of radiation, week 3,000...or something like that. 

Lather. Rinse. Repeat. 

Or, as one friend put it, "your life is kinda like Groundhog's Day, isn't it?" Yep! That's exactly it. No kidding, it is so weird to live the same day over and over and over. I kinda feel Bill Murray's pain now.

The only remarkable things about radiation this week were: 
(1) the day that ALL the handicapped spots were taken in the parking lot. This was definitely a predictor of how slow things were going to be that day. I knew we were in trouble from the get-go...

(2) at the weekly visit with the doctor, he was stunned at how well my skin is doing. Holy crap! You mean something has actually gone better than expected? What?! That is completely unheard of for me, so I'll take it!! KNOCK ON WOOD that it holds up through the remaining treatments. And a thank you to the gene pool that allowed me to have good skin I guess.

(3) I think it's possible that I am finally getting over the PLAGUE that I caught last week. It's been almost TWO WEEKS now. UGH! Chalking this one up to continued compromised immunity. Looking forward to not being so susceptible to germs...some day...

(4) I've been really tired this week. So. Very. Tired. Had figured this was coming. Doctor thinks it might be low blood counts, but decided to chalk it up to the aforementioned plague (see #3). He will be more concerned if I'm still dragging at the end of next week. 

So, I think I can see the light at the end of this radiation tunnel. Three more weeks...if I've done the math right (which it's possible I haven't because I'm still stupid from chemo).

Here's What's Up

Tired of saying "radiation, radiation, radiation" and repeating on an endless loop, I thought that I would just jot down some notes about what it's been like to be me the past few weeks.

(1) I need MUSIC MONDAY suggestions ASAP! Comment here...early and often...please!

(2) We did the biggest back-to-school power-shop EVER over the weekend. Because I cannot be far away from my favorite radiation machine Monday through Friday, we had to cancel the annual Oregon coast/beach camping/shopping extravaganza. Instead, it became a blitzkrieg event, where we powered through every store possible in the shortest amount of time, barely stopping to eat. While it was exhausting (no, I'm never going to do this again), it was actually really fun. At dinner on Saturday night (at like 9:30pm because we just couldn't stop shopping) the four of us LAUGHED. A LOT. AT EVERYTHING. And I don't even remember most of what was so funny (except I remember some of it had to do with the fact that I'm not sure English is my children's first language. Did teenage boy really ask, what's a verb?). But it just felt good to laugh.

(3) I went in to work on Monday (because I'm dumb...I know). It was just for a couple of hours, and I didn't really do anything but stare and feel overwhelmed by the amount of work to be done before the start of school (somehow my library became a dumping ground over the summer). And how was I rewarded for this? By getting sick. So. Very. Sick. Damn middle school germs that obviously linger FOREVER. I feel like complete crap now. I get it...compromised immunity + school germs = sick. (Of course, I went up there again today. I figured, what the heck, I'm already sick. I know. I told you I was dumb). 

(4) Before I got sick and wanted to kill people because of this awesome sore throat and headache, I was starting to feel fatigued from radiation. I had a good 3 hour nap last Friday. And another one a few days before that. I haven't read a book in 4 days because I can't stay awake.

(5) I hate my hair. Everyone loves it, and I'm not saying that it's horrible. But the color is all wrong and the curls are driving me to drink. When I look in the mirror I do not see myself. I have decided to keep it short for awhile. And wear the Katy Perry wig for school pictures for the rest of my life.

(6) Chemo is the gift that just keeps giving. I am starting to make plans for the fall and eventually returning to work. Every day I think about what I can no longer do and how it will impact me going back to work. I've decided to make this a post all on it's own...stay tuned.

(7) Before I caught the plague, I was able to get out and exercise a little bit. I was doing pretty good and trying to get out every day. Until about a week ago. And then I got tired. And then I got sick. Hoping to pick it back up again by the weekend. However, last 10 pounds still not coming off and the clothes still don't fit. Super frustrating.

(8) Really missed not going ANYWHERE this summer. Radiation puts a crimp in your social calendar, that's for sure. I feel like I deserve a vacation when this is all done!

(9) To end on a positive note, my former student Nolan has reached his fundraising goal and will now be able to walk on the 3Day (here in Seattle in September...just a few weeks from now). His mom Deb, and another friend Julia also reached their goals, so I'm hoping to be able to get out and cheer them on. Who's with me?? Thanks to EVERY ONE OF YOU that donated to Nolan (or anyone else that is participating in the walk). It is terrific to see so many of my friends on his "supporters" roll call! And thanks to all of you that are supporting anyone participating in events that raise money for cancer causes...Obliteride, Relay for Life, etc. And those of you walking/running/riding for a cure. (Check out one of my students who walked this spring in a Relay for Life event...go Abbey!) 

Radiation is Monumentally BORING!

And a giant time suck!

And really cutting into my social life!

Every day the same old thing. Blah, blah, blah. 

Thank goodness for the friends that are driving me every day. This does actually make it quite a bit more enjoyable than it probably should be. Entirely more fun than a girl should be allowed to have. I highly recommend this as a strategy to anyone who has the misfortune to have to go through radiation. Conscript friends into coming with you. A different one each day. It's the most creative way I can think of to keep in touch. And honestly, you don't feel quite so lonely. And then you have witnesses to the craziness that is your life!

And as for radiation itself, well, I guess not every day is boring.

There was "take you grandparent to radiation" day. That REALLY put a crimp in my day when it was running 45 minutes behind schedule.

There was the day when I decided to mention some interesting symptoms I was having...it went something like this:
Me: So, I'm having some shortness of breath. I'm totally used to this with chemo, but thought it was better, and now it seems to be back. And since you're radiating my lung and all, I thought I'd bring it up.
Doc: Hmmmm, that's unusual and shouldn't be happening. We could send you for X-rays? Blood counts? Appointment with chemo doc?
Me: yeah, I think I'm fine. Lets chalk it up to chemo, the gift that keeps on giving. Gotta run, bye!
(Because the minute anyone mentions X-rays, scans, blood draws, or more appointments I have learned to RUN from the building).

There was the day when the computers weren't synch-ing properly (the one the techs were using and the one that controls the machine) and everything went soooo slooooowly. Kinda reminded me of being at school.

And then there was today, which started off great (sarcasm) when the tech said, "Hmmmm, that's interesting." Yeah, when they have to page the physicist on site to come check out the "weird" thing the machine is doing, you know that you are in for some fun times.

Just so you know, I am going to be doing some "Take Care of the Caregiver" guest posts over these last many weeks of radiation so you don't have to hear me continually say: radiation...blah, blah, blah...
Stay tuned for those! I'm very excited for you to hear what it's like to be a caregiver.

The New and Improved Me

I realized the other day (or maybe a month ago and I immediately forgot again until just the other day) that I had only posted recent pictures pics of the "new me" on my Facebook page.

So, I thought I would post a few here to keep you updated on what I'm looking like.



(1) What my nails look like still if I let them grow out. I'm hoping that you can tell from this picture how the longer they get, the less they are attached. So then I have to cut them short...and then when they grow out the process starts all over again. So much for that career as a hand  model.



(2) The Sharpie drawing all over me for radiation simulation. The blue dashes mark the entire area that is radiated (it goes from sternum to armpit, collar bone to below my left breast). The black dot in the middle of the "cross" that you can see is a permanent tattoo...and there's a matching one in my armpit. Damn. I was really hoping for something much cooler. At least an "X" marks the spot kind of tattoo. That beautiful scar that you can see is my surgery scar...about half of it. And there's a matching one of those in my armpit also. 



(3) The new me, with my awesome pixie haircut. When  your hair initially comes in after chemo it's a combination of straw and cat hair. I'm not sure how else to describe it, but it HAD to come off almost immediately. Thank goodness for friends who are hairstylists! Next stop, maybe some color because this current one is all kinds of NOT ME. I'm thinking purple...or Katy Perry blue.