Tuesday, July 30, 2013

Radiation: FINALLY!

It feels like months in the making...wait, it was months in the making. Originally I was supposed to start radiation at the end of May; then the middle of June; then a 4th surgery came up and radiation was supposed to start on July 15th. Well, the 15th came and went and through no fault of my own, radiation was still not on the calendar. I was getting really tired of this "hurry up and wait" routine. And I was only a little (okay, a lot) bitter that I missed out on the family vacation because of this. Grrr.

Well, I had my radiation simulation on the 17th, which means I was cleared to start radiation yesterday. FINALLY! So, the simulation was a pain in the ass: two hours of not moving all while breathing weird, holding your breath on demand, etc. Everyone promised me the actual radiation experience would be much better and faster.
And, would you believe it?! THEY WERE RIGHT! Holy crap! When has that ever happened during this whole process?!

As you can see from these pictures of the machine, which I'm willing to wager probably costs $12 billion dollars, radiation is pretty much like getting a CT scan, MRI, or PET scan, except you're not actually fed through a tube of death. Instead, the beam of radiation moves around you as you lay flat on the table. I am being radiated in three separate spots across my chest and armpit, so I get to lay on my back with my arms raised above my head. (You can sort of see this in the second picture). 
Everyone has been asking, "what is radiation like?" And now I am such an expert after two whole days of it, so I can share the details. Here's what I get to do EVERY DAY for the next SEVEN WEEKS...yes, it really is every day...

(1) Get changed into an awesome gown. Because only the top half of me is being radiated, I get to keep my pants on (YEAH!). I've been wearing my comfy jeans because it's not the warmest room I've ever been in. And my great new flip flops. 

(2) You get to wait in the waiting room until they call you. This is complete with mini fridge, make your own coffee/cocoa/tea, water, snacks, comfy chairs, and a soothing waterfall. Terrific, my insurance is really getting their money's worth at this BRAND NEW facility.

(3) They call you ON TIME! Like to the second. Holy shit, those chemo folks could learn a thing or two.

(4) Back to the room with the fancy machine you go. Gown opened, lay down on the "cushioned" "table" (using both of those terms lightly), arms above your head. The techs are AMAZING (as, quite honestly, everyone has been through this process...well, except for the billing departments, but that's another story). I am offered heated blankets for my legs and arms, and they prop up my knees with a pillow. I get to look up at the twinkling starry sky mural (again, my insurance $$ at work, I'm sure), while they adjust me to where I'm supposed to be lined up with the beam. (I now have several tattoos to mark my center so they can put me in the same spot every time).

(5) I get cool virtual reality glasses because I get to do a "breath hold" technique. When they zap me with the beam, I have to hold my breath. The glasses help me see the lines that tell me how deep to hold my breath and for how long. Hard to explain...maybe I'll get a screen capture of the computer in the next week or so. The reason that I have to hold my breath during radiation is that my awesome heart is really not in the right place compared to where my cancer is. And since I don't really want my heart zapped with radiation, holding a deep breath causes it to shift locations and away from the beam. It's actually kinda cool to see the CT scan of how they determined this.

(6) Once I'm in place, glasses on, and everything is lined up, the techs get to leave the room (because it's radiation you know and they don't want to be anywhere near it). Then they start the process. It's four distinct zaps of the beam and then I'm done. Takes about 20-25 minutes, start to finish, with about 5 minutes on either end for changing and check in, etc. 

Sounds easy, right? Piece of cake, right? Okay, compared to chemo, it totally is. 

However, there are some quirky things here. 
--This every day thing is already getting old and I'm only two days in. 33 more days to go. Crap, this is gonna put a crimp in my social calendar. And the family's. The girl child is going to DIE because she cannot make random plans with friends, at least if she wants them to happen at our house.

--All those back to school trips we take to Oregon will likely have to be done without me. Did I mention this every day thing? My whole life is revolving around this now...ugh.

--Once you are in place on the table, you CANNOT move. AT. ALL. Not even a twitch or a sneeze or the process of setting you up has to start ALL OVER AGAIN. Wanna know what it's like? Turn on the A/C at your house, lie down on the ground (sorry, the bed/couch is way too comfortable), put your arms above your head at funky angles, turn your head just enough to one side to be uncomfortable, put on some glasses that pinch your nose and leave an indentation on your forehead (I actually think after a couple of more days, this might become permanent), uncover a body part that's typically not seen on the beach...now DON'T MOVE for 20 minutes. And every couple of minutes, hold your breath for a minute. But DON'T MOVE! Don't twitch, sneeze, wiggle your finger, because they will know! I'm not even sure I blink.

And the other question I get, "what are the side effects?" I've been told TIREDNESS (great, because I just haven't had enough of that in the past bazillion months) and "really bad sunburn" soreness. Sounds fun! Because I know where I've been zapped, I can see and feel it already, but it's not bad yet. So I'm guessing that it's a buildup to the badness, and I might just get the first week symptom free. KNOCKING ON WOOD NOW!

Monday, July 29, 2013

Music Monday

Okay, NOW I'm really starting radiation.

So, I'll post the "real" version of this song, by the amazing Alicia Keys.

Maybe the treatment delay was some cosmic retribution for posting the Glee version first...

Friday, July 26, 2013

Books I Loved Before the Diagnosis Which Really Resonate Now

In my other life, I am a pretty kick-ass school librarian, if I do say so myself. Hey, I work with middle school kids...that right there has to make me slightly insane and monumentally interesting. Obviously I am ALWAYS reading to stay current (I read somewhere in the neighborhood of 325-375 books/year). You can find out all about what I'm reading and recommending (not just for teens) on my library blog. 

Today on my library blog I decided to post my personal "Top 5" books where cancer plays a starring role. And then I decided to copy the post here because I think that all 5 of these books do a great job of dealing with the illness but not making it "another book about cancer." Without further ado...

Because I'm starting radiation on Monday, I thought that I would use today's Friday 5 to recommend my Top 5 fiction books for teens where cancer plays a starring role. The upcoming 7 weeks (every day, 5 days/week) of radiation will end just about the one year anniversary of when treatments (chemo, surgeries, more surgeries, etc.) began. It has been a long hard road that you can read about on my cancer blog if you are interested. These are books that I read pre-cancer diagnosis, but still resonate with me for "ringing true" to what it feels like.

(1) The Fault in Our Stars by John Green. I shouldn't actually have to say anything about this book, because it is pretty hard to go anywhere without seeing this book, or it's awards, or hearing talk about the upcoming movie, or watching the author's many videos online. I have had a not-so-secret crush on John Green for ages, but I swear this did not influence how I felt about this book. It is simply AMAZING! And, as I always say, you cannot be my friend anymore if you do not read this book.

(2) After Ever After by Jordan Sonnenblick. Another author that I am a huge fan of and read every book that he's ever written immediately upon publication (if not before). Jeff, 8th grader and cancer survivor, is such an authentic middle school voice. Of all these books, Jeff is the character I can relate to most. Humor and heartache and typical teen boy angst all rolled into one. Darn near perfect in my opinion.

(3) Me and Earl and the Dying Girl by Jesse Andrews. I promoted this book throughout 2012 in my webinars and seminars as the "funny man's" Fault in Our Stars. This is an excellent read, and the perfect story about trying to be the supportive friend of a cancer patient. And how, despite the best intentions, teen boys often screw it up. Love it!

(4) Drum, Girls, and Dangerous Pie by Jordan Sonnenblick. See, I told you I loved this author. In this book, which was actually the first book about Jeff (see #2 above), we actually learn of Jeff's initial cancer diagnosis through the eyes of his older brother Steven. Such a terrific look at family, love, and how life goes on. Told, of course, with the author's perfect mix of humor and warmth.

(5) A Time For Dancing by Davida Hurwin. This is the book that I always went to when those teen girls wanted something to make them cry. You know who you are. (Now, of course, I can also recommend TFIOS also...see #1). This is such an amazing story of friendship in the face of adversity. It still resonates with me all these years later. And a shout-out to someone for updating the cover!

Monday, July 22, 2013

Music Monday

I actually promised myself that I wouldn't use this song as a Music Monday. 

Prior to my cancer diagnosis, this song could make me cry on a good day, and seemed so depressing. Using this song here seemed like I was admitting defeat. 

Funny thing is, now it doesn't really make me cry anymore. And I've rethought it's message. Now it seems very positive and uplifting. 

Seriously folks, don't know how many times I can say it, Live. Life. To. The. Fullest!

Saturday, July 20, 2013

Help a Kid Out!

I have had the honor and pleasure of walking in the 3Day twice (both times with my amazing friend Laurie!). Good God, did we have fun (although I'm not sure I would've classified it as "fun" while I was doing it...especially the year that it POURED rain on us). I would not trade the experience of walking in this event for anything, and someday, I hope to be able to do it again, as I now have a completely different perspective on it.

Almost immediately after I was diagnosed, my dear friend Deb decided that she was going to walk in this year's 3Day for me. And then, immediately after she decided to do that, her 16 year old son (a former student of mine), decided to join her. AWESOME! I love them both dearly for their commitment to the cause, and for their support of me. I hope that I can get out on the course and CHEER THEM ON in September! Please join me!

Here's the thing: in order to be able to walk in the 3Day, you have to raise $2,300. (Now, regardless what you might think about the recent politics of the Komen Foundation, this money does do good things. I wish that more of it went to research, but that's a discussion for another day). Having raised this money twice, I know that it's not easy to do, especially in this economy. I think one year, I went right down to the deadline before meeting the goal. Deb hit the $2,300 goal some time ago, but Nolan has not. When you are 16, not a lot of your friends have the kind of money, or the desire, to donate to your cause. Amazingly, he is a little over halfway there. And I think that we can put him over the top! If you have ever considered supporting a walker in the 3Day, this is your guy! (Thanks to those of you that already have, BTW). I donated my $25, and every little bit helps...even a few dollars.

I'm including his Facebook status the other day so you can see what kind of kid this is. Plus some pics: (1) me with him and his mom, and (2) the mohawk that he will sporting for the walk (which will, of course, be dyed pink). And please note, this kid just gave up participating in a music concert which he had been practicing for because he just found out it falls on the same weekend as the 3Day.

"Friends and family, This September I am taking part in the Susan G. Komen 3-day 60 mile walk for the cure. When I attended Evergreen Junior High school as a student, the librarian there eventually became a family friend of mine. Recently, (in 2012) she was diagnosed with breast cancer leaving her fighting but inspiring me. She is the reason I am walking in the 3-day. In order to walk I need to raise $2300; with your help I will be able to walk for her and the cure. 
Thank you in advance for your support of my 3-day journey,

Love him as much as I do? Here's the link to donate to his efforts.

Tuesday, July 16, 2013

In Which I Spoke Too Soon...

Damn it! I knew posting that Music Monday yesterday and being all excited to start radiation would come back to bite me in the ass!

Through NO fault of my own, but entirely due to many doctors not understanding what/how the others were thinking, I did not start radiation yesterday. Ugh.

Soooo complicated to explain what/where/why it went wrong, but here's a quick update with a "new" plan of action:
(1) Yesterday, doctor appointment with the surgeon to get the "okay" for radiation. Which she gave...I think the appointment lasted 6.7 seconds. And yet, I still love her.

(2) Today, doctor appointment with the chemo doc to talk about my next round of drugs from her. Nope, no more chemo, but now I am "well" enough to start Tamoxifen. This is a pill that I will have to take every day for the next five years. DON'T FORGET to take it every day, she says. Ha, ha, that's funny. Have you not read my post about how I can't even remember to take my vitamins??? (I do have awesome new daily pill dispenser, FYI! Thanks!)

(3) Tomorrow, doctor appointment with the radiation doc. (See, you people think I'm making it up when I say that I've had 9,000 doctor's appointments...I really think this might not be an exaggeration). This is what I've been calling "practice radiation." I've now been given the proper term: radiation simulation. I think this will make my parents (and some of you who have voiced concerns over the fact that they're practicing on me) feel much better about the whole situation. Simulation is where they tattoo the spots they want to radiate (yes, actual tattoos...that are permanent...lucky me! I hope that they're "X marks the spot" tattoos!). Then they feed me through a CT scan machine for the better part of TWO HOURS (WTF??? Can I read a book while this is going on? Two hours?! One friend suggested I sing, loudly and badly, the entire time unless they let me at least listen to a book). The imaging is then given to a ???? (am not clear on this part, perhaps a doctoral candidate in physics?) who determines all the angles and whatnot that I need to be given the radiation so that it will do the maximum good with the minimum damage. Remember, one of the 3 areas that they will be radiating is in line with my heart, so my choices are heart damage from radiation, or lung damage. I opted for lung. And hopefully whoever this person/computer is that calculates all the trajectories is brilliant and finds a way to avoid both.

Will let you know how it all goes. And when my start date ends up being. Rumor has it, it takes a week to make all the necessary calculations, so hopefully will start on the 25th...or 26...thinking with my luck it might be the 29th. 

Monday, July 15, 2013

Music Monday

I should  be starting radiation today, assuming that all goes well at the final check in/pre-radiation appointment. I thought that I'd use "Girl on Fire" for today's Music Monday because...well, why not?! You've gotta see the humor in this song selection.

Yes, I totally LOVE Alicia Keys' version, but thought that I'd post this cover from Glee. Because I really love Naya Rivera's voice (and her character on the show) and I think that she does a pretty good job with this song also.

Monday, July 8, 2013

Music Monday

This was recommended to me by a friend, exactly when I was thinking of using it! It's just a fun song (and really popular here in Seattle so it's played ALL the time). I'm sure I look so funny when it's on in the car and I turn it up REALLY LOUD.

Tuesday, July 2, 2013

How I Feel Today

It has been 9 weeks plus 1 day since my last round of chemo (that's 64 days for those of us with math skills). Since that dose on 4/29, I've had scans, scans, and more scans, a bazillion doctors appointments, and another round of surgeries (three surgeries on one day, for which I'm sure I will be billed triple). And I have tried to rest and recuperate in anticipation of radiation starting on 7/15. Oh, and I've picked a fight with the DMV.

This is the part of cancer treatments that gets a little sketchy. Your hair starts growing back, you get a little energy, and people start to forget you have cancer. Or they expect you to be better. Or your school district can't imagine why you can't possibly be at work and therefore needs yet another doctor's note proving you are sick. (Let me repeat: IMMUNE SYSTEM COMPROMISED + MIDDLE SCHOOL KIDS = NOT HEALTHY). You don't look like a cancer patient, so people don't realize that you still feel bad. (This is not a rant against my family and friends, by the way...all of you have been amazing. But the random person looking at me on the street probably doesn't realize what I'm going through simply by looking at me).

Since I think I did a "here's how I feel 2 weeks after chemo" post, and maybe another one at one month after, I thought I would continue the tradition with a How I Feel Today, a little over 2 months post-chemo. I hope that it helps anyone going through the process (or their loved ones) understand that how you feel doesn't magically go back to "normal" the day after chemo. And unfortunately, some of these items listed below are permanent or could be YEARS before they go back to the way they were.

In no particular order:

(1) I have dropped 8 of the 18 or so pounds that I gained. I feel like the last 10 will NEVER go away and had to resort to accepting my mom's offer to buy me some summer clothes. Ugh. That's a size I've never seen before...

(2) My taste buds have sort of returned. I almost hate to type this as I'm sure that I am tempting fate, but I'm pretty sure that they are 2/3 to 3/4 back to what they were. Some things still taste funky, and I can eat much spicier food than I used to be able to tolerate. I actually think that this is the new normal for my taste buds and that there is no getting better from here. But having been to the dark side, I will not be complaining about this. THANK YOU to everyone that has taken me out to eat these past months and said, "what would YOU like to eat?" 

(3) My feet are still numb. Not 24/7, but enough of the day to be weird. But again, I'm so used to it now that I don't actually notice it except at night when I'm not walking around and they are tingling. And I think my one shoulder blade is actually still numb in places. But I told the doc it was better so that'll just be our little secret. (And I typed "is what" instead of "it was" on the first go-round here...see #12).

(4) My temperature regulation is CRAP! Chemo-induced menopause still in effect here. I really feel like this one might be permanent also. Some days it is SO HORRIBLE. I can be such a sweaty mess at times, and no, it's not because it's been hot here or after I've been doing something active. I just randomly start dripping from head to toe while watching TV, shopping in a store, standing and talking to people. Super fun!

(5) I am holding my fingernails on with a wing and a prayer...I feel a little like McGyver. I know that I've said for WEEKS that they are days away from falling off, but I really do mean it. So far, I haven't lost any, KNOCK ON WOOD. I do have to keep cutting them short and gluing them together and I swear I am one snag away from losing 3 of them at once, but I still have all ten. They are UGLY though...all black and brown and detached from the skin in places.

(6) My foot is feeling better, but I still have to walk around in cushy shoes and wear band-aids. Just when I think I'm better, I try to go up the stairs or stand for a period of time without the shoes and I realize that it hurts. (Totally not related to chemo, but thought I'd mention it).

(7) I still have bruises from the latest surgery, especially where the port was. Beautiful greenish-yellow bruises. 

(8) I have no feeling in the skin for about an inch all around the 3 inch scar across my chest. I don't think I ever will either. Four surgeries pretty much killed all the nerves there is my guess. And the scars are angry looking. Not infection angry, but it looks like I need to come up with a good story to accompany them. One friend sent me a card that suggested I say I fell in the fountains at the Bellagio...sounds perfect! 

(9) The area in my breast/chest that has been operated on so many times is, quite understandably, missing quite a bit of tissue. Now, you'd have to stare at it pretty hard to really notice (because I'm a master of dressing and didn't really have any boobs to start with), but in this warm weather when we've all been wearing tank tops you can really see it. It's about the size of a little kid's jumbo sized crayon and runs perpendicular to the scar. Running my hand over the area (which I have taken to calling the divot) to put lotion on the scar kind of freaks me out. 

(10) My hair is growing back. The hair on my head is really a horrible color. I'm thinking it's going to be dyed some cool color in the very near future as I really can't look at it anymore. My eyebrows are coming in a different color from my hair which is awesome (NOT!). And I'm a little grumpy that I have to start shaving my legs again. Especially because I don't have eyelashes yet. Seriously?? Can my system not figure this all out please?!

(11) My short term memory BLOWS. Please don't tell me it's because I'm getting older and that it happens to everyone. I don't really care. I think I might actually qualify for a study/treatment at the UW for this. If only I could remember where I put the information about how to contact the program. I wish I was kidding!

(12) I have developed some sort of weird stroke-like symptom where I'm saying words in my head, but they come out of my mouth all garbled. It doesn't happen all the time, and so far no one has pointed this out while it's happening, which means either my family and friends are really polite and ignoring this OR it's only happening in my head and I'm the only one that can hear this. I'm kind of scared that it's the latter.

(13) I suffer from shortness of breath a lot. All this chemo damaged my heart. 

(14) I find out in 2 weeks if I'm healthy enough to start Tamoxifen. This will be a pill taken every day forever (or 5 years...same thing) and is something I get to do because my cancer was estrogen positive. Last month when I went in for evaluation for it, I was not deemed fit to handle it. Probably because I was just coming out of my 10 days of PAIN and I wanted to kill everyone.

(15) I CANNOT remember to take my vitamins every day (see #11). I've tried everything...setting a reminder in my phone...moving where the vitamins are kept...NOTHING works. And then when I do remember to take them, I can't remember if I've already taken them for the day (again, see #11). I really do need to break down and get one of those old people weekly pill containers.

(16) I did not have any allergies this year. This was kind of a perk. Granted, it's because my immune system is still shot to hell, but if there are small mercies in this whole process, then I'll take this one.

(17) Things I probably should ask about at my next appointment: Should I still be staying out of the sun? (I think yes, but I'd like to hear no). Is it okay to drink that birthday mojito or is my liver still on overload from all the poisoning the chemo did? When is it okay to go to the dentist again? (Well, I really don't want to ask that one because I'm okay with not going to the dentist, but I probably shouldn't avoid it any longer than I have to).

(18) Being TIRED for no reason at all, at random points in the day, and without warning goes without saying. I cannot imagine a time when I will ever be able to go back to work full-time again.

(19) So very thirsty...all the time...

(20) I have ZERO hand strength. The biggest inconvenience is that I cannot open anything...like bottles of water/tea. In fact, as Keith is getting ready to leave for 3 weeks with the kids, I told him to open all the bottles before he leaves or I might die of dehydration!

I have good days and bad days still. I've said this quite a bit, but yucky is my new normal. It's amazing how crappy you can get used to feeling. I hope that some day I won't feel like I'm a 60 year old...at least until I really am a 60 year old.