"I still think this life we have is a gift and we have to try to be happy. I don't know if it's a right or a privilege, an accident or a figment of our imaginations. It's something everyone wants so much. It's everything, Happiness."
-Guy Adkins
It's true. I have total Zac Effron hair right now. I'll take it. I don't have his dreamy blue locker room eyes, sadly.
Radiation is over. I feel great besides a shoulder tendon pull from laying in that radiation bed for 6 weeks. Nothing major.
We leave for Denver on Friday. Just three days but it will be very fun. Our trip to Hayward with my sister and brother in law was epic and wonderful. Jason and I both cried on our first boat ride. For me they were relief tears. For him they were "I'm scared I will feel this worried forever." tears. Both healthy and normal I think. Once that was done we just had nothing but fun.
I guess I should talk about my feelings....hmmmm
I feel odd. Good. Changed. Ready for something very new. So happy with Jason it almost hurts but doesn't. 17 pounds lighter, literally. 300 pounds lighter figuratively. I'm starting to forget the physical pain and chemo/surgery feelings which is good. I'll never forget they were there but they aren't on my surface all the time anymore.
Mostly I'm just really excited about the upcoming Disney Special Musical presentation I'm currently shooting called "High School Musical 46! We Failed Math and are Being Held Back!" It's got some great jams in it and my real life girlfriend, Vanessa Hudgens, and I might break up! Tune in to see.
I was riding the bus to Rush Medical today for radiation and was feeling heavily brained. What's next? How do I get to a point where I love what I do? When will I start doing what I love? Etc.
RIGHT as I was thinking this I looked out the window and saw some graffiti that said, "try harder". Deal. That makes sense.
About 3 miles later I looked out again and on a garage it said "forgive yourself".
No I'm not talking political leanings....am I right people??? (leans on mic stand...snaps rainbow suspenders) but seriously folks...what IS the deal with ugg boots?
Anyway, My Leftness is my new term for my area that is being radiated. It includes my breast, obviously, otherwise I would have been diagnosed with blank cancer. It also includes my arm pit and collar area, etc. Anyway, it hurts inside! I can tell it's cooking. It doesn't burn but it feels like I have a bunch of cut up muscles in my boob. Horrible sounding I know but it isn't. It only hurts when I bump it....solution? Don't bump it! I protect it like a ming vahhhhhze. ming. hahahhaha
I've started talking to my leftness too. In my head I keep saying, "Leftness...when all of this is over I'm going to take you out for a nice seafood dinner and maybe see a movie. Hop over to the Poconos for a long weekend just the two of us. Sumthin real nice, baby."
I'm not sure why I'm a bad Italian stereo type mafia husband in this senario but i'mma gonna run wit it.
Time to go eat a steak with my husband in the yard.
Things are fine. Had my Avastin infusion today and then radiation and x-rays. Back at work pluggin away. I have been a little crabby this week and I keep praying it's PMS but no luck on that front yet.
I woke up and decided to try and not take everything too seriously. That seems to be working. I also decided to drink one Slurpee a day. They are terrible for me but really up my happy levels.
My trip home with Megan for my nephew's graduation was outstanding. Emotional but great. My family is just so good for each other. I was homesick before I even left.
7-11 has pretty good roast beef on light rye sandwiches.
What else....oh lost five lbs and BP (blood pressure not the spilly oil co) is down again a little bit which is good. They think it's up from the Avastin but either way I could stand to lose oh say....four gazillion lbs.
Essentially all you really need to take from this post is that 7-11 provides most of your daily needs in one convenient location of which there are many across the greater Chicagoland area.
*this was hard to write and will be harder to read for some more than others. Be careful sweet friends who know who they are*
There was a young guy, Jason's age at most, in the radiation ward/clinic/area that just about did me in today. I couldn't look at his face but I know he was tall and ill and bone thin and terrified. I didn't really look at him because it felt....I don't know....just not for me to see. But I'm telling you hand to God...I could feel his fear. It was holding him hostage. The way the nurses (he had to have two to help him walk) were speaking to him had that tone...trying to sooth him....ugh....I can hardly write about this. Taking break. Please hold. (Girl From Impenema - Musak Version 5).
Okay. Had a stick of gum and put on some lipstick like my Mama always taught me when in need of getting ones self together.
So it was awful. And palpatable. And just heartbreaking. He was in my world for no more than 20 seconds but I feel like I will never get him out of my head.
He just felt like he was a sad and skinny and afraid representation of all that stupid cancer is. It made me so mad and confused. And so selfishly happy for my life and my hopeful outcome. It was a truly consuming moment and I hate talking and thinking about it but I need to get it down.
Man. Dang it. Please know your call is important to us. We will be back with you shortly. (Classical Gas - Musak Version 1).
Pheww...so let's get to the titular brighter side of this story, shall we?
On my cab ride home I put my phone away and rolled down the window and took in as much air as my lungs could handle without combusting and I realized what I want and feel like I have to do with my life. I need to find a way to take even the smallest pinch of that fear away from people going through this. I'm not sure exactly how that will be yet but I can tell it's going to come to me soon. Because the fear is what I can't get over. Seeing it in others much sicker than I am....feeling it in my own heart....hearing it in every word my family says to me...it's terrible. It's a cancer unto itself. I am not as scared anymore but it will always be there now. Like my boob scar. The only way to reconcile my anger at that fact is to find a way to ease some of that fear in someone else. Maybe that's sign one of a God complex and I'm actually not having an epiphany but rather about to snap my noodle and run for Mayor of Looney Toon County. Either way.
Since day one of this little adventure I knew a message was waiting for me on the other side. An answer. I've trusted in that this whole time and I can feel it happening.
Ohhh I sound so dramatic and I hate that. But crap...it has been dramatic. Dramatically good and dramatically hard and dramatically terrifying and I will never be the same. Nor should I be.
Anyway, I love you all and something weird is going on at work (just construction guys...not like WEIRD weird). I better go.
I keep trying to post this and I keep losing it....by "it" I mean the post not my cool or anything.
So let's sum it up fast and furious, shall we?
Feeling way into the swing of radiation already. Feels like part of my day. Love the techs and doctors. The waiting room is cold. Two latin sisters fighting everyday. Cab rides.
Got it? Good.
Love, C
PS - I tried to post a pic of my hair growing back but it's not working. It's on Facebook anyways. Go there to see if you are so inclined. Smooches!
I am nervous about my first radiation but not so much about the procedure, more about getting there and back to work in a timely fashion. I'm going to try route one of three today and see how that goes. It will involve me taking the pink line train with seems fitting. The Breat Cancer Train!
I also noticed I ate pink yogurt and half a pink doughnut today inadvertently. Oh god. And I'm wearing pink. I swear I didn't even notice that until just this second. Too tooooo funny.
On the train ride to work today I ALMOST got overwhelmed by the 32 radiation treatments coming my way and was kind of tearing up behind my Panama Jack sunglasses (don't be so jealous....it's not for me to say how cool I am because I fashion shop at CVS) when I remembered Jason's song to me last night.
We had opened special bed up for a rare appearance to stay cool and watch movies. He was on the sofa and I was on special bed watching the hockey game. I was just about to nod off and Jason starting singing "I just want to lay around wit-chooo...." in his best R&B high voice. Then he'd laugh at himself. Then he'd sing it again. The whole time pushing me over to make room for himself. Certainly falls under the category of "you had to be there" but it was very funny to me.
Anyway, that song came into my head at JUST the right pre-meltdown moment this a.m. and I started laughing to myself. (I'm sure they are THIS close to putting up posters on the train "Beware of Crying/Laughing Girl in Wig".
So I feel better now, thanks to Jason and his wacky song stylings. I can get through this portion of treatment too. It will be fine and I have to take it day by day as I have the rest.
It will get me out of the office every day. It will add some good walking to my weight loss plan. It will cut the chances of my cancer coming back by almost 70%.
One winter day I listed to this song after a rough few days. I heard it and felt like I might, truly, collapse into a black hole. Soooo dramatic but it's true. It happens. We've all been there and will be there again. Those songs that just capture you and seem to pop out of thin air with your exact emotions and memories. My sister Kendra would always say "This song makes me feel weird" in a certain Kendra voice that meant it made her feel a little sad or a little understood or a little too grown up too fast....take your pick.
I'm quite sure this song isn't about me and Jas. In fact I feel a little embarrassed to take it as ours since it's probably about war and the horrible state of the world. But as a good friend once said about a giant bag of Carmel corn..."I'm just gonna have some....k?".
We have word out to Jeff Tweedy that my cancer recovery wish is for him to play one round of washers with my husband at a BBQ. If that happens we might just ask him to write a song that's REALLY about us. I'm sure he wouldn't mind. He's not busy or cool or anything. (My thought bubble just drew a heart around JT's face and I sighed...for real.)
Back to the song.....the melodies...the chord progressions.....the words.....this year just balled up in a song. Every time I hear it I cry and cry and love Jason beyond any word in any language. Or maybe it's more that it makes me love us. I've always loved him but the duo we've become this year.....man...I don't even know how to finish that sentence.
Anyway, music. Is there anything it can't do? Okay it can't cure cancer but I bet it's working on it.
Lyrics below: Wake up we're here It's so much worse than we feared There's nothing left here The country has disappeared If the winter trees bleeding, leave red blood The summer sweet dreaming, april blush But none of that is ever gonna mean as much to me again.
Hold out your hand, there's so much you don't understand So stick as close as you can, all of the best laid plans You've got the white clouds hanging so high above you You've got the helicopters dangling angling to shoot, the shots to feed the hungry weekend news crew anchorman.
So every evening we can watch from above, crushed cities like a bug Fold ourselves into each others guts, and turn our faces up to the sun.
I won't take no I won't let you go All by yourself Oh no you need my help When the cold night shakes you like a chandelier The snowflakes break through the atmosphere, and melt on the blue breath of the auctioneers and disappear.
Every evening we can watch from above, crushed cities like a bug Fold ourselves into each others blood, and turn our faces up to the sun.
I've been joking that this picture (taken by my brother-in-law at my last treatment) should be the cover of Cancer Today Magazine. Not that there is one but there should be! Or Cancer Havers! or Cosmocancertin.
Anywayyyyy I am feeling great. Great great great. That horrible fog in my head from the chemo has lifted and I feel vibrant again. Like my laugh sounds more like my own and my emotions feel more....feely. It rules. I can't even believe I'm to this point.
I keep having these moments where everything lands on me all of a sudden and I feel like screaming and crying and break dancing and high kicking and eating with my mouth wide open right in someone's ear and punching walls and laughing like a lunatic all at once.
I had my first Avastin treatment Tuesday and I was nervous. I mean I've been getting Avastin the whole time with the chemo but I got it in my head that it might make me feel sick again. It didn't! Not at all! It was easy like a Sunday morning. I will get "infused" with that drug every three weeks until January 11th or so.
I start radiation on Tuesday. That is going to be a giant pain in the A but 6.5 weeks goes by really fast in the grand scheme of things. I will go every week day but it only takes about 30 minutes. I'm hoping not to have too many side effects (god...how those words have entered my vernacular sackular this year...side effects side effects side effects...terrible words).
The best news of the day is that my hair is already starting to thicken up. I would say by August I will be able to comfortably go wig and scarf free. Fantastic fantastic.
I have a little naggy fear that I imagine will never go away from all this. Side effect. Will it come back? Will someone I love get it? Will I take enough from it? and so forth. Seems normal to me so I'm not going to worry about it at this juncture. Wouldn't be prudent.
That's right. I just did a G-Dub Senior/circa 89 Dana Carvey joke. I'm back, ladies and germs.
After two of the hardest weeks ever post treatment I am finally feeling like myself again! It just hit me today that I won't have to feel those chemo feelings again!!!!! No more everything tasting like salt. No more sours in my mouth or tooth aches. No more nausea. No more shots! No more knee aches and head aches. No more waking up sure that heaven is a'callin!
Even though I know all of that it still hasn't all sunk in. All of this. I had a moment where I almost realized what just happnened but it started to make me feel a little shakey so I decided to wait a bit. I'll face it all down one of these days but for now I am just so happy that I am slowly but surely feeling whole again.
I start radiation on June 1st every day for 6.5 weeks so once THAT is done I think I will really feel some more freedom. I can't wait!
"Thank you for writing and sharing all of this with me. It's the greatest side effect of these notes that I write. I get to hear so many thoughts and stories from friends and from friends I don't know. It means so much to me right now. I don't know. It feels powerful, I guess."
-Guy Adkins in reply to an email from me.
Julie and I used to see every show Guy did in college when we were in high school. We ADORED him like an Elvis. He would walk onto the stage and just win the whole thing. There was a tenderness to him that endeared everyone who met him, as far as I can tell.
I feel a little assuming or presumptuous or one of those types of words even writing about him since my contact with him was limited to a teen crush then adult respect via his writings. But this year I've had so many dreams about him and think about him and read his words over and over. He chose to be honest about his cancer and I've tried to be the same because of him. It's hard NOT to eulogize a person who inspires bravery and honesty. So there. I feel like he wouldn't mind. I hope not anyway.
His notes on cancer terrified me and filled me with joy at the same time. Our cancer journeys were/are very different but he found ways to say so many of things that cross your mind when you are going through it. No matter what the cancer. No matter what the stage.
I reached out to him via his blog/email to just let him know how inspiring he was to me when I was a teenager and now, as a 35 year old with cancer.
Today I think of his heartbroken partner and his family and friends trying to understand all this. Ugh. Just the worst. But that love will live and live and live.
Then I think of Jason and all I want to do is spring him from work, buy a bunch of canned goods and pasta and fire wood and just lean my bald head on his shoulder for 87 years and only take breaks to pee and cook noodles. Alas, life calls and you have to live it with as little fear as possible. You have to.
He put into words so much of what I feel about this experience. He passed away last night into the storm. Full of light and love and music. Taken far too soon but finally free from the pain. He's everywhere now, I would imagine. Too many people loved him for his destination to be one finite place.
Anyway....perspective. Love works. Thank you for being my friends and family. Hug and kiss each other today and tomorrow and every day for at least 87 years, please.
Guy had a love bubble too. We are the lucky ones.
"So I forgot my troubles and just got happy. Try it. I mean really try. I've said before that I don't want a fight and I still feel that here but I think we have to try. I still think this life we have is a gift and we have to try to be happy. I don't know if it's a right or a privilege, an accident or a figment of our imaginations. It's something everyone wants so much. It's everything, Happiness. And I really have it. At least it seems like I do. If I'm deluded, don't tell me."-Guy's last post.
I painted this pic. Don't be so jealous of my art skillz, you guys.
My sister and brother-in-law came to sit with us for the last treatment. That was a really special gift. It has been hard to be so far away from home during all this. They brought some home here and that was simply lovely.
So far I feel like total crap, but who cares! This is the last time!
Man...it looks about the same but I've been adding bands daily!
In other news...last three bag treatment on Tuesday! I'm excited-ish. I'll be way more excited once it's over and I'm on the recovery end of it but I really am feeling the light.
I'm going to spray tan and grow my hair down to my B.
I realized last night that I don't know my body right now and feel invaded and that THAT is the worst part. People ask that a lot..."what's the worst part?" I'd say watching my family and friends be scared is THE worst but the invasion of the crescent-snatchers is a close second. However, it felt fantastic to understand that all of a sudden. It happened while I was holding Anne's new baby, Eden, and just couldn't control my tears and heartaches. It got worse when Jason came into the room. I felt like an animal...like my instincts were just going along without me. I felt my insides shake and my nearly lashless eyes started doing that tear squirting thing (PS - don't take eyelashes for granted...they really help when crying). I went into the bathroom and that's when it hit me. I don't look like myself, I don't FEEL like myself, I'm not dressing like myself....hell I don't even SMELL like myself. I hate that part. Because of that I am abnormally raw and crazy all the time, I think. It works the other way too where I'll laugh so hard at something people start looking at me like I might need a blanket and some soup. I used to have SOME control over my emotions but nope...not right now. Oh well. There are worse things, for sure. It's like everything is too joyous or too sad and they create this mix of crazy that just flows out of me no matter what the context.
It almost just happened again during a free chair massage at work.
First off, let me say that I should be getting massages weekly. Holy TOLEDO OHIO did that help. I know I know...they give free ones at Thousand Waves Spa for cancer patients. I don't know why I haven't gone yet, I just haven't.
Anyway, when I plan to tell someone something I always end up doing this super fast awkward talking and nervous bad joke laughing thing when the time comes to actually say it. This is not a side effect of cancer or chemo. I have done this my whole life. So I had spent all day trying to remember and plan to tell this massage person that I have a wig on so they don't rub my head too much or feel weird or whatever. No big deal to tell someone, right? Well this is what I ended up saying.....and I quote......
"HI!! (said super loudly) Not that I'm uncomfortable or that YOU would be but this is a wig (point to head)....from chemo...I get chemo...for cancer...but I'm fine really so don't feel bad.....so this is a wig (point to head again). Just so you don't like get...well up in the hairline (do an up in the hairline pantomime) or something and like....POP it off because THAT..hahahhahaha THAT would be funny and embarrassing...hahahahahahah her reply: "ok"
Good lord.
She starts the massage and I instantly feel like I'm going to start sobbing bawling again! It's gotta be my hormones mostly, right? I mean they are for sure being horribly toyed with. I'm not even down! I swear! I'm pretty normal feeling and happy but man this crying out of nowhere has to stop. It makes people sad and I'M not even sad! Just ready to be myself again physically I think.
Good news is I did NOT cry afterall. I worked through it and really really enjoyed the massage. I considered going back in with a fake moustache and hat on and saying "Exuse me madame...is zees ze place for ze free massage? Sign moi up!" but I had work to do and left my french disguise at home.
Humans are meant to have their poor sore muscles healed like that. We should all have free chair massages at least once a week. Maybe no more than that because they would lose their specialness, but let's make this happen. Put it in the new health care bill, Gobama!!!
Whoa. Topical humor. On a Wednesday. Now I've seen everything. Let's hope for tropical humor tomorrow.
Love, Crescent
PS - the irony that crying on stage was almost impossible for me when I was acting is not lost on me. Maybe I should start acting again. I would be the cryingist actress to grace the stage.
I was trying to fall asleep last night in bed, before Jason came in and I smelled like fire pit so I pretended that we lived on a lake. The cars were waves, the people talking on the street were actually night swimming on floating docks out in the water and the screen door opening and closing was Jason cleaning up the yard for the night. He was actually cleaning up the yard but in my mind it was a different yard that went right up to the water. I've done that my whole life. My mom said that some of my first words were "play like....". "Play like you are Danny Zucko and I'm Sandy." "Play like I'm kicking really high." "Play like this truck bed is my apartment." I'm always in a movie or a video or a book or living a different life but with the same people and maybe Paul Rudd thrown in for good measure. I think everyone does, right? It softens the sharp edges of life, at least for me. BUT, last night, it made me really sad and scared! I started feeling like I was going to cry about it! I was flooded with the passage of time and how much has changed around me and what is in store whether we want it to be or not...just LIFE man. The GIANT HEAVY gravity and reality and change and circles and intensity in ten cities that is LIFE! It snuck up on me. Keep in mind I have been doing GREAT! I swear they forgot to give me chemo drugs this round. It has been NEARLY a breeze. But still...I felt heartsick for some reason and pretending to be in my lake house and having no need for a job and no struggles was making it worse. So I got up and brought my pillow to special bed in the living room and said "J, I might stay out here with you for a little bit while I fall asleep if that's okay." and he simply said "I'm glad.", and we both fell asleep to the hockey game (Go Hawks!!!!) and I wasn't sad or scared at all.
That did it. My Jason. My lake, my screen door, my special bed with lots of pillows, my purring old cat next to me. Not only do I have what I need, but I have what I really want and what I've always wanted. Edges softened by reality? That's a new one.
What a joy to keep learning and pushing through. Not just with cancer because, let's face it, I'm doing super awesomely fantastic at that, but the everything else that goes on with or without you. It can emotionally cripple you for life or it can slap you square in the face then buy you the best noodle dinner money can buy, if you let it. The journey keeps talking and talking and sometimes what it says makes my blood run cold, but I'm finding if you stick it out and face it all, little by little you are rewarded with some peace. I don't know how or why that makes sense to me, but it does and I'm glad.
I'm doing okay! I had a couple rough nights with nausea and then some other stuff that's gross, but I feel like I can at least make it through this crazy busy day at work. Then the weekend. Ahhhhhh
I wish I had cooler stuff to say but just am almost crazy giddy about the fact that I'm not as down and out as last round. That might change but I'll take the good while I can get it!
That's what our best friend's little girl said when we came to meet her fresh born little sister...."Come and see something newborn!". Amen, sister, amen.
That baby was just what the doctor ordered. When Jason held her for the first time he got tears and said "this is the first really good thing to happen all year." We are just so fortunate that Anne and Matt share their family with us so readily. It really does mean the world to us.
Speaking of newborn, I'm working on some new meditation techniques and attitude adjustments. My meditations are designed to keep me from worry, because I tells ya that is the worst feeling. I hate worrying but I do it so often. Not just about the big C but about everyone and everything. So I'm working on breathing that away, when I can. Enjoying the moment, cliche' cliche, blah blah, but it's a true cliche' so there.
I am also working VERY hard on not going into my next treatment with dread in my heart and head. I think that just preps my bod for pain and sickness. Don't get me wrong.....I'm 99% sure I'm in for it with these last two treatments physically, but I'm going to try and win in the mental department this time. Focus on how far I've come, remember it won't last forever, embrace the time to rest when I have it....etc.
This is what is new with me and it feels pretty lovely as far as personal paths to peace go. Now I show pictures!!!! (said in my roid rage voice because it makes me laugh...but it's not for me to say how hilarious my funny voices are)
Here are some of my favorite people ever on Easter. Shout out to Megan the red head for gold star work in the friend department as well. She helps me feel normal and makes sure I laugh hysterically at least twice a week.
Here is Jason taking a nap in Elizabeth's new bed. She tucked him in and said "There ya go buddy!"
That's pretty much it. My fog has lifted both emotionally and physically. This weather makes it good to be alive. Short work week. Fun weekend plans. Best friend's baby on the way as I type. Good stuff, world. Thank you for it all!
I always enter my new docs info into my Outlook when I get their card and I was just doing that for my radiology dr. and realized that for all my doctors I put "Dr. so and so MC" instead of MD.
So apparantly all my doctors are also DJ's. Holla!!!!!!
