And Where Is The Body?

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.

Play like.....

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.

hey!

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!

Love,
C

something newborn

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!"

oh sooooooooo much better.

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!

hahahahahah

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!!!!!!

I am Lobo!

watch the trailer. hahahahah I am THE GUTE!!!!!

shell shocked.

Man. That was not fun at ALL! It took me until about 11:00 today to even come close to feeling like myself and I'm still not there. I wasn't expecting such an intense time.

I could recap day by day but we don't need to take a day trip to Snooze County. It was just a really bad few days. I've had TWO bad days before but not 5 in a row. Low grade up and down fever from about Wednesday night until Saturday late. Had another one of those 4:00 am "is this what dying feels like?" moments on Friday. That is a terribly selfish thing to say because I am CERTAIN my fever and aches are no comparison to the pain and fear millions of people go through daily, but when you are on meds, scared, tired and sick it's hard not to think a little on the dark side. (Just had a lovely vision of Hixx singing On the Dark Side at karaoke years ago...that made me smile).

Jason was very nervous every time I would sit up in bed and groan and then take my temp. I've come to learn that he really fears and hates fevers. I know he was gearing up for an ER trip every time that stupid thermom was in my mouth. The thing is they say don't come in if fever is under 100 but the minute it hits 101 get your butt into the ER so it's these crazy Vegas style odds but not as fun and glittery and CERTAINLY no roller coasters or pools in wacky shapes. So that thermometer became my enemy and best friend all at once. I still can hear its stupid beeping in my head. It's like NAM!!!!!! hahaha it's not like Nam.

I would lay on the futon (special sick time bed) and email my dad from my phone with almost hourly updates. Not telling him or Jason how bad I was feeling would have saved them both some stress but it felt dangerous to lie or play it down.

So then on Saturday the fever started to go down a smidge and then the bone pain started in every inch of my body and I lost it. Matt and Anne and Elizabeth were on their way over to check on us and say hi and about 2 minutes before they got there I lost my mind and started bawling on Jason. Like a crazy person. All of a sudden HAD to have my wig on even though everyone has seen me without it. And I just cried and cried and RIGHT then the doorbell rang so I ran into the bathroom to try and get it together. I was trying to put on make up but couldn't because my eyes were just squirting water. And they truly looked crazy to me. I'm sure that was the meds but I wanted to get that down on blog paper because it was such an odd moment with myself, alone. My friend Megan had a nightmare once that she was crying so hard that her pupils broke and started leaking black down her face. Of course that didn't happen but it looked like it was about to. Plus I've gained so much face weight from the steroids and non-activity and blech...it was just not me for five terrifying seconds.

I put on my wig and some lipstick and just kind of gave up. Jason and Matt gave Anne and me some time to talk. And in usual Anne form she knew what to do and say. I spilt some beans, like the fact that I have two treatments left gives me zero comfort after this last treatment. I know it's great and almost done but in my head and heart I feel like "What???? I HAVE TWO TREATMENTS LEFT STILL?????". But that will ease and pass I think. Like I said, just a little shaken but not broken or anything.

It will all get done, and in my calmer moments I feel that peace and believe it.

Saturday....not so much.

Everyone did just what their sweet hearts always do....patted my back, held my hand, hugged me, cooked for me, reminded me to take my meds and rest and not push it....so once again I was very much "love bubbled". Thank God. I kept thinking of that woman I met in chemo with stage four bone cancer talking about how she takes a PACE bus to and from her treatments. Who pats her back? Who makes her chicken on the grill? Breaks my heart a million times to think the answer is no one. Hopefully I'm just being dramatic and it's not the answer for her.

SO there you go. DRAMA!!!!!!! But I had to get it all out. Good with the bad and so forth.

I've been thinking a lot of old movies that are terrible but that I love and I keep wanting to find a DVD version of Don't Tell Her It's Me (also released under the name Boyfriend School) starring the Gute and Buffy from Square Pegs. It's about a guy who gets cancer and has chemo and then gets all hot and tan and buff afterwards and pretends to be from New Zealand and learns to ride a motorcycle (roadercycle as Jason now calls them). It makes me feel better to think maybe I can do the same. Not the motorcycle part but that I can get better again like Steve Guttenburg. And I might be able to fake a New Zealand accent for a bit. Who knows. Just have to get there.

blargh

Not such a good round. The treatment went fine and we love our nurse, Isabelle, more and more. She is so gentle and sweet but no holds barred too. Love her. I'm on a hug hello program with my fellowship oncologist and a hug good-bye program with Isabelle. You know how much that means to me. Because you know I watch and not EVERYONE gets hugs. I'm just saying is all......:)

I made friends with a woman named Linda who sat next to me. She was very ill but wanted to chat so we did. She had breast cancer years ago and then due to some kind of other illness (I think she said a blood disease) her cancer came back in her bones and liver. Stage 4. Heartbreaking but what a spirit and heart. She was saying that sometimes she gets so mad she has to throw things. I told her I threw a binder and a shoe during my cancer ride and she thought that was pretty funny.

So the day of was great, but I could tell the minute I got home that I wasn't doing so hot. Just exhausted to the point of not being able to move. And that has not cleared up yet. Dr. Shell said that as I get through this last half of treatments I will find that I don't bounce back as quickly so it's normal, but is hard. I hate being behind at work and I hate sleeping all day and night but never really feeling better.

BUT only two more of the really bad buggers left. Then just the one bag until January and that won't take my hair or energy. The only side effect of that drug is high blood pressure and bloody nose. I will take both over how I feel right now any day of the week.

So just checking in. Feeling okay emotionally, just craptacular physically.

I am still in awe, everyday, of my friends and family. The calls, the check ins, the cards, the gifts, the emails, the facebook posts....just nothing but love. It sure does help.

I think this is all taking a toll on Jason too, how could it not? He does such a great job of taking care of me but forgets about himself I think. He could probably use a good week in bed too, poor guy.

Ah well....such is the adventure.

Love and kittens,
Crescent

Protégé

My dear friend, Heather has decided to give ancient art of rubber ball banding a try! Go Heather!!!!!

Let's all support her efforts as her rubber band ball grows.

Springy.

This weather is the KNEES, man! I love it!

Although it gives me crazy baby fever and I just can't have that right now. I just looked at baby names for twenty minutes. Why would I do that to myself? All of a sudden I realized that is just not something I can daydream about right now because when I snap out of it my heart and insides feel like someone has tarred and feathered them without the feathers. I know it's good to be hopeful but I don't think I even have room for that right now. I am going to just try very hard not to cry about it and to just enjoy all the other babies I get to know.

Other than THAT I really am doing great today! I feel good and besides a crazy bad nose bleed that would've made George Romero faint this day has rocked so far.

And as usual, purging a little after my baby name binge has helped sort my brain out.

Nightmare!

Speaking of dreams....last night I had a bunch of bad ones, like one where I got my chemo treatment but they forgot the Benadryl in my vein beforehand so I started having a seizure and my boss wanted me to work anyway.

But by far.....the worst dream of the night....I dreamed I got to work and my rubber band ball fell apart in my hands. Needless to say I nearly kissed it when I got to work and it was sturdy and glorius as ever. I even gave it a good couple bounces on the floor just to make sure.

Best. Present. Ever.

Remember Top Cops? Here's the blog entry about it if you don't, but honestly...how could you forget?

The Dream: Jim Carey and John Candy! It was called Cop Tops and I gotta tell you it was hilarious. In one scene they had broken into a suspect's house who also happened to be some kind of scientist that made poisons and stuff. Jim Carey was the goofier one and he grabbed what looked like a grape slushie from the fridge and started drinking it. They were tip-toeing through this tiny hall way when John Candy turned around and saw what Jim (I call him Jim now) was drinking and started yelling at him and hitting him quietly with his hat then goes "is it good?" and Jim goes "yeah you want some?" and Candy goes "yeah just pour a little in my mouth." hahahahahahah I mean you had to see it but it was so funny to me. It was great comic dream timing I have to say. What a team they made. Sigh.

Look what my friend Mickey did.



Am.az.ing.

This, litteraly, made my week. I was JUST telling Jason that I think what needs to come out of all this is me being on TV or something. This is getting me closer!

IMPORTANT NEWS!

My rubber band ball is really getting big! I started it in October. My goal is for it to match my head size. I really am starting to think I can achieve this!

Dream big, my friends. If it is to be...it is up to me. Remember this.

Kittens,
Crescent

a powerful thought

I just had a moment, while writing to my Dad, of total and complete awareness for how much I love the hand I was dealt in life. Yes, this year kind of sucks, but I just got totally overwhelmed with the people....so many people that love me and MAN do I love them back.

Anyway, just wanted to say that to the universe.

"thank you for my life.....I forgot how BIG....." Joe in Joe vs. the Volcano

Round 3

Look we winter grilled last night. We are trying to force the spring issue in the Prah family.

Great weekend. Had tons of fun with my brother-in-law, Jeffrey. He goes by Jeff but I like calling him Jeffrey. Makes me feel like a big sister.

AND I got to spend my Saturday with one of my oldest and dearest friends, Julie. We have been best friends since about 1985. 1985!!!! That's nuts. She's an inspiration and a blast to be around. I wish she still lived up the street.

So yeah...tomorrow is treatment three. I would be lying like a rug if I said I wasn't totally nervous about it after the last time. But I think they have it figured out so I won't have the reaction again, and regardless they are giving me more sedatives in my drip so I have a feeling my nerves will be gone pretty quickly.

The funny thing is that I have started looking forward to my treatment days ONLY because Jason and I get a whole day together just the two of us. It's twisted but true. I like that we have our little traditions like stopping at Starbucks for coffees and bagels. That we listen to upbeat classic rock, usually, on the drive so things don't feel too heavy. That we pack my pink backpack with movies and our DVD player and granola bars the night before. I'm like my dad that way though, I enjoy a good hunker down. I used to be able to see the sheer joy in my dad's eyes when there was a tornado warning and we were all home. He'd get the TV all set up in the basement and we'd have iced tea or something....it just became cozy and fun somehow. Even though it was...you know...A TORNADO WARNING!

It's not a bad way to get through stuff though. Hunker down with people you love and watch some DVDs until the storm passes.

The Universe is talking.

LOOK! My chips are fresh until my last chemo treatment date!

in my genes

I purchased jeans that are paint splattered. On purpose. Online. Did that come back when I was napping? I'm keeping them. I'll wear them while I uh...paint? My secret truth is that I sort of hope that look IS back. I used to be very into paint splat. I had the coolest hat ever. I wish I had that right now. HELL if it isn't back in style I'm BRINGING IT back into style!

these are they. (BAM! enjoy that classy grammar, my friends!)



I think I'll put them on tonight and dance to this jam:

Baby Birds and Opening Ceremonies.

So there it is. My totally bald head. I'm not posting the pic to shock or get sympathy. I'm posting it because when I was still with hair I looked online for every pic I could find of a woman in my situation. It made me feel strong about it and continues to give me the right attitude. So many women and men in the same boat all over the world. Nothing to feel lonely about. Nothing to feel ugly about. I could cry about it daily but why? It's my head. Nothing to be ashamed of. It has a few fuzzies on it which is why, when I took off my wig yesterday in front of Jason and almost started crying he swept in and started kissing my head and saying "You are my little baby bird!!! CRESCENT! LOOK how cute you are! You are my baby bird!" (it should be noted that Jason LOVES baby birds on AFV. Loves them.) over and over until I was laughing so hard I forgot that I was upset. That is the best kind of laughing. I just did again reading an email from Matty (hi Matt). Laughing is the KEY to survival and feels fantastic when you are hurting. That is so cliche' and would annoy me if someone else said it, but it's just true, so there.

My dad was telling me about this Wanda Sykes routine on the phone yesterday and I was laughing so hard that I felt like he might be able to be her stand in next time she tours. It felt so good to ha ha ha that truly and deeply.

The weekend was great but hard. Friday night at the last minute we decided to just dose me up with meds and walk to a nice dinner spot by us (Chalkboard....we've been before but it was better than ever....go there). We had a really really fun time. Jason was in rare form and just super fun conversation and we really did it up with food. He kept saying things like pate'and short ribs were good for me because of the iron. I didn't argue. AND I had tuna steak for the first time and loved it!

Anyway, we got home and it was almost like the universe just GAVE us that dinner time to enjoy because almost the second we walked in the pain started. In my knees and teeth and hands and skull and feet and hips and everywhere. Just waves of aches and seers and pain. I took more meds and J put on the Opening Ceremonies. I was passed out in about 5 minutes then woke up to a surreal feeling of twilight and pain everywhere and Joni Mitchell making me cry. It was nuts. I was sure something was really wrong with me. Well more wrong than chemo for breast cancer. hahahahahhahahah...ahem....*awkward cough*....ha?

Anyway, that Joni Mitchell song got into my dreams and head in a major way. I sort of woke up and kind of sleep facebooked about it. I thought my mom was singing it to me at one point then when I realized she wasn't I felt total despair. It was just awful. It was the meds (Vicodin is a hellofa drug) and the pain but it made me feel totally terrified. I'm telling all this because, as I told my sister Jacy, if I don't share the few really dark times then people may not trust me when I say I'm okay, which I mostly am. Plus Jacy said it was a good idea to get all this down. I agree.

Friday night got worse as I tried to sleep. The joint pain is unlike anything I've ever had. And I'm not a big headache person so I was sure my skull was exploding. And the night sweats. Those are fun. And when I was out I dreamt of earthquakes and saying good-bye to family and knowing the end of the world was minutes away....uplifting stuff like that. I kept waking Jason up by accident by either making that air sucking in sound with a surge of pain or by having a crazy night terror where I would holler myself awake. He just kept saying over and over "what can I do? Is there anything I can do?" and short of make the sun come up there really wasn't anything. But I'm glad he was there. I finally just got up at 5 and watched movies and took more meds and by sun up the pain started to ease a bit.

We went to breakfast at the next door diner and then made a jaunt to CVS for "fun beverages". Not booze. Sodas and juices and Gatorades. Jason and I are big lovers of special drinks like that. The nurses all say that you need to get a walk in every day even when you feel your worst and it really did help. The bright sunshine, the fresh air and Jason making me laugh did wonders. So Saturday I was exhausted but better. Jason would put in a movie and I would instantly feel myself drifting off so I think he watched a lot of movies while I slept. But again....just having him there was exactly what I needed.

Yesterday I was tired but much better. We made plans to get lunch at Gannon's as usual. For some reason I didn't cry all weekend until yesterday a.m. And it was for no reason. It just started as I was talking to Jason and then I got a nose bleed and then I just kept crying for a few minutes. I think it was an emotional release from the weird Friday night. Not to mention I'm sure my poor hormones are trying to figure this all out too.

Jason and I had a great Valentine's Day. Maybe the best ever because we have each other. We played Guitar Hero before bed and I wore my Stevie Ray Vaughn head scarf. He beat me but not by much. (at Guitar Hero...he's holding off on my regular beatings since I have cancer right now. I'm sure they'll start back up in May.)

My other favorite V day story with Jason was when we were in college. I call it our Gift of the Magi Valentine's day although I think that's the wrong story. Anyway, I surprised him with a giant dinner at The Hot Fish Shop (don't laugh...that place ruled) and then when we got back to my apartment he had surprised me with a giant cheese and sausage tray (even then he knew the way to my heart) and a classical piano tape (yes...tape). I ate the cheese and sausage even after the giant dinner because I didn't want his feelings to be hurt and we both totally crashed feet to feet on the sofa to the relaxing tunes of the classical piano and woke up the next day in the same position. Jason and Crescent have been romancin it up since the early 90s, yo.

Happy Valentine's Day to all and to all a good night and God bless us, everyone and plant a tree!

PS - this is the version of Both Sides Now I THOUGHT I was hearing in my old room on Green Avenue. My mom used to play this Judy Collins record and sing along. I was sure it was my mom and Judy at one point. Lost style time travel maybe? That would be a very cool super power to come out of all of this.

Quite a day at the hospital! Everything was going great and I was in high spirits when bam! Anaphylactic shock! I guess because they took me off one type of steroids and the drip was a little faster is why it happened. It was terrifying though. For me and for Jason. We had just put in a movie (Taking Woodstock....Jason loved it but I hardly remember it) when I was totally overcome with the need to barf. I didn't but called out to the nurses "I'm going to throw up I think!" and Jason jumped up and they ran over and then my chest closed up and I couldn't breath. THEN according to Jason and the nurses my face turned so red it was almost purple. They took me off the drip and got my oncologist in there asap. She had them flush me out with saline and then add some lorazapan to the mix (heaven) and more Benadryl (double heaven). I then came around and was okay but very doped up.

So they had to wait almost an hour to try the meds again so the day went from a 4.5 hour day to an 8.5 hour day. But we made it. Jason was so scared but so great. He has been in power nurse mode ever since. Taking my temp....asking me detailed questions about my stomach happenings....patting my knee and telling me he loves me a lot. Good stuff. I feel safe under his care, that's for sure.

I'm back at work today and feeling okay. My mouth is already acting up but that's part of the drill. Otherwise feeling pretty sharp all things considered.

I took this pic of the escalator to the cafeteria again but going UP this time to remind me how far I've come. Only four more treatments of the rough stuff. Then only six more of the easy stuff. Then radiation...no sweat. Then hormone blockers....will deal with those.



Here was our great view of the storm from my chemo chair yesterday.



This was taken before the allergic reaction from hell but still sums up my basic feelings on it all. So far....so okay. Nothing I can't tackle with the love and help of my family and friends.