Thursday, February 18, 2010

The Universe is talking.

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

Tuesday, February 16, 2010

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:

Monday, February 15, 2010

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.

Wednesday, February 10, 2010

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 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 okay. Nothing I can't tackle with the love and help of my family and friends.

Friday, February 05, 2010

What's the buzz!?

Done! It feels so great to be past the worry of the shave. It really went well and I feel great. Now just have to get through five more treatments and I'm out of the scariest part of the woods.

I'm wigging it up at work today.

Wednesday, February 03, 2010

sorry...I'm back

I have more to say. I think what I woke up with today was more of that realization of the roller coaster that my sister mentioned that one time. It's just SO up and down. I can hardly keep up. Yesterday I was so happy and relaxed and loved my new hair style and felt so empowered and strong. I woke up feeling the same until I went to run some pomade through my awesome new "do" and looked down and got a GIANT handful of reminder that I have a ways to go with all of this. It wasn't that bad. I don't feel like I'm a big mess or anything, but as the day goes on it just keeps hitting me that this is going to happen in real time. Not some movie montage of me, bald and plowing through treatments and emotions and recovery in the time it takes for an Andrew Bird song to play. I want it to just be May but that's not the way science and time work, nor should it. I don't REALLY want that either. I know this is important stuff I'm going through and I need to be present and aware and learn all I can. I'm just exhausted from trying to work through it all. IT really hasn't been that bad of an experience but sometimes I'm so tired of having it in the front of my mind at all times that I want to roundhouse a wall or something. But then that voice that says "this could be SO much scarier!" pops into my head and I say "i know...I know...I KNOW!" but still....the feelings can be tiresome. Healthy yes. But tiresome.

And the pressure to be changed and new and doing something important with my future when all I really want to do is drink wine and sleep and maybe do some laughing in between. But I'll get there. I know I will.

me me me me me....that's the other part I hate lately. I feel so self centered, but I guess I get to be with all this.

Okay. Just had a few toxins to get out. I feel better...thanks blog.

My montage song.

That's's come to this......

I'm posting a Wilco song to explain where my feeeeeeeelings are today. I can do what I want! (runs into room and slams door and turns rock and roll music up too loud!!!!)

Besides, today is the first day I've been able to listen to my iPod in months. It's been working but the songs that come up just seem too hard to hear. Today I'm trying to get over that and let the music be more healing and calming. It's mostly working. If a song starts making me sad I just skip it.

Maybe the sun will shine today
The clouds will blow away
Maybe I won’t feel so afraid
I will try to understand
Either way

My jam today.

Tuesday, February 02, 2010

Okay so not a total shave off yet.....BUT

I love it too. I feel totally free and great about myself. Monique was a great advisor and did such a nice job making me feel comfortable.

A bunch of my closest friends came over and we drank wine and laughed and cried and then went out for dinner.

I feel good about the decision not to totally shave yet. This gives me time to get used to the short cut and feels way less dramatic to picture it shaved now.

So all is well. Another little mini-hurdle tackled. Plus I love the snow.

Monday, February 01, 2010


it's just's just's just hair. It will grow back. Jason loves me no matter what. I have friends and family at every turn. I have two great wigs thanks to those friends and family.

Still feel like if I didn't have to work I could EASILY cry for eight hours. Thankfully I DO have to work. I keep trying to figure out if this is the worst part. I don't think it is, but I'm not sure. It's certainly the part of right now that feels the worst. But I know I'm doing the right thing by the big shave. I'm pulling out tons of hair at work and it's freaky, man. FREAKY. I don't want that to happen any more. I just want to be to the "dealing with it" phase. And I will be by 7pm tonight. Usually when something feels this scary it ends up being not even close to as scary as I thought.

So here's hoping my head isn't shaped like my thumbs.