Just like every other time, I woke up late for the 6:30am Jitney to Manhattan for chemo. At 5:35a (thanks to the train whistle) I woke from a sound slumber with 25mins. or so to get the bus.
In a foggy morning panic, I gathered the laptop off my bed and packed it. Then, pushed Charlotte awake and got her out of bed. Ran downstairs to let her out. Ran back up stairs to brush my teeth, wash my face and splish splashed a bit of a whore's bath (as my nanny used to call it). Threw on some clothes, applied some mascara to my remaining eye lashes. Then ran back downstairs to let Charlotte back in. Gave her food and her little pill.
Then ran back up stairs to switch my bag and all my gear: laptop, daily journal, meds, tons of useless crap into my 'city' bag. Then ran back downstairs.. got my coat, gathered my things, and hopped into the car at 6:18a. Drove down the street and realized I don't have my wallet.
Turned the car around ran into the house.. searched my 'nofo' bag and looked for the coat I wore yesterday. Realized.. my coat, with my wallet in the pocket, is hanging on a hook at Love Lane Kitchen.
LLK is closed 'til 7a. I have no money.
Got in the car. Thought to myself I'll get on the bus. Worse comes to worse, I'll mail them a check or something. What are they gonna do ..kick me off the bus?
Then turned the car around again.. ran back into the house (6:22a) and grabbed my checkbook.
I was at the bus stop by 6:29a. Parked the car, and the bus pulled up. Now here I am, settled in my seat 6:56a. I've got my jitney muffin and water and I nervously await the awkward conversation with the young floppy haired kid who will come around and ask for my fare. They don't take checks I've just heard him say over the loud speaker. On the computer I've written down my cc #.. we'll see if that will work. If not. I might be doing the rest of this post from the side of the road at exit 50.
It's 7:26 and floppy haired boy took the cc #'s, without the actual card. I'm safely a paid customer of hampton jitney. Now I can eat my muffin, enjoy the ride and contemplate the hell that awaits for the next 2 weeks without another distraction. Bummer. Maybe we'll get a flat tire...fingers crossed.
to clarify ..they are not pajamas or tier two clothing as I like to refer to sweat pants. I put on jeans.
My consolation was.. there was no way I could deal with tying shoes... so as ugly as they may be, I wore my fleece crocs. sinfully ugly...yes. wonderfully comfortable..yes.
So I got dressed, went to work and held my head up for the entire day. There was a point when I when I thought I might pass out.. but I didn't. I remained up right, fully functioning, carrying on conversations and enjoying the entire day.
It's 7pm and I'm about to fall a sleep. I feel sooooo much better!
social media could be a very communicative way of leaving clues behind without being trite and writing the tear stained note.
tips n' tools to leaving a suicide note -the social media way. by jen lew
a tweet: RT @cobain #suicide
facebook status: I <3 painkillers ... bye bye
blog post: see ya losers
As a sign post on farmville: harvest my pumpkins fuckers..i've hung myself
delicious or digg: google wave..guess i'll miss it
kirtsy: girl commits suicide the social media way
the fucking fucked up shitass motherfucking prednisone is the cause of this intense mood shift, or it's lack of sleep, or pain, or eating poorly, or it's that i haven't gotten my period, or it's that i haven't had sex in forever or exercised... or ...or.
a friend told me a horrible story yesterday. the jist of the story is... someone had cancer and they shot themselves during chemo. i fucking get it. i don't plan on doing it. but jesus right now... i fucking get it.. i understand now in so many god damn ways how this fucking bullshit cancer motherfucker can fuck with your head. i have no intent on giving up. but i fucking get it.
i don't want a bunch of you idiots getting all worked up and thinking that i'm going to kill myself ..because i'm not. but the truth is.. at times over the past two days.. it's been enticing. enticing is a creepy word.. when referencing death. but you get my point.
yesterday i found myself asking Greg " wouldn't it be cool if you could get shot, live through it and then survive and be fine"? I was thinking about how shitty I feel. I thought it would be great to die for a little while. I also put a request to both Jenni and Kim to shoot me and get me out of my misery. They both declined.
But greg..being awesome.. said yes. No. I'm kidding...He turned my psychotic question into a conversation and we started talking about poor maryjo buttafuoco ..what a god damn story. That woman pulled herself up. Damn! Greg without knowing it, made me feel better for the rest of the day. If maryjo could get shot in the face ...publicly humilliated by her piece of shit husband ..and live to walk tall and get re-married.. jesus i can go through this shit.
today, tonight.. i'm alone. i'm in bed. everything is just fucking miserable. i've been crying for most of the day. there's nothing anyone can do or say to make me feel better. i am a self loathing, angry, motherfucker.
I feel shitty. my eyes are jittery. there are these little flashes of light..like fireworks that shoot into my eyes. they used to only happen before a migraine. now they are fairly constant. my eyes can't focus on anything. it literaly hurts to look at the computer screen but my head is wired..the fucking god damn prednisone. i'm wired and fatigued at the same time. i can't sit still and the light from the tv hurts so i don't know what the hell to do..so i'm banging away at this fucking keyboard trying to write down all this god damn fucking fucked up shit going through my head. i'm frightened by what i type..but yet i can't stop.
once again ..another night with the laptop on my lap in a dark room waiting for this shit to pass over me, so i can wake up, walk outside and pretend i'm ok with it all.
i'm sweating. the back of my neck is permanently moist.
the front of my brain hurts..like it's being squeezed.
my arms hurt
my fingers hurt
my teeth hurt
my legs hurt
my throat hurts. i sound like a strangled frog.
i can't keep my eyes open when I talk. it's like the two can't work at the same time.
i don't think i can do this again. i don't understand how i can do this again. knowing how this is going to make me feel. how can i go into that god damn hospital let them inject me with all this shit. then take these stupid fucking pills for days. then come down off of all this shit. my body does not like it. some people might be able to handle it..but obviously i can't.
i'm getting pissed. angry. upset. frustrated. i can't imagine if i had to go through this and the oncologist said it wasn't working... how do people do it.
finally i understand the true word SURVIVOR. i didn't understand why I got a survivor t-shirt at the LTN walk. I thought to myself.. "i'm not a survivor.. i'm still in battle.. this war isn't over ..how could i be considered a survivor"?
today i realized it's not the battle of living, you are necessarily a survivor of. It's this gut wrenching, mind blowing, fucked up journey that i'm a survivor of. i'm surviving today.
i survived my first real break down today.. crying like a baby rocking myself to sleep. crying about everything. i took ambien in the middle of the day just to stop myself from crying.
most of all i'm crying about how in the fuck am i going to go through this two more times... and for god sakes.. is it really only 2 more times? i don't know. i hear from all these fucking stupid idiot people "i know so and so who's been in remission for 5 years.. 8 years ... 10 years" fucking great fuck wad. remission from what? what type of cancer did they have? what type of lymphoma?
i mean really.. how fucking dumb can you be to say.. "my friend had cancer... she's fine now.. so you will be too".
shut the fuck up ...idiot.
so.... remission. it lasts for a few years then what? you go through this shit again. jesus now that's a something to look forward to.
i know these feelings will pass. i know i'll feel better in a few days. i know i'll stop stuffing my face with food. i know i'll have sex again. i know i'll laugh, have fun, drink a jameson on the rocks, make plans and keep them, go someplace besides home, work, LLK and Sloan, I know someday soon I'll get dressed up and feel really, really good and have a great time. someday soon I'll need hair gel.
i can't wait to say... yeah.. cancer/chemo happened .. now I....
so i'm not going to kill myself idiots.. i just have no other god damn way of expressing how motherfucking awful i feel.
Ok, while I've just blogged about the Medicine. I am up from another sleepless night and have to get this monstrous fear off my chest. And thanks to you beautiful people reading my blog... I get to dump my fears, joys, gratitude and love onto you at will. So.. here you go people take on my burden for a few minutes. Another post of some heavy shit.
I have to take my prednisone this morning. As I've mentioned ..I've been up for hours..since about 2:45a and it's 6a now. I've been dreading taking it since the first glimmer of being awake.
I'm hungry.. and all I can think about is what I should eat with the prednisone. It tastes bad.. I've mentioned that before.. but it also ruins the flavor of everything else I eat. So the food, the timing and the will power to take the pill all have to be right. Millions of people take this drug.. I know. I am a wimp and being very dramatic about it. I know. I know.
But still ... I want to stamp my feet on the floor and pierce my lips together and refuse to take it.
I am however the one forcing myself to take it... so these attempts at a temper tantrum will be waisted ..unless I video tape it. Ok I'm just procrastinating now.
About a year ago, a friend said she was going on low dose prednisone for her RA. I lost it on her. I have a tendency to get a little passionate and after about 10 mins. of a tirade with me trying to convince her not to be on it.. I looked at her and said.. "oh..I think that's a little displaced.. I blame prednisone for my dad's death" She smiled and said that was different, she wasn't frightened of the stuff at all.. had been on low doses previously and while it was a bit uncomfortable she thinks the medicine works. So I shut up.
I blame the prednisone for my dad's death. It was the prednisone that made him impossible to sew up after surgery. I know this because standing in the hallway of Mt. Sinai after my dad's major colon/bladder/prostate removal.. the surgeon exhausted after hours of intense surgery held up his hands up in the air and said.. "I'm sorry ... the surgery went well..but sewing him up was like sewing up Jell-O... that damn prednisone".
The surgeon my dad loved, walked onto the elevator looking defeated. In all of his despair I new the outlook was shitty.
It's a moment I'll never forget.
Now it's me.. taking 100mg of this crazy crap that makes me irritable, jumpy, jittery, fatigued, constipated, weak, sweaty and constantly on the verge of a migraine. I only take it for 5 days.. for 6 months. It's only 5 days..I should be able to deal with it. But it's after the 5 days of coming down off of it that extend the experience So ..it's 10 days of gross hell. .. I hate it.
It doesn't compare to the almost 8 or so years my dad was on/off it. But I can't help but worry that it won't be me turning to mush inside.
The stuff frightens me, all I think about it is that I'm rotting like a pumpkin in November.
mmmm pumpkin. I'm getting pumpkin pancakes at LLK and throwing a temper tantrum there..least I could do is let my friends watch me make an ass of myself.
If there's video I'll post it later.
It's been day's since I've found out that the chemo is working and killing those nasty little cancer cells. It's good news.. no doubt..very good news. I'm happy..happy doesn't even cover it.
So, I've been left wondering why I haven't hooped and hollered and blogged about this exciting turn of events. Even my mom, in her ever so insightful and subtle way asked me the other day "is there something wrong with the blogs?"
"Yes, mom the blogs are broken .. all of them and the internets". I said. In the lovely tone a forty one year old woman who still acts like she's 14 to the most supportive person in her life... should not muster.
What she meant to say is.."I haven't seen you post anything about your good news". And of course she was right.. it was weird I hadn't blogged about the good news. I'm open and blogging about everything else from poop to heart burn. So what's been the delay?!
It's taken me day's to realize.
I was resentful when the Oncologist told me "the chemo is working" and he reminded me that he thought there was a fantastic chance the chemo could work in the first place. Resentful because I've had a hard time associating all this shit pumped into my body (Chemo and Prednisone) and all it has done to my body, brain, and life for the past few months... as a good thing.
Or as my friends and family have to constantly remind me ..that this shit is MEDICINE it's helping me.
I resent the fact that it's not the cancer making me feel crappy ...it's the medicine. I didn't feel 'sick' before I was diagnosed?! I haven't felt proof that the cancer would kill me. How do I know for sure the lymphoma would kill me? No really? Is this just a ploy to keep my Oncologist in his Gucci loafers?
As I type this, I don't completely believe my own conspiracy theory hooey. But it's a thought that won't leave my head.
I've googled ..I know follicular lymphoma would cause my blood cells to not regenerate and ultimately my support system would break down...yada yada. But I can't help but wonder.. how long would I have.. and what kind of life would I live without this medicine that's making me feel so crappy today, making me miss important events, fun, work, life and potentially causing so much other destruction in the future.
I trust my oncologist... Why would there be a diagnosis and mental and physical pain without the best intent.. but ...There is a but. I can't help it. Lymphoma vs. Medicine. The waging battle in my mind.
Everyone say's this is a 'good cancer to get'. Even on the show Brothers & Sisters Kitty's Oncologist is optimistic but concerned. Kitty even opts for my same treatment..R-CHOP. If you know me, you know I love tv...so sadly, truthfully ...this is comforting.
Outlook is good... at a 50/50 success rate. It's all so confusing to go through this painful, uncomfortable journey without ever a crash, fall, emergency room...climactic cause..for all this effect.
So.. if the medicine is working and the cancer is diminishing it's all a good thing. I know this. I have two more treatments. 2 more months of hairless, jittery, fatigued, gut wrenching, sweaty misery. Then what.. I'm back to normal. All systems go. Clean yourself up, live and move on... forgetaboutit. That's what I've been saying. That's been the plan. Dust yourself off kid-o, this is just a blip on the radar of a long happy life.
I don't know what's in store over the years and I'm appreciating the fabulous care I'm getting from my well dressed, intelligent oncologist and settling into my confusion. So I'm happy.. no...joyful, ecstatic, giddy the chemo is working. I'm ready to move on face whatever comes or knock wood..doesn't come.
But believe me you ...cancer bitch. I'm hip to your wiley ways and if you so much as alter a node or decrease a hemoglobin count. I'm snapping out of this medicine is bad funk and kicking your ass with another round like Tony Montana in the last scene of Scarface.
Medicine. it's some Heavy Shit. But click your heels people this medicine is working.
I'm asked all the time .."how do you feel" or "how does the chemo make you feel" and the answer is.. "do you mean at this very moment" because it all depends on the week, the hour or the minute. Today I feel great, clear headed, full of energy and normal. Tomorrow I get chemo so for the next 2 1/2 weeks or so I'll feel like hell.
Here are the various stages of that hell.
stage 1 - coma
stage 2 - woozy moaning misery
stage 3 - death where are you?
stage 4 - the hangover
stage 5 - normal with a twinge of puppy
stage 6 - uh what.. me cancer?
1 - Coma
Everyone's reactions to chemo are different. I was told that the day after chemo I'd feel good and be able to go to work. Yeah..not so much. I sleep. I barely lift my head. I sleep the entire day.I'm a bit nauseous but the drugs work to combat that.
2 - Woozy moaning misery
I'm a moaner. (i'll leave that open for interpretation and pray that nobody leaves embarrassing comments) I moan a lot during stage 2. I'm miserable I can't breathe, I can't stand up without feeling dizzy. My equilibrium is off and I am fatigued. I get up I try to complete sentences and then I lie down. I'm woozy, not so conscience, my mouth,teeth, hands, arms, feet, legs, knees all hurt... I breathe heavy when I do anything and I moan.
3 - Death where are you?
This stage is new. My first foray into stage 3 was after the last round of chemo.
For about 4 days or more, I felt at certain points during the day that my body was literally eating itself. I don't poop. I am miserable. My hands shake. My body is jittery but the fatigue weigh's heavy. My heart beats like pepe le pew falling in love...if I was a cartoon you'd see it beating out of my chest. I dream of slipping in the tub banging my head a bit too hard and drifting away into a peaceful slumber. So be it.. for these few days that would be better than lying curled up in the fetal position trying to figure out how to turn myself inside out and walk through a car wash to clean the evil drugs out of my system.
4 - The Hangover
The easiest way to explain coming down after those days of hell and wanting to slip in the tub. I feel hungover. That morning after, slow moving, lingering stupidity and inability to process information. That shear pain of existence feeling combined with the knowledge that your brain cells are irreparable but knowing that even though you feel this way ... at some point sooner than later...you will be going back and making yourself feel this way again. The bummer is.. this medically induced hangover is completely void of any fun whatsoever. I much prefer a whiskey, beer, wine or tequilla hangover any day.
5 - Normal with a twinge of puppy.
Feeling normal begins at the tail-end of the hangover stage when I can lift my head, walk outside without my sunglasses and hold a decent conversation.. but after a short while I need to take a nap. I am fully functioning at this point, I have a hard time waking up in the morning and I usually hit the wall and go to bed around 5:30p. I work a full day, hangout with friends then pass out like a puppy.
6 - uh what.. me cancer?
Really, I have cancer but I'm feeling great, full of energy. Nothing can bring me down.. oh wait.. I have chemo tomorrow and then I repeat the whole cycle over again. Hopefully no knew symptoms, side effects or stages will be added to the mix.
How cool. Because of my awesome friends and family I raised over $5000 for the Leukemia Lymphoma Society and was the highest fundraiser at the Light the Night event.
I was invited to speak at the event last night.. I had no idea what I was going to say but wanted to emphasize that this cancer crap doesn't define me.. hopefully I got that point across.
After the event and the walk, my team and I went to Love Lane Kitchen for a delicious and fun dinner. It was a great night..
THANK YOU! THANK YOU! THANK YOU! THANK YOU! to everyone who donated and came out to support me.
Lots of love man.. lot's of love.
Great stuff has been happening in between feeling like crap... fatigue has impaired my ability to muster up sentences and blog. So here's a brief recap.
September 26, A gaseously good time with Climie. Deborah Climie that is, she came to visit for the weekend. I felt like crap and she was exhausted from work. We hung out on my couch, with our laptops, watched stupid tv and napped. On Sunday we ventured out for a fantastic lunch at North Fork Table & Inn... but I ruined the meal by spending a lot time in the bathroom and well I've shared quite a bit on this here blog.. so I'm just going to say it ...I was gassy. I was in pain and I needed to fart. I was so gassy and my stomach hurt so bad, I couldn't eat either of the two desserts at the table. I couldn't eat dessert.. that's how much pain I was in...all because of a fart. We left the restaurant in a bit of a panic, with Deborah almost carrying me to the car. I thought maybe I was having a heart attack. Finally I passed wind, it was my farewell as Deborah got out of the car to get onto the jitney. As a true friend she said congratulations and didn't make me feel embarrassed for the stink.
September 28, Kris Cardosi flew in from California. She only visited for a couple of days (not nearly enough) and already I miss her. One of my oldest and dearest friends, the girl knows me well.We have a history like sisters. Sweetly, Kris subtly tried to convince me to watch my diet and brought me tons of Ayurvedic herbs to help heal my decaying body. We talked for 3 days and drove around the North Fork. In the evening we sat on my bed ate dinner and watched multiple episodes of Mad Men. During her short stay, I had a work crisis,we had no hot water-the water heater blew, the bathroom faucet wouldn't turn off and my car battery died. None of it interrupted our endless talks.. and I wish she lived around the corner.
Oct. 2 I'm tired. Real tired. Crampy miserable fatigue tired.
October 3, Lew Family Reunion in Litchfield, CT. I love being a passenger in a car. There's just nothing nicer than going for a drive and looking out the window. Fall leaves changing ..ferry ride and my dog by my side. I love Litchfield and it was great to spend time with my cousins and hangout with everyone.I had booked a hotel room, but it was nasty. So I stayed at my cousins and shared a room with the adorable and brilliant Claire Carroll. She is 4 and will do great things. This I am sure!
The week ahead.
October 5, CT and PET Scans at Sloan
October 7, Oncologist and Results.. Oy!
October 8, LLS light the night walk
October 10, Chemo
October 11 - 15 prednisone hell
October 14, Emma Block Live at the Bitter End
October 15 - 29 ugh. work. sleep. repeat.
a north fork living. matchbox making. social media addicted. reformed city dwelling. x feature film producing. lover of all things creative and witty...and a cancer having, follicular lymphoma battling scardy-cat.
