Me and My Arrow

Well hello. Been awhile. Though I have been writing many of these blog posts in my head, they often seem too scattered to be even remotely organized on paper. And a bit too dark and depressing. I sometimes struggle to even get through full thoughts in my head without breaking into tears, and the ones that I get out, verbally, to those I am closest to, they too come with tears and sobs.

See, over the last few months I have been trying to accept that my time on this earth is not long. Not a single person with stage 4b inoperable colon cancer gets cured through systematic chemotherapy. The chemotherapy gives you time. Well, it gives me time. It gives you more time, with me, to hang out on the couch and watch bad tv. There. But that's it. And so I have lost the ability to think beyond my next couple of years, because it just is too painful to imagine a life you probably won't get to have. So I do okay, day to day. trip to trip, jumping out of planes, driving half way across the country with my dude and my dog, getting wasted on bourbon with my dad in Michigan, exploring big, cool empty buildings in vermont in the middle of the night. Watching "The Wire" on HBO. Watching Baseball. Watching fireflies, they never get old to me being from the west coast and all. And I do okay. I do.

But then something will get in there. Out of nowhere, unexpectedly, and I lose it, I become so filled with sadness and anger and fear. It's like nothing I would ever wish for any of you, my lovelies.

Most recently it was the song "Me and My Arrow" by Harry Nilsson. Skip this part if you don't want this song ruined for you. For those of you that don't know it, it's about a dude and his dog, and a girl leaving him but who the hell cares, cause he's got his dog...

"Me and my arrow
Taking the high road
Wherever we go, everyone knows
It's me and my arrow

And in the morning when I wake up
She may be gone, I don't know
And we make up just to break up
I'll carry on, oh yes I will"

This song came on and I looked at Nadir and Sylas (who are in love with each other!) and that line, "in the morning when I wake up, she may be gone, I don't know." It killed me, I thought of just going to the hospital one day, when the cancer gets worse, and that's the day I don't come out. And Nadir comes home, and I'm gone, and it's just him and his dog, head in hands, trying to pick up the fragmented pieces, completely alone. And I try to tell myself that he would be fine, but I think if the situation was reversed, I would not be fine. It's not possible. So I know he would be destroyed. Beyond any of the cancer, beyond any fears I have for myself, the largest one, for me, truly is leaving the people I love the most behind in pain, picking up the pieces, asking questions, asking why, unable to understand any of it. 

So that's been what's rolling around in my head lately. Maybe I shouldn't have gone off those anti-depressents after all...hmm...

UNTIL YESTERDAY...everything changed, well. I shouldn't be so dramatic, everything has the potential to change. My oncologist had an upbeat attitude when talking about my further treatment. He brought us into his office, which he rarely does. And I brought it up. Surgery. In the past he has shot me down. But he was open, and even said that given my young age, and that my cancer is sort of "out of the box" then yes, we should start thinking out of the box. I think that my response to treatment being better than anyone thought or expected has helped him change his tune. That and, well I have to believe a little bit, his getting to know me as a person and a patient. The fact that he has to write me medical release letters so I can go skydiving! Kind of like "okay this girl is a fighter" or more like "okay this girl is bananas so lets see how far we can take her." Either way, I feel he is in my corner, we are on the same page, and that is looking for a chance at a cure now, not just a chance at some good years. 

He has referred me for surgical consult with Dr. Daniel Labow at Mt. Sinai for consult for possible liver resection and HIPEC surgery. He might say no, he might think it's to risky, or I'm not the right candidate, but, he might say yes. If you are really interested, google HIPEC...it's a pretty wild surgery! I feel hope, hopeful at an actual life, a future, I guess I would say "kids" here if I wanted them, so instead I will say "more pit bulls." More skydiving! A future where I can listen to "Me and My Arrow again." 

http://www.youtube.com/watch?v=U1n9QTkrkP0

It's party time!

In the process of packing up my old apartment and moving in to a new one, I have discovered that I have quite a large collection of party dresses. These are the types of dresses for getting dressed up in. You know, like for my birthday, weddings, nice fancy dinners, my birthday, the ballet, my birthday. Since one of these things only comes once a year, and I don't get around to many of the other things frequently enough, I have now decided to find a different more regular occasion to wear my party dresses. Chemo! Yes, I am now getting dressed up for chemo. It's perfect, I can wear strapless dresses for easy access to my port, and I'm basically sitting down all day so I don't have to worry about constantly fidgeting to keep said strapless dress in place.

If you think about it, these parties have a lot in common with my new chemo parties. My friends are often around, and everyone else in the room is putting large quantities of mind/body altering substances in their bodies, which generally produce headaches, some nausea, and tiredness the next day. Sounds just like the day after a wedding reception, or my birthday. Also, upon returning from all of these events, I am used to generally passing out face down, still in party dress, which also happens after chemo!

My doctor says I look great for just having my 5th treatment already, but I already knew that. I feel pretty good too. Chemo is designed to kill rapidly dividing cells, so that's why it goes for the cancer, but also gets your good rapidly dividing cells, thus the side effects. I have come to the conclusion that my side effects are minimal due to the heavy drinking and recreational drug experimentation I put myself through in my 20's. I've trained my healthy cells well, they know how to survive toxins.

So overall I'm doing well. I want to freeze time, right here, right like this. I know I can't go back, can't take away the cancer, I'm not being that naive or greedy. But can't I just stop time right now? Live life just like this. Stick with the chemo and not get worse. Keep the cancer I have now, and not have it grow. I'll even name my little tumors, as long as they don't grow. Maybe name them after villains from Disney Movies? Scar, Ursula, Jafar? Obviously Ursula, the lady villain, gets to be the name of my tumor on my ovary, only fitting. 

Because I'm happy right now, and tomorrow looks great, even this weekend and next week. But the further future is frightening as hell. I don't want to go there. I have learned to manage this, but I don't want anymore that this. 

Anyways, 6th chemo is in two weeks, that's the halfway point! Come by and visit if you wish, wear a party dress, or a suit gents. I'm looking into the chemo suite's byob policy.

Blogging before coffee...

...probably a bad idea. We'll see. Okay this isn't working. Coffee first.

Better. I've been thinking a lot about death lately. I know, weird right? Death sort of then makes me think about life, life now, past life, future. Something has clicked for me, and made it very hard for me to think into the future beyond about 6 months. I'm okay with that for the most part. I think summer will be wonderful! Who wants to go on vacation?

Before I start rambling, let me update you on the facts of how I am doing, assuming that's probably the main reason you guys read this. So I'll do that before I continue on the "dear diary" theme. They added a new drug to my 3 chemotherapy agents. It's called Avastin. For those of you keeping track, I am now on xeloda, irinotecan, oxaliplatin, and avastin. Not sure if I'm spelling those right. I can't be bothered to look it up, the search button on my laptop is just way too far away. I'm doing okay, and finally got through a weekend with no nausea. Yay. Also, we got some good news from the doctor last week, a bloodtest showed that my CEA has dropped a lot. From a 40.5 at the start of treatment to a 9.5! What is CEA you ask? Let us let my friend Wikipedia explain:

http://en.wikipedia.org/wiki/Carcinoembryonic_antigen

So I should really be packing right now. Moving this week to a big, wonderful new apartment with my boyfriend. I'm really looking forward to having some more space to stretch out in. And...we have a dishwasher. I plan to use as many dishes as possible in order to get the full use out of it. I'm taking this to the extreme. I'm talking different forks for different foods on the same plate. Anyways, so this new apartment is (obviously) more expensive than already overpriced closet I currently reside in. It's still "affordable." I think. But I get this nagging feeling...this nagging worry in the back of my head. At night when I go to sleep. Sometimes when I wake up. Or when I miss a shift at work. Or when I feel sick. It's this stress that I am going to die and leave my boyfriend stuck in a lease with an apartment he can't afford on his own. Is that sad? Or just funny? That's what Manhattan living has done to me! Perhaps I should have asked for the "girlfriend has terminal cancer opt-out clause" in the lease when we signed it.

I think my morbid thoughts can actually be attributed to the percocet withdrawal I am currently going through. We will hopefully all laugh some day, years from now, while sipping Arnold Palmer's on a wrap-around porch, somewhere green and beautiful. One of you will make some comment about your arthritis pills not working well enough as you reach for the pitcher and refill my glass. Then I will say "what you need are some good opiates. What's wrong with that quack of a doctor of yours?" And then a memory will pop into your head, from a time long passed and far removed from us now, and you will look at me and say: "Hey Reetz...remember that winter when you had cancer and developed a mild pain pill addiction?" And we well all have a good laugh.

December 7th 2012...

...was a day that changed my life forever. That was the day that I met the surgeon and he confirmed for sure that the biopsied mass in my colon was malignant. That I have cancer. That there are more tumors. That it's widespread. December 11th was the day that I met my Oncologist, and found out that I have stage 4b colon cancer. These dates are forever burned in my mind, they repeat over and over. December 7th. December 7th. December 7th. But the reality is I knew I was sick long before that.

I knew I had cancer a week earlier, after the CT scans, after the ultrasound, before the biopsy. I knew by the way the doctors talked to me, by the urgency of the tests. I knew when my gynecologist told me they found a 12 cm mass on my left ovary. I knew by the way she wouldn't say "cancer" but she wouldn't not say cancer either. She asked me what my support system of family and friends was like. A doctor doesn't do that if they are going to diagnose you with lactose intolerance or cysts. I knew by the way she looked at me.

And I knew before that. I knew when my digestive system was making my life hell for months. I knew when I couldn't sleep at night. Sometimes I think I knew years before. Like I have always had this dark cloud lingering just off shore. This feeling like I was always running from something. Not a fast run, but a jog, not panicky, but still just escaping, staying one step ahead, afraid if I stopped it would catch me.

Well fuck it, cause guess what? It did catch me. At least now I can relax a little, no more running, no more fears, because the last couple of months have been the scariest of my life, and so nothing else scares me anymore. Speaking up, talking about things, confrontation, bills, authority, police officers, mayonnaise, being alone, needles, heights, the ebola virus, stranger danger, people who drink midori. All things that I once found terrifying, all those fears gone. I have one fear left. Only one.  I'm very afraid of dying. And this fear has squashed all the others. In some ways it's a wonderful feeling, liberating, having all those other fears gone. But the dying thing. It's all consuming sometimes. I know the reality of the progression of the disease that I have, and I'm going to fight it as best as I can, but I'm also a realist. And the chances that it will kill me are greater than all of the other things that I was once scared of, greater than getting the ebola virus, or getting arrested, or accidentally eating mayo, or finding myself trapped in a room with someone who drinks midori. This cancer will kill me before any of those stupid, little things happen.

So in part that's why I have started this blog. To document my navigation through this fear, through this shitty, weird, surreal experience that is cancer.

Plus I get tired of writing you all back individually, but I feel bad if I cut and paste an email that goes to Will, and then also to my dad. Repeating myself over and over gets boring. So there. More to come.