Friday, November 30, 2012

Lifelines

Here's the plan:

I am to get 12 cycles of chemo-- 2 weeks on, one week off, over the course of a year. I have 10 cycles to go. During this time, due to the Irinotecan,  I will feel weak, nauseous, and have extreme abdominal cramping. I've already lost most of my hair, so 2013 will be a relatively hairless year. I get infused from 9am-12:30 daily, and am then left to my own devises, which usually means sleep and netflix. I want to find income of some sort & am (very tentatively) considering re-opening my etsy shop & sewing up some samples.

My bills from the epic one-week uninsured stay at Bellevue add up to over $6,000... I haven't looked at all of them, to be honest. You'd think for 6k I'd get better inpatient meals than a corn muffin and a saran wrapped piece of american cheese on a styrofoam plate, as I was served for breakfast one day:


If you'd like to help out with my egregious debt to the City of New York Public Health Services, please click the donate button to the right-- I need all the help I can get right now and I left my shame at the infusion room door. 


I had to cut off my hair a few weeks ago & it was more emotional than I thought it would be-- presumably because I hadn't cut my hair since it started growing back in 2009. That hair represented 3 years of remission, now gone. I saved the braids, I'm not sure why. I labeled the bag "RIP Kaylin's remission, 2009-2012".  It was a private affair, no camera or chemohawk, which would've felt cheap and exploitative to my tresses this time around. Something has changed. I'm no longer documenting my treatment with nervous excitement, I don't feel like making fun of everything cancer-related. I should change the name of my blog to "Cancer is Annoying as Fuck, Please Leave Me Alone (the cancer, not you)". 


pre cut

back to bald


So here I am in purgatory again, the space between. I'm resigned now to the idea that my cancer is a chronic affliction, something I will have to deal with on and off until I die. I am a professional cancer patient. This is my fate. On my left hand my lifeline splits dramatically in half, with each end arching in different directions, away from each other . When I was a kid I wondered what this meant-- would I be in a car crash half way through my life? Would I almost die? The thought was terrifying. Now I know: it represents life before cancer, and with cancer.

Now I just need to learn to live with it. 

20 comments:

B. said...

It took me a really, really long time to accept that I had chronic cancer -- and it's not hilarious, and it isn't just annoying. It sucks balls. But somehow, we carry on. And you will too. THe whiplash back to this foreign country after a few years of remission i imagine is tremendously difficult. The grieving, and mourning, sometimes is too much to bare... but you will do it, one day at a time. And somehow we tend to find the beauty in all this pain, and call it our life.

Sending love,

xox,
B.

LB said...

Bummer to be sure. Glad you got the insurance you need. You can most likely negotiate for a reduction in the $6k previous bill. Ask the billing department to reduce your liability to the amount that medicaid would pay had they received this bill. Medicaid also takes 9 months to pay and you would expect the same extended courtesy. You may temporarily loose your hair, but listen to B and don't loose your hope.I am amazed by your creativity and will be looking for your etsy account.
Namaste

Cris Chagas said...

My worst fear was having a cronic cancer and I didn´t know what that means... Now I know...

I´m felling just like you. I´m doing a similar protocol (6 cycles of chemo- 2 weeks on, one week off) and this is very hard anyway. But we have too be strong. What to do?
xox
Cris

Jordan Lane said...

Thank you for your candid blog. Cancer does suck. But you are helping those who are in a similar situation. Thank you for that. My mother-in-law fought for her life seven years ago and beat it. You will too. Keep fighting. -Jordan http://52daysthecancerjournal.com

Robyn said...

Kaylin...

I can't even begin to imagine your struggle, but I am constantly amazed at your canny ability to poke fun and find beauty. You are beautiful. My thoughts are with you while you're going through your treatments.
<3

Robyn (Vicki's friend)

Anonymous said...

You are amazing. I just read your entire blog. You are incredible.

eileen@womaninthehat.com said...

I also saved my hair in a bag when I cut/shaved it during chemo, but threw it out after when the hair grew back. Your last post broke my heart. You're right that it's funny, until it's not funny anymore. I'm so sorry that remission didn't ... stick. I wish you all that's good and as beautiful as you are.

Aunt B said...

Kaylin found out Monday that surgeons at Sloan-Kettering will crack open her chest on Jan 28th and take out the tumor. She will be in the hospital at least 7-10 days. Her mom is flying back to be with her. The family will keep you posted.

Sandi said...

It was my worst fear for my cancer to come back. I've been in remission now for 5 years. Holding strong to that. I'm also a nurse now. I will never stop fighting cancer.

Sandi said...

It was my worst fear for my cancer to come back. I've been in remission now for 5 years. Holding strong to that. I'm also a nurse now. I will never stop fighting cancer.

Katy said...
This comment has been removed by the author.
Adam Reynolds said...

Kaylin, I saw you in the preview for the upcoming season of Jenks. I think you look beautiful and are amazing and I hope you kick cancers butt for good. I lost a close friend to cancer and I pray you beat this disgusting disease.

Katy said...

Kaylin,
Watching you right now in World of Jenks! The minute I saw "Cancer is Hilarious", I knew who you were! Thanks for spreading awareness! Check out my blog Mohawks and Mammograms if you want! I'm a recent cancer survivor diagnosed at 33. Cancer fucking blows. X

Anonymous said...

Kaylin,
I just put on MTV and there u were talking about Ewing sarcoma the Exact Cancer my mother age 52 was diagnosed with in 2011...she received 10 rounds of VAC and IE along with 6 weeks of radiation but sadly after a years worth of battle she lost...I wish she could've met you given how rare this cancer is and that people do survive from this...doctors told her 3 months she faught for a entire year...Now you go and prove them wrong...beat this fucking cancer!!!

Anonymous said...

I stand behind u a hundred percent, we are the.same u &me my heart goes out to u iam romeo iam a stage 4cancer patient slash survivor ,iam on facebook romeomenorjr, you are so loved as a person all my love thoughts and prayers ,there is hope,i still believe theres hope and fath

Anonymous said...

I stand behind u I do be strongbe hopeful kaylin,if u want im on.facebook romeomenorjr

Anonymous said...

Would people send you money if you were a fifty year old woman/man/Black person??? So many older people are alone and bankrupt because they are not young and adorable. I wish you every possible moment of love and healing always.

Anonymous said...

Would people send you money if you were a fifty year old woman/man/Black person??? So many older people are alone and bankrupt because they are not young and adorable. I wish you every possible moment of love and healing always.

Rascalcat said...

You are the most talented, hippest,funniest, most soul deep beautiful person I have ever become acquainted with. You are not alone. Thanks to Jenks you are going to be a big star. Heartfelt love and best of luck in your battle and career. Can't wait to see you next week on Jenks.

Love and hugs,
Rascalcat

Theresa Taylor said...

Kaylin,

You are beautiful inside and out, it shines through. I became aware of your Cancer is Hilarious blogs through watching World of Jenks. You are amazing. My prayers are with you that you will continue to find the strength to kick cancer's ass for the last time. I wish you every happiness and a long and healthy life. You are an inspiration. Thank you for sharing your story with us.

-Theresa