Thursday, March 14, 2013

dreams less sweet


currently on my second week, 6th cycle of Irinotecan & Temozolomide.

six more months

and countless hours of pain & nausea

but we do it for that glimpse of light-- of living again. however short it might be, we soak it up.


tonight I am on a Gen P-Orridge lyric binge as I try to distract myself from chemo effects. Headphones on, too many drugs to name coursing through veins.

in the morning
after the night
we fall in love with the light

you can download a little chemo playlist of PTV favorites here. perfect for neutropenic fevers and astral projections.



50 comments:

Sarah Mock said...

sending light and healing energy to you my old school mate!!

MiniGreek said...

Stay strong girl! The world needs you in it!

Anonymous said...

ANC of 94, neutripinic as shit and enjoying every second of it. Ewing's sarcoma here, and beating the shit out of it. 75% of it gone after 7 cycles of chemo. Done with radiation, and cycle 10 out of 17 is Monday. Keep trucking on

Sara said...

Hey, if you ever want someone to skype with or talk to, I'm your girl! I don't have cancer, but I have cystic fibrosis and a number of other things.. Would love to chat! (I don't have facebook though) Deleted it for personal reasons.

Anthea Mayeux said...

I sent you an email the other day if your email is still the same as you had it in a previous date on here. I hope today finds you well. And I hope you get to the mail. If it's changed, let me know the new one so I can forward it!

Erin Orchid said...

Hi! My names Erin, I'm 29 yrs old living near Sacramento with stage IIIc breast cancer, currently in the middle of chemo (9 more weeks of weekly Taxotere), hating it! I saw you on MTV and cried the entire episode. I could totally related to you; from the chemo feeling like the worst hangover EVER (without getting to have any of the fun), to having your kitty cat being your comfort (I have two, Dillon and Daisy, not a cray cray cat lady, just like their attitudes!).
I don't do Facebook and I'm new to the blog deal too. If your up to it I would love to have someone my age to talk to. All the peeps on the breast cancers sites are old and complain ALLL the time! So I'm not sure how this works. Maybe you know a way connect (if you want to and have the time) but I will try to figure this sh*t out, if I can private message you my email or something...
Hope today is a bit better for you! F*ck Cancer!

B. in Woodbury, MN said...

Kaylin, I just watched World of Jenks and was so moved by your feature. Sending positive thoughts and prayers your way that you beat this once and for all. You are amazingly talented and an inspiration to others. Hope you take care : )

Anonymous said...

Keep on fighting girl! You're an amazing inspiration! Glad you've posted a bit more to keep us updated! Hope that means your feeling a bit better.

Anonymous said...

oh duuude i love throbbing gristle.

-shana

Cail Jordan said...

Stumbled upon your blog and I love how you throw the word terminal around like a scarf :). Now I feel better that I do it all of the time too. Ride those nausea waves! I started "red devil" chemo today but really, it's not too bad so far and I hope that you have a good week.
Cailey

Anonymous said...

Make cancer terminal, not your life!! Keep on fighting girl!! I was diagnosed with stage 4 Hodgkin's Lymphoma and awaiting my "R" word--Remission--you WILL persevere!!

Anonymous said...

Hi Erin, I accidentally came across kaylin's blog while researching some side effects, that is how I can across your comment. I'm 30, stage IV breast cancer, all done with taxotere (fun stuff, right), and getting surgery next month. Fuck cancer, send that shit back to hell where it belongs! If you need someone to talk to, feel free to email me at aariyana@aol.com. Keep rockin' ladies, sending both you and kaylin good vibes and healing energy.

Alicia Wignall said...

Your stories and tales of this insanity touch my heart in a ways I can't really explain. My 12 year old daughter is also on her 6 th round of Irinotecan & Temozolomide and she also has Bevacizumab thrown into the fun filled mix.
This is her 4th battle with cancer. She started out at 18 months old with Leukemia (ALL), relapsed in her CNS 18 months into treatment so we restarted treatment and added radiation into the mix. She was doing fine, tested for her black belt in Tae Kwon Do on June 4, 2011 and then in July 2011, we found that she has an SPNET brain tumor. Treatment and Proton Beam radiation had been going fine until July/August of 2012 and everything went to hell. Now, we are doing these three drugs and I hope and pray this is what is going to beat the hell out of this nightmare.
Sorry I have rambled...your story does touch my heart and you are in my thoughts and prayers, girl.

Kevin Lankes said...

I'm into this post on many levels. Introspective melancholy with spiritual undertones makes my loins tingle. People who've never felt that way about anything haven't ever lived. You are a warrior poet. The totally gorgeous kind.

kaylin andres said...

Congrats!

Abby Passow said...

Hi kaylin I'm Abby 12 and u really love seeing you on the world of Jenks. I love how you explain yourself story. After having cancer twice is hard. My best friend went trough chemo for lukemia in first grade. She perfectly healthy and as of this year is cancer free!!! You go girl and keep fighting and maybe one day you to will be cancer free!! <3

Yazzziie said...

Wow, you're amazing.

Anonymous said...

I'm sure you get more of these then you can read. I just want to say that you are AMAZING. Its funny in this age of technology that I didn't think to find blogs such as yours as a form of inspiration to my dear friend Dustin Bressette. Unfortunately he lost his battle to cancer last yearbut I know he would have just loved your blog. His cancer began when he contracted HPV from oral sex, by the time it was discovered the cancer had spread to his brain, lungs, liver, kidneys etc and wad stage four. He fought hard and lived life to the fullest giving away his pain pills to others with cancer who needed it more than him, who could not afford them. And he never complained even though I know it was excruciating. So now I send you all of the healing vibes I would have sent to him and all of the good junior I can manage to send to you from golden Colorado. Xoxo Jamie Melies

JinxedGeek said...

Everything about you is beautiful

Anonymous said...

I totally ship you and Andrew Jenks.

Clarissa Hinojosa said...

I'm watch the show right now pretty girl! Your smile alone is uplifting!

Anonymous said...

Hey, I just wanted to let you know I am thinking about you and cheering for you! I've had acute lymphoblastic leukemia three times (btw ages 19 and 25) and have been recovering from my second bone marrow transplant since June. It's an amazing service that your providing by telling your story. It reminds people like me that I'm not alone. That I'm not the only one who gets to worry about being plucked out of my life to be tortured extensively only to struggle to try to find some new "normal" afterward. So thank you, and keep on keeping on, sista!

e-mail me if you ever need anything! jessica_kennedy@mac.com

Katie said...

Hey Alicia,
God bless your daighter & family. My friends daughter had a SPNET at age 5 1/2, surgery & multiple forms of chemo at Phoenix Childrens, then radiation @ MD Anderson. She relapsed 9 mos after her 1st remission and 2 more lesions were found. Back to MD Anderson to fulfill her lifetime allotment of radiation & was put back on chemo. Her parents were told that she had onlu a few months to live since less than 10% survive relapse, but she showed the Drs that she is part of that 10%! Nothing short of a miracle, they have stopped maintenance chemo and now at age 9, she just celebrated her latest MRI scan being 2 yrs NED! :) I pray the same for your daughter! :) If you'd like to check out her blog (it links to her caringbridge which is McRaeKate) its prayforkate.com

Anonymous said...

Kaylin... It's Louie. I don't know if you will see this but I Just wanted to let you know that I Miss you and Love you very much and I'm SORRY for being a shitty friend. Part of me always knew that even with everything that went down, if there was anyone that could power through it, it would be you. As you've shown the world.. Everything that hindered me before is pretty much dust in the wind now and I would really like to talk to you at some point. You taught me what love is, and saved my life (in Hawaii on those scooters, I dont know if you remember, but I'll never forget.) Anyhow, just want you to know that I'm rooting for you everyday and would like to touch base soon. (916)690-5259 or djlouiegiovanni@gmail.com Stay strong out there and give the Iceman some pets for me.

Jennifer Good said...

Good morning! Just watched the MTV show and before your blog gets overrun with messages I wanted to put mine out there. Can't wait to read your blog and see your journey. Love your talent and humor. Not sure what else to say without sounding like an idiot. Stay awesome!

JD said...

PTV and Cancer...pretty powerful stuff. The mix is great. Thanks for posting it.

Nicole Aicher said...

You got this! Keep a positive attitude and laugh a lot. You are a very amazing and talented women, and i hope to someday have the honor of wearing your clothes line:0) much love and prayers. Nicole A.

Ari said...

You're the reason I watch World of Jenks. The world needs more amazing people like you in it. You're a beautiful person, Ms. Kaylin. Your strength and outlook on life if truly inspiring. You got this :) continue to light up the world with your beautiful smile.

Anonymous said...

You give me hope.

Anonymous said...

You're beautiful :) stay strong and God bless!

kaylin andres said...

Best comment ever!

kaylin andres said...

I totally did not know what Ship meant until the show came out haha. Sorry to disappoint but we are just friends-- he is like a brother to me!

nikkipikki said...

Kaylin I love you!
I have the same family of cancer :)
We are cancer cousins...
holla from Chicago

Rachel Rose said...

Kaylin, I love you! My roommate and I have never met you, but we feel that we know you - a little bit - through your blog. We care for your well-being like you're just one of our girlfriends that we see all the time. You are always in our thoughts and we wish every day nothing but the best for you.

Doughnuts Shields said...

Agreed!

Joe said...

Was your journey to New York to be closer to Gensis P Orridge? Come on, admit it Kaylin, haha. =)

Ok, I'm just glad to see a fellow lover of Psychic TV.

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Anonymous said...

I used to work on an Oncology ward and I literally could not take it. I would get sick when I went to work and saw people as sick as you as young as you. I quit since I loved these people. Watching you on World of Jenks makes me think I can do this to support anyone (and there are menu) who is going through the awful affects of chemo. I wish you the best and am praying for you.

Victoria said...

Kaylin you are so amazing. So inspirational, strong brave, and you're seriously my hero. I will never give up on my dreams because of you. I want to be a fashion designer (I feel connected with you in that way and what you do is amazing), and I've lost countless family members due to cancer. You can beat the shit out of cancer, and you will. You seriously rock and you have inspired so many people, you're such a beautiful courageous strong person, you'll get through this.

khan mohammad said...

First of all I would like to thank you for the great and informative entry.
*******Visites My sites>>>>>>>>>> mental depressed *****************

Carrie Stern said...

i'm doing some research on some different types of cancer, and stumbled upon your site. just want to say, psychic tv is my favorite thing ever. keep your head up.

Pierre said...

Keep on fighting and never give upp

-Regards from sweden

a20f3bae-ad3c-11e2-b962-000f20980440 said...

Omg. I am.so sorry. My husband and i just love you, your courage your strength, your amazin positive out look. Your just beautiful! Please don't give up ever.!!!

Anonymous said...

Omg I love you guys too! Every second of every episode im just waiting for you to kiss haha but I hope you send that horrible sickness packing! Fuck fuck fuck fuck cancer!

Anonymous said...

My name is Nicole, I'm from New Jersey and last week, my aunt, age 40, was diagnosed with stage 4 cancer in her breast, liver, and lungs. She has 5 children, ages 3-13 and I was wondering if you could send some advice my way. The oldest, my 13yr old cousin, is taking it the hardest right now, the others don't know much information just yet. They told her it's terminal and very aggressive. I'm not sure what to say to anyone to make them feel any better. You are so inspirational and so brave. Thank you for being you.

<3 hopeful <3
F**K CANCER
hartni@kean.edu

stem cells therapy said...

We are hospital in pune we advice your health check up regularly.
Cancer is dangerous and deadly disease but now it is recoverable if found in early stage.

starcrow said...

Kaylin, a (((hug))) for you. Rock on....

Ana Andrade said...

Hey Kaylin,
A very dear friend of my has lymphoma and is battling with chemo side effects.
I tried to access your "chemo playlist"but it appear to be "403 forbidden".. I don't know why.
Could you post the name of the songs so I can find another way to get them?
Thank you so much and keep that strength and sparkle!
Kiss,
Ana (from Brazil)

sitaifun said...

There seems to be an inherent belief here that despite all the horrible symptoms of illness that chemo causes that it will somehow magically poison someone into a state of health. Nothing is further from the truth.

Please listen to the last audio, "Cancer, The Big Lie" on Jon Barron's "Take Back Your Health" page: http://www.jonbarron.org/take-back-your-health-audio-series-jon-barron

Then go to http://www.naturalnews.com and click the Radio link to access about a dozen health and freedom related radio programs. Click on the archives for the Robert Scott Bell show and begin to get in tune with the idea that you are not suffering from a drug-deficiency disease.

Also check out sites devoted toward naturally overcoming cancer such as http://www.cancertutor.com Have an open mind and explore.

Chris Cain said...

I am a artist in the charlotte area who recently lost my mom to cancer she fought it strong for 10 yrs. After her passing i immediately started working on a fountain dedicated to women with cancer. Here is where you come in i am looking for appx 100 head wraps used during treatments to incorporate in the piece. Must be signed and dated by each survivor. Email me at cainchris6@gmail.com
Thanks so much



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