Saturday, March 2, 2013

mtv is using my golden tears to raise cancer awareness, and I'm ok with that.




After the surgery last month I had to learn to walk again without part of my lung & diaphragm. The very first day they had me sitting up. The second day I took my IV pole, two vacuum-suctioned chest tubes, a portable motor that sounded like a shop vac and 3 nurses in tow for a walk (if you could call it that) down the ICU hallway. We even tried climbing stairs, but the tubes from my IV only allowed me to take 3 steps up, which I think would be manageable for even the most feeble degenerates among us. I stopped practicing the stairs after that. But I kept walking, and 3 or 4 days later I was doin' laps like lance armst--- I mean, like a pro. It's amazing how fast the body can recover.

After I was discharged from the hospital I went right into chemo cycle #5. I think the extra pain meds have made me extra nauseous this time. There are lots of other "extras" that pain meds give you, like extra hard poop. extra heavy eyelids. extra street cred. extra helpful friends.



For the last few days, Jon & I have been editing the final version of the comic. It's come so very far from the hair-brained scheme we hatched years ago. I had time to kill in the waiting room before one of my (many) doctor appointments, so I pulled out a test-print and started to read. In no time I was sucked into a colorful world that echoed, in a surreal way, the hospital around me and issues I was immediately facing. Jon's drawings are delightfully intricate; you can take your time on each page and notice new details with every read. I was disappointed when  my name was finally called, because it meant a transition from this magical cancer-comic world to real world-- and real cancer. Bottom line: great for making hospitals more bearable. I can't wait until issue #1 is finished.




I suppose I should mention: I will be featured on Season 2 World of Jenks on MTV, which premiers this Monday. The crew followed me for a year as I moved from San Francisco to NYC to pursue my career and a cancer-free fresh start. I'm horribly embarrassed about the whole thing, but I remind myself that I participated in this project to promote young adult cancer awareness and issues of survivorship. When I was first diagnosed I felt so shamefully alone-- my cancer happens to one in a million, and it's even rarer in young adults. The prognosis is grim, but there are a few survival success stories out there if you look hard enough. I wanted so badly to find someone I could relate to, someone to learn from, some lucky soul who had found the light at the end of the IV drip and was ok now. I wanted to be ok too, someday. What I needed was empirical hope. I needed proof through personal experience that my cancer was survivable, that pain is surmountable, that the future is inevitable. I needed accounts of young adults overcoming the physical & emotional upheaval of cancer so that I could be better equipped to navigate my own tumultuous journey. Trouble is, until very recently, people have rarely been encouraged to open up (I mean really open up) about Cancer due to negative social stigma, fear of vulnerability or judgment, or outmoded cultural mythologies of illness. Eff that, let's talk about it! Let's set the record straight and help the newly diagnosed. Empirical hope, knowledge, camaraderie-- this is what I wish to give others by sharing my story with MTV.





Hope creates strength, and with strength we can survive. to ride ziplines.


96 comments:

Anonymous said...

Kaylin, you rock! (as last pic clearly shows) Glad you healing quickly, our very best thoughts and cancer zapping vibes are with you.

Em (UK) xx

Brad said...

Kaylin, so glad you are picking up the comic book again. I was going to promote your MTV moment, but are you no longer on FB? Sending you good vibes.

-Brad

Anonymous said...

kaylin, i came to your site as a writer looking to see if cancerishilarious.com was taken haha... i'm 31 years old, newly diagnosed with a stage 4 glioblastoma (brain tumor), and i'm digging your site. i'll probably spend all morning reading it... keep up the good work, i can only speak for myself but your writing has already helped me feel more hopeful about everything i'm about to go through (surgery and then 8 months of chemo and radiation). thanks!

Kelly Whitley said...

Praying for you!

S.Collier said...

You're in my prayers; no matter what, KEEP FIGHTING.

jessica kaml said...

Kaylin i want to applaud you in helping raise awareness of young adult cancer. My cousin was 22 when she was diagnosed with cancer and sadly lost her battle at age 26, (3 years ago only 3 years younger then myself). Im praying hard for you to keep your strength up thru all of these trials and your an inspiration! Good vibes being sent!

Tye Wightman said...

I'm watching the episode of World of Jenks right now. And, you are absolutely gorgeous! Bald, short blonde or long dark hair....you are stunning. I've never had cancer but I have had my leg amputated twice and I love your attitude for a fresh start and your desire to keep chivin' on! Keep it up lovely! You're an inspiration!

jdolce27 said...

Kaylin, I just came to your site after seeing it on World of Jenks. I was diagnosed with a rare form of non-Hodgkin's lymphoma right before Thanksgiving at the age of 30. It's so great to read about the experience from the perspective of another young adult. I'll for sure watch the show and spend some recovery time from chemo catching up on your blog. Keep up the fight!

Sara said...

Not sure how often you hear this, but I'm watching a quirky little show called World of Jenks and I think you are beautiful. :)

alex :) said...

What an amazing inpiration you are. :)

Sonny said...

Hi Kaylin, just pass by to your blog. It did give me interest to comment. I have been supportive to patients that diagnose with cancer and been able to support them socially. Very happy to know that you are just a FIGHTER this should be an inspiration to all!

God Bless and wish you full recovery!

Clarissa said...

So proud of your decision to document this. I am terrified of cancer, from me being diagnosed with it to someone I know being diagnosed with it.

You're a huge fighter. Keep it up ma'am! Sending positive vibes your way.

Anonymous said...

Thanks for telling your story! Sending all my positive thoughts your way!

Anonymous said...

You are phenomenal and gorgeous! Thank you for letting MTV invade your life to be an inspirational badass for everyone.

Stella said...

You are so incredibly awesome for choosing to let MTV document your story! You are an inspiration to so many people! And I completely understand all of the hospital bills and how stressful all that stuff is. Being a broke college student doesn't allow me to give much but I hope what I sent helps a little!

Keep fighting! Don't ever give up!!!! God bless you!

Anonymous said...

I've read several of your comments and they all say what I've been wanting to say... But I feel the need to say it for myself... I've seen several of your pictures (with hair) and find you extreamly beautiful, I know you hear that a lot lol. But I just wanted you to know that you look equally amazing without hair, just as beautiful... Your an amazing person and love how you pull through everything you've been through, its an inspiration to everyone.. That's all I wanted to say(:

Clair Kwahadi Parker said...

You're such an inspiration! Keep kicking Cancer's ass.

Christina said...

Hi! I have stage 3 thyroid cancer & just had my thyroid removed january 30th. In two weeks I start radiation treatment & get scan done before & after to see just what we're working with. I'd just started working on my own baby clothes business the end of november, a few weeks before I found out & had to put everything on hold.. only two months after I turned 22. I'm so glad you shared your story with mtv! You're an inspiration! I look forward to reading your blog & seeing your story each week on mtv. Sending you love & support from Michigan =)

Azu said...

I know that I am going to love this season, your story is very inspirational!

Anonymous said...

Keep on fighting....You are in my prayers.

Anonymous said...

I find you to be gorgeous. You truly are an inspiration. I don't have cancer but watching you on world of jenk shows me just a glimpse of what cancer patients must go through. You are one of the strongest women I've seen on tv. You're hilarious & I love reading your blog. I will keep you in my thoughts & prayers. I just know with how strong you are and what you've over come that cancer doesnt have shit on you & you will overcome all of this. I wish nothing but the absolute best for you however that may be. I also believe that you are incredibly talented. I love your style and vision. I love what you put together. Keep your head up cause the world is on your side. God bless.

Anonymous said...

p.s.

FUCK CANCER

Jon said...

Speaking as a cancer researcher, there are many groundbreaking therapies coming in the pipeline.

Keep fighting and don't ever lose hope. I may not be smart enough to cure cancer, but there are people out there working on it right now that are.

sicko said...

I will be 25 n may. I was diagnosed with aml lukemia at the age of 14 for the first time. I have beat the odds twice now. I have had more BMAs and spinal taps than I fan count. I have went through more than 15 rounds of chemo. I am about to undergo my 3rd bm transplant. Like u I use laughter to deal. My motto: U can either laugh or cry. I choose to laugh cuz it surely makes the day shorter. Ur an inspiration for us young adults trying to toe the fine line of having cancer and having a life. Best of luck. Another couple of extras those pain meds give is extra awesome dreams and extra awesome sleep!

sicko said...

Btw from Michigan as well... scroll down to my comment for my story. I'm bing treated in detriot. Feel free to hit me up. Also I've become an expert at chemo, radiation, surgery, lines, hospitalization, and transplantation. Lol

Jodi - usairdoll said...

Kaylin, just saw you on MTV and had to look you up. What an inspiration you are! You have had to deal with so much and have such a positive and amazing attitude. Sending you lots of virtual hugs and cancer blasting vibes. Thanks for reminding me what a "bad day" is really. Continue getting stronger!! God Bless!!

Anonymous said...

Kalin
My 19 year old daughter had been battling thyroid cancer for two years. I just watched the first episode of Andrew Jenks show just to see you, an amazing example of courage and tenacity for my daughter. Thank you so much for your honesty and transparency and desire to tell your story.

Anonymous said...

8Kaylin
I was so excited to start watching the show. My 12 year old daughter is in remission fron Ewings. I want her to learn to follow her dream, no matter what. You are truely an inspiration to all!
Marla

Mallory Iacovelli said...

Hi Kaylin, Im 23 from South Jersey. I saw you on Mtv tonight and had to find your blog! I got so excited when I came on here because I had the bottom lobe of my lung and part of my diaphragm removed too. I have never known anyone who went through the same experience. And yes it is horrible to walk up the steps with suction tubes sticking out of the side of your chest. I saw that you have Ewings Sarcoma. I have Osteosarcoma which also happens to a 1 in every million people. I got it when I was 19 in the orbit of my eye. I was also treated in Sloan Kettering in the pediatrics ward. The sarcoma team there is amazing. I went into remission about a year and a half later in 2009. Then last year, in 2012 they found huge tumor in my lung and diaphragm. It was pushing on my heart and aorta. (I made my thoracic surgeon take a picture of the tumor with a ruler.) A month later my oncologist (now getting chemo in Cooper because health insurance sucks and doesn't think its serious enough to have to pay for me to go back to Sloan) found another Osteosarcoma spot in my brain. But thats okay though because they have Gamma Knife that works amazing with little cancerous spots! But anyways I wrote on here to tell you your not alone and your blog is amazing. Its great to know I'm not alone. Thank you

Leslie said...

You are quite an amazing person and beautiful inside andd out.

Molly McLemore said...

Hey, I can totally relate to you bc I have the same cancer a you. Well, mine is in my 7th and 8th rib on the back right side. It's been a journey but as I am getting thru it, you will too :) I've had the same feelings as you have, it took me a long time to deal with having cancer but with the help of my amazing girlfriend I coped with it and now have a positive attitude bout it. It's gona be a rough road but you'll make it thru :) just look up and smile bc the world is yours :)

If you need anything, I'm here :)

-Molly

bella said...

Hey you were great on the show last nite. Another great cancer blog is RockStarRonan. Keep fighting .

Kimmie @ Sugar and Dots said...

I'm being totally creepy and looked up your blog after seeing you on TV. Just wanted to pop over and say that you are totally inspiring. Not as a cancer patient or as a fashion designer... as a HUMAN. XO

Christina said...

Lol, thanks, I have to get the radiation capsule treatment next.. woohoo!! I get to be spiderman.. I hate spiderman.. but given I'll be isolated for a few days I'm definitely going to try & climb a wall or two!! Or just bounce off them like a nut case in a mental ward.. but hey, most of my friend didn't know how to react so I'm pretty used to being isolated by now.. =P

MeghanOB said...

Thank you, thank you, thank you for sharing your story!! I was diagnosed with stage IV non small cell lung cancer a few months ago. I immediately underwent emergency surgery to remove cancer that had spread to three of my vertebrae and replace them with titanium rods to avoid paralysis. Since then I've gone through radiation and started targeted therapy. As a non-smoking, 30 yr old physical education teacher I was completely blindsided by my diagnosis. I'm obviously not the typical lung cancer case at all. My whole life changed in one trip to the emergency room. Like you mentioned in your blog, I've been reaching and searching for someone to relate to, other young adults that have the same questions, fears and dreams. I can't explain the happy sadness I feel reading your blog and watching the show. You're going to touch more lives than you realize. I know mine already feels a little more hopefull and less alone. Thank you and stay strong!

Mike said...

Kaylin, I saw your story on the premier of world of Jenks. I automatically felt an emotional connection to you and your fight against cancer. You're an inspiration to people everywhere; those with and without cancer. You're young, beautiful and I know you'll beat this. I prayed for you last night and will continue to pray for you. Never give up and just know that you'll pull through this.

Kelly Johnstone said...

Kaylin, You are an amazing person! I myself was diagnosed with a very rare cancer when I was 2.5 yrs old called Rhabdomyasarcoma. Cancer of the eye. I had 2 years of radiation and Chemo treatments. Because of the treatments I am now blind in my left eye and I didn't grow like I should so I am very short due to the radiation to my brain. To add to my story a girl 2 blocks from me was diagnosed with the same cancer around the same time. She was a year older than me and had it in her right eye. I live in Rochester, NY and my only thought is that Kodak had some crazy stuff poluting the air. Both her and I are blind in our eyes and short but we are survivors like you and I want to thank you for sharing your story! Keep Rocking! Lets kick Cancer's ASS!

sicko said...

Don't forget the sweet iso gowns the also wear. Lol. I love it when I'm in iso and friends come to visit and ask me if I am contagious and I get to tell them "nope they think you are!" It always freaks em a lil. I no this sounds stupid but I've never met some1 my age going through the same things as I am.
Email me-
katiehenderson48891@gmail.com

Ty, Katie

MiniGreek said...

You are an amazing human being and I just wanted to send some positive vibes your way. I have a high school friend that has had 3 different cancers, starting at about 24 thru 34. He's currently dealing with his latest battle and it just sucks. i think what you're doing will help to eradicate the social stigma surrounding cancer, especially in young people. Keep fighting the good fight!!!!

Becky Mitchell said...

Kaylin, I just watched the first episode of World of Jenks and it has brought me here, your story stood out to me. You are truly an inspiration to young adults struggling with chronic/terminal illness. I hope remission and recovery find you soon. Sending all my love!

Becky-PA

Audrey McGraw said...
This comment has been removed by the author.
Audrey McGraw said...

Thank you thank you thank you for sharing your story on World of Jenks. I only caught a few minutes the other night (the self-videoed doc appt where the suspicious spot was seen in your CT scan, and your feelings on 'watch and wait') but immediately hit 'record' and will be keeping up with the show for the rest of the season. I was 27 when first diagnosed with ovarian cancer and 28 when diagnosed with uterine cancer (2 different primaries). It's so refreshing/inspiring to hear your thoughts and feelings on fighting and survivorship. Thank you for helping to bring YAC to light. In the 'you are not alone' realm, here's my cancer blog: http://audabauda.blogspot.com/

Lisa Daria said...

Kaylin,

I came across your blog via The SAMFund - I'm still delighting over your wry post 'More Things on Strings' and I look forward to reading the archive.

I'm glad you are considering all the YA's out there who need a voice - and your personal voice is honest but funny - I am so happy you are speaking up.

Christina said...
This comment has been removed by the author.
Anonymous said...

Wow Kaylin don't be embarrassed for sharing your story! I lost my boyfriend to cancer nearly 10 years ago and could relate to some of your comments on this weeks show; you are giving us strength with your wit and honesty, thank you so much for daring to be so open.

Amanda said...

Kaylin
I absolutely love your blog and your story. You are an inspiration to me! I love our attitude towards all of the trials and tribulations that have been thrown at you. That's what's going to get you far in life. Keep it up girl and kick this cancers ass!

-Amanda

Anonymous said...

Kaylin ur my new Hero....I'm 25 gonna be 26 Soon March 8 ill be cancer free for a year hope it stays that way hope ur having a Great day

F.U. Cancer - Robert N.

xtinedanielle.com said...

You are so brave to share your story in the ways that you do. I'm really glad you decided to do World Of Jenks because already, you can see the impact it's making. I would have probably never found your blog had it not been for the show. Chin up. You're making an incredible difference. I wish you nothing but the best. Keep on keepin on, Kaylin. You're an inspiration.

-- Christine
http://xtinedanielle.com

Anonymous said...

i just watches jenks and saw you.....i had to look up your blog and see if the shadow in your lung was cancer.....i prayed it wasnt. god girl,you sure have been dealt some shit.i hope and pray that you win this 3rd battle and cancer leaves you alone.i think you are the strongest person ive ever seen.if i was rich id send you enough money to get through your life without worrying on top of trying to survive.keep pushin on superwoman.

Kayluhduh said...

Kaylin, you are seriously amazing,I too had a battle with cancer, unlike you though it was only once, and It was ALL (a blood cancer). Anyway watching World of Jenks the other day your story honestly brought me to tears. You're so amazingingly strong. Keep on fighting you can do this! You're an amazing inspiration. :)

Anonymous said...

You are beautiful and inspiring. Sending good vibes from TX!!

-Elyce

Anonymous said...

Iam romeo I had stage 4 testicular cancer,liver lungs,stomach,testicul,limpnodes, I had a battle of life ,but managed to survive,..kaylin u are my true true inspiration, to hear ur story to feel ur pain I cried with u as I watched I remembered how it felt the chemo the many surgerys,kaylin u arent alone sweet heart iam always here always sweety,u dry those tears and know iam rooting for u

Anonymous said...

Find me on facebook kaylin ,iam romeomenorjr on facebook

sierra fields said...

I was speechless when I was watching the first episode of world of jenks and realized you have the same cancer I do I was diagnosed in February of last year with Ewing sarcoma in my clavicle since then I've had my clavicle bone removed and a thoracotomy of both my lungs I truely felt alone like no one understands but I think you do Facebook me at Sierra Fields I truely hope I can talk to you! It would make my year!

Christina said...
This comment has been removed by the author.
Tyler Logan said...

Kaylin, I was flipping through the guide on my TV today and stopped on MTV, which was odd (I'm normally a sports center type). I started to watch world of jenks, it was about the time you where talking about your cancer. This drove me to find your blog and share a story.

Around ten years ago my little brother started to have trouble walking and was in alot of pain. A month later, after many different opinions, we landed at children's hospital in Columbus, Ohio. There we found out he had Ewing sarcoma a very rare and defiantly not a normal thing for a 9 year old to go through. His tumor was in his spine, they couldn't remove it all because it had wrapped itself around his spine like an octopus. He struggled a lot throughout cemotherapy and radiation, I have never saw a person throw up so much, and hate a wheelchair so little.

Fast forward a year or so (I don't know exactly, I was young as well) he was walking againg and was cancer free. For a few years he was the kid who had cancer at school (I think that ate at him, he wanted to be normal). just last year, after a year of wrestling on the varsity squad (which drove the doctors crazy, but he told them to shove it) he graduated high school.
This past summer he, as he was getting ready for college he told me that he always dreamed about going to college when he was sick and he was surprised he actually is doing it. I asked him why he thought he made it? He answered, because I'm not normal. So don't be normal because I believe Ewings Sarcoma only chooses the special ones.

Caitlin said...

Came across your blog after watching MTV, and I'm now a follower of your blog :) Love your writing style and your voice. Thanks for writing and sharing your story. I wish you all the best and I'll be reading. :)

Anonymous said...

You are an inspiration to us cancer survivors everywhere... Thank you for sharing your story! Kyle Kibby (Kibby421@yahoo.com)

my life: said...

I'm a fan...I find you super inspiring. Thank you for sharing your story!

Katie said...

Your story is so inspirational. Thank you for letting MTV document it and give others the opportunity to see what cancer is like on a real level. You're gorgeous and I can't wait to see the rest of the season. You shouldn't be embarrassed. You're setting such a good example for others who are in your boat.

You obviously rock. The end. :)

Aly B said...

Hi, I found you through the MTV show and just wanted to thank you for being wickedly brave. And I cannot wait for the comic!

Anonymous said...

Kaylin, I'm so grateful Andrew Jenks' show found its way to you. I'm sorry you are dealing with this shitty disease. I'm a young survivor and I think sharing your story can only help others feel more brave. Keep sharing how awful it is to deal with the insurance madness - it's the only way things will change one day. It's ridiculous how much care can be delayed because of your insurance status. You are a gifted writer - thanks for taking the time to write even when you feel horrible. Sending you lots of well wishes from Atlanta.

Sarah Mock said...

Hey i remember you from CCA! We had knitwear classes together : ) Had no idea all of this happened to you...i was living with bad kidney disease when we had knitwear together....rough stuff...made me strong though, as your cancer has made you. its hard at the time, but i always have seen my kidney disease as a blessing...made me appreciate life and simple things like HEALTH!! hahaha jesus...had no idea how valuable my health was til i lost it....makes me mad when i see kids our age overdosing on drugs and drinking themselves into oblivion. ....anyways..hope your fashion is going well! im still designing for plus size girls using upcycled materials. I hope to move to Brooklyn one day as well! always had been my plan. I am excited to watch you on World of Jenks in Brooklyn! ugh..i suck at writing, sorry..just wanted to reach out to you cause you really touched my heart and soul with your grace....oh and p.s. i fuckin loooove the no hair look on you!! it looks amazing cause you have an INCREDIBLE face!!!! : ) yeaooowza xoxox_Sarah Mock

MrsP said...

I've been reading your blog for months now and have been haunted by your words. Your beauty is breathtaking and I knew that before I ever saw your face. Your voice is both strong and fragile. Your artist's eye sees more beauty in the smallest of things than I could see in a lifetime. I was looking to connect with other people walking on this twisted path of cancer. I was diagnosed with mylogenous leukemia in 2008. What I found in your writing was so much more. Your ability to laugh despite the world crumbling down around you is awe inspiring. You have been on my mind and in my thoughts every single day since I first began reading your story. While flipping through the channels, your face flashed on the screen. It took my brain a minute to catch up to what I was seeing but when my senses returned, I was able to record "World of Jenks" and I just have to say, you my friend are a scene stealing superhero! To watch you "in person" on the screen was unsettling...but in the best of ways! I truly feel you were meant to share your story. You've been given this amazing opportunity to be an advocate for cancer patients, both young and old. I can only imagine you are feeling strange in this new "artistic medium" but please know that your voice is now amplified and your story will be heard by so many more. Look at the number of comments on this blog already! It will do nothing but continue to grow. You have a platform now and your fight with this blind, ravenous monstrous disease can be documented and more importantly, I hope you can draw strength from the numerous stories we all share. You are NOT alone, even on your darkest days. There is a light at your feet and others willing to support you when you falter. I send to you all the strength I can summon, along with unlimited prayers and encouragement. I'll follow your words and look forward to that day when you write the BEST word...remission!

Tough Cookie said...

You inspire me. Please keep writing and designing and fighting. I have a chronic disease and also work part-time for KrisCarr.com (cancer warrior herself, just like you). While I don't have cancer, I do understand, to some degree, the health care and job struggles as a young woman trying to live life with a debilitating disease. My condition is neurological and my main symptom is disabling, full-body nerve pain, so I can somewhat relate to where you are and have been, although I'll never truly know. Just know I am here wishing you well.

Alexandria Mckinnon said...

Kaylin, I saw your show two days ago. I am 27 years old and was just recently diagnosed with thyroid cancer. I just had a total thyroidectomy on the 26th of feb. they had to remove some of my neck muscle because the tumor started to attach itself to my muscle. My tumor measured over 7cm and they found cancer in 7 out of the 12 lymph nodes they removed. I've been pretty good until I saw your story and I was so overwhelmed with such emotion I just broke down. I myself started to blog my journey once I found out. I have thought about you a lot since the airing of the show. I'm glad I finally found your blog. I true hope nothing but the best for you. Keep fighting as I know I will!

Lola B. said...

You are incredible. Im reading your story and I don't know you but I wish i did because I know that you are a beautiful person and your strength is beyond the norm. You are a superhero! Just keep fighting and keep being positive! Both you, Kaylin and everyone on this post and around the world battling, my prayers go out. I hope you read this and just know that this stranger has biggest, largest amount of respect, gratitude and love for you. Your story and Kaylin's touches me so much, you guys are beyond amazing,beautiful and extraordinary human beings!
Sending love,prayers, smiles and positivity your way :)

lisa said...
This comment has been removed by the author.
lisa said...

i just spent 3hrs reading your blog from brginning to end. i laughed, i cried, and i loved every word. i think you are amazing, wonderful, special, awesome...also, you are REALLY pretty.

Anonymous said...

Kaylin, thank you for sharing your story through this blog and on MTV. Last September, at age 27, I was diagnosed with a rare form of ovarian cancer labeled as primary peritoneal (PPC).

I had extensive surgery and recently finished 6 rounds of chemo that included IP infusion (where they flush chemo drugs directly into your abdominal cavity). Unfortunately the cancer isn't gone, and I'll likely have more treatments in the not-so-distant future.

I'm surrounded with caring, loving people, including my fantastic husband. But, no matter how many people rally at your side, it's still easy to feel lonely when dealing with cancer at such a young age. There's a shame that comes with it (for me, anyway).

I was (seemingly) really healthy and in great shape when I was diagnosed, yet I'm nagged by a feeling that I must have done something wrong for this to happen. As a coping mechanism I try my best to ignore the war that is going on inside my body. I wear a wig to cover my bald head, modest clothes to cover my infusion ports (I have 2), and a smile to mask my fear.

I'm glad to know there are people like you who are willing to share your story with the world and represent all of us in our 20s and 30s who are living with this useless demon. Thank you for being brave enough not to hide. Please hang on to your humor, your sarcasm, your fight and overall badassness. The rest of us need it.

- Emily

Christina said...
This comment has been removed by the author.
Anonymous said...

I saw you on MTV and I would like to ask if you could provide me with links for medical assistance. My insurance expires the 1st of April. I have asked at the hospital for help, Medicaid office, spoken with social workers and I haven't found assistance. I was diagnosed with uterine cancer in 2011. My email is jet.aimebeaucoup@yahoo.com. wish you the very best of luck and would appreciate your help.

Anonymous said...

It is terrifying to face the loss of your health care while fighting cancer. As if cancer isn't scary enough as it is. Make that social worker earn his or her paycheck. They should be the most knowledgeable person for options in your state. If that person isn't helpful, maybe your hospital has more than one social worker that you could speak to. Is COBRA an option for you? Cancer Care has counselors that you can speak to.
http://www.cancercare.org/diagnosis/uterine_cancer
I know that it is complicated and there are no easy answers. I wish you the best.

Chrissie Fernandez said...

Kaylin, thank you for telling a story that's needed to be told for years. I was diagnosed with Ewings Sarcoma in my sacrum when I was 13, in 2001. I went through chemo, radiation, surgery. It was a whirlwind. I admire you for telling this story on World of Jenks. You are brave and beautiful. Keep fighting and keep your chin up, lady! I'll decline from any further cliches. Looking forward to the comic.

-Chrissie Fernandez

Natalia. said...

Seeing your story on MTV has given me a chance to breath deeply again. Someone gets it, someone else is going through the messed up emotions I am, and that someone happens to be a total badass. You make us young cancer survivors proud. Though I know how scary the moments at night can be when you are alone with your own thoughts, I need you to know how strong you are. You are a different case than anyone else, because you are you. I try to remind myself that when I feel like just a statistic or "cancer patient." It is not just coincidence that you have made--and continue to make--such an impact on others with your life and your story. Sending positive thoughts your way always.

Natalia.

Nicholas Butler said...

Thanks for sharing your story. We should swap horror stories. I was 25 with stage 4 testicular cancer, tumors spread through lungs/esophagus/abdomen regions. Did aggressive chemo and multiple surgeries over the course of a year. Actually spent 40 days/nights in Johns Hopkins. Thank God for health insurance! Nothing like a really shitty situation to make you appreciate everything else.

PS - My mother kept a online journal while I was in the hospital. I think you might be interested to read it to see our situation from a caretaker point of view. Have a happy day!

-nick

Anonymous said...

Wow there's a lot of comments!
I just wanted to thank you for sharing your story. I have thyroid cancer, it spread to my lymph nodes so even though they took my thyroid out they are still struggling to get on top of it. I was diagnosed at 25 so I definitely cracked up when you made that comment about people trying to relate to you through their grandma or dog having cancer.
Thanks again for putting yourself out there!

~Samantha

Anonymous said...

Your story moved me from beginning to end. I honestly think you are one of the strongest people I have ever seen. I am only on the first episode of season 2 of world of Jenks and I have laughed and cried within the first few minutes of your story.

You're amazing, don't be embarrassed, you're doing a great thing!

Ann

Michal Kipp said...

Thanks for sharing your story you are a inspiration to everyone with cancer and without. Plus this blog is awesome!

Madi said...

Dang girl, three steps? Look at you go ;D Unfortunately this feeble degenerate can't join you on the victory laps without my hotwheels (purple wheelchair baby-and I painted the clothing guards with teal nail polish). It makes me happy to see how you handle all of this, even when it seems like the deck is stacked against you. Thanks lovie.
~Madi

Anonymous said...

I understand it. I have lymphoma. Im from Oakland!! Just a bridge separated us!! There are plenty of down days. Its the most lonely thing I have known. To see what you go through gives strength....thank you

Nick

Katie said...

Hey Kaylin! Found your site via the World of Jenks show & am looking forward to reading more of it. I see that you have found StupidCancer which is awesome, I love them. :) I dont have cancer, but many of my friends do. I have a different chronic illness though (which can lead to cancer in some cases) & we take a lot of the same meds (or at least those you showed on Jenks). I has a tip about the pain meds and one of those "extras" ;) the extra hard poop. My GI has recommended Senakot (or any med with Senna in it, I jusr prefer Senakot) up to 3x daily & my special weapon of Kristalose. Its a prescription that can be taken up to 4x daily (i take when needed but its super sweet, so I can only ever get it down twice in one day). I mix it with Sobe Coconut drink, its the only thing that neutralizes the sugar enough to help. (dont mix with fruit juice unless u want cramps lol). They have a liquid version called lactulose, but its like straight corn syrup and I personally couldnt keep it down. But the Kristolose (which come in powder form) has been a blessing for helping to poop with pain meds!!
Wishing you all the best & love your attitude towards life & everything :) Keep up the positivity & wit!! :)

Becki McGuinness said...

My cancer blog: www.copingwiththebigc.blogspot.co.uk
Love to share notes lol! Xx

Nikita Willis said...

What an inspiring person :)

lowens said...

KAYLIN, I was diagnosed with, get this, ANAL CANCER a year ago March 1st. It has truly been a pain in the ass. Remission is where I choose to stay but like you, one day at a time. I am SO thankful for your putting yourself out there as you do. Your vulnerability is courage beyond belief! You are incredibly inspiring and so frickin' brave. This 52 year old female looks up to you!
Peace and Love!
Lisa

Anonymous said...

Kaylin,

I have a friend that battled Ewing Sarcoma in her arm at the age of 6. We just celebrated her 5 yrs being cancer free. She is doing well and is such an inspiration. I really enjoy your story on world of jenks. You are so brave! I just love your outlook on life. Praying for you.

Janell said...

Kaylin, I've been occasionally reading your blog for years now (I think). My son told me to watch this show so I'm at work right now and your face appears and I'm stunned and happy for you and proud.
This is so great. I hope it leads you into a brand new thriving future.

khan mohammad said...

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Amy Gorman said...

Please don't be embarrassed about sharing your story on MTV. You have given cancer a beautiful face to go with an ugly ass illness.

Alexis McCleary said...

Kaylin,
I want to thank you. I watched you on world of jenks and I never knew how bad people can truly have it. And that most people take things for granted, such as your health. I know I have. You made me realize how lucky I am and thanks for that. You truly an inspiration. Following your dreams and keep going even though life gives you reasons not too. I can't wait to watch more and now I'm going to start following your blog.
Good luck with everything.
Alexis

Bri said...

Hi Kaylin, I love your phrase "empirical hope." Hope is always needed, always. Your bright light shines every time you are on the screen and also in your writing. Lots of love from Seattle.

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Sandi said...

I have come to know so many people through the online world since my own diagnosis. I wanted the same thing. I wanted to know someone out there had beaten what I had, and still looked like a million bucks. I wanted to know they could go on living a normal life and knowing that cancer didn't haunt their every step. I think I got that. And now I'm 5 years cancer free and a nurse so I AM that person now. I love it. The comic book sounds very cool. :)

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cancer is mostly found in women, so awareness is the only key to control it in early stage.

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Naz said...

You are an amazing woman,heal fast.You are in my thought and prayers.My husband battling pancreatic cancer and its not easy.You may read our story here:
http://familyfightingcancer.wordpress.com/