Tuesday, November 17, 2015

Chemo 3.0

Just had my first round of Cyclofosfomide and Topotecan-- my last hope defense against the Ewing's Sarcoma that I've been fighting for the past seven years. My hope is that this yearlong regimen will give me another remission, perhaps a year or two, and in that time a promising clinical trial will finally come to fruition. For now it seems like a pipe dream, but it's my only hope at extended life. If this chemo doesn't work, it will be palliative radiation and surgery as tumors arise, until they become too numerous and dangerous, and then I will be considering hospice, and my own death.

But for now, I'm back to the middle, back to purgatory. The brain radiation worked-- my scans look promising. I have no active tumors in my body, but it is obvious Ewing's is floating around waiting to take hold again. I will come to Sloan for my daily communion and pray it extends my life.

First day of Cyclo/topo was mild & I didn't need nausea meds. The hardest part is psychological-- back to the infusion suite, the familiar chairs and IV pumps and sugary apple juice. Every fixture the same, yet everything has changed. Most of the nurses I used to know have gone in the last few years (except my favorite, Louise, aka Weezy, who is still here twice a week to take care of me like old times). The most poignant difference is the loss of all of the friends I've met and loved here. My mind goes back to the last chemo year and our little group of young unfortunates, how we'd congregate in the dark, back recliner area and pass the time talking about popular culture, gossiping with the nurses, and complaining about cell counts. They were a light in the middle of those dark days, and they are not here anymore. And not for the reasons I'd like. I'd like to say they've been cured and have moved on with their lives. But that hasn't been the case with anyone I know. Ewing's either kills you, or you survive a little longer until it tries to kill you again. The closer you get to the end of the book, the easier it is to predict the ending (or will there be a twist?).

Most of all I miss M. I haven't been able to talk about her since her death and the way it was handled with her parents. In the last few months she developed animosity towards me because I was in remission while she was dying (at least, this is what I was told by friends). Whatever it was, she never told me, just cut me out of her life. I tried to understand her thought process-- I understand the anger of having your life cut short for no reason, and I understand the frustration of having nowhere to put that anger, no one to blame. It was painful, but I was happy to be the scapegoat if that helped her cope. And then her parents banned me from attending her funeral-- the memorial of my best friend, roommate, ewing's sister. That I could not understand or forgive, I can't even express the pain I felt during that time. I wrote an elegy that I never published. It just never felt right-- as if I didn't have permission to mourn this person who had such an impact on my life. To this day I don't speak with her parents and I have no idea what caused that animosity in those last days. I'm just left with unbelievable pain. And that pain is front and center now that I'm back at Sloan, getting chemo like we used to together, as sisters.

I'm here hooked up to the IV getting premeds as I write this. The idea of chemo for another year doesn't make me cry. Writing about the pain that came with a best friend's death and the rejection I felt from her family-- that makes me cry. I'm not even sure why I am finally sharing this. I've carried it with me for the past year, maybe this will release some of that pain. Maybe I will publish that elegy soon.

I promise I'll write something more upbeat soon. New projects and new developments.

If you look back through my archives, you'll notice I used to joke about everything.

7 years later and I'm a little burned out.


Thank you for all of the well-wishes in the comment section, I wish there was a way for me to respond to comments individually. Rest assured I read them all and appreciate every one. Your love & support have gotten me through, the least I can do is keep writing. Follow me on instagram @kaylinandres if you can, I tend to update there more than here!





18 comments:

Anonymous said...

hi kaylin.
i found your blog forever ago, through world of jenks, and couldn't help but read it all. your writing is so honest and thoughtful.
this sucks, and i'm sorry you have to go through this shit again. i hope for the best for you, and i hate the unfairness of it all. you're a fighter, though. i know you'll kick all the ass.

yasmine said...

Hi Kaylin, Keep writing I'm interested in your story. wishing you all the best from Down Under

Obsessedwithlife said...

THanks for writing...I hear ya on feeling burnt out as a survivor of Askin's Tumor/Ewing's 3x and now dealing with the effects of treatments where one thing leads to another and has threatened to kill me for the past year... :/...and I've lost SO many friends too...appreciate your honesty.

Serena said...

I feel like I can relate to your friends misplaced anger in someways. It is too bad that you weren't able to reconnect towards the end, or even at her funeral. I guess her parents had misplaced anger as well.

I am glad to hear the first round of everything looks promising. I hope that things continue in this pattern for you. Sending good thoughts your way

xo
(worshipandtribute from instagram)

Amber Gregory said...

Thank you for sharing. I can't imagine the pain you've gone through with Melissa's death and everything associated with it -- and now to be back at Sloan ... heartbreaking.

As always I am a loyal reader and I will be until the end. Thank you so much for coming back and sharing more of your journey with us. It's amazing but I honestly think I've been following you since the beginning and I always wish the best for you and think of you often. I believe we have some friends in common (I live in SF) and that is how I originally found your blog, but at this point I can't remember who it was or how that happened, exactly. At this point I almost feel like I know you, though we've never met. Take care Kaylin. xoxoxoox

Anonymous said...

Kaylin,
Thank you, again, for sharing your most personal thoughts and feelings. You're a wonderful writer and you have a passionate story to tell. A passionate fight for life. The way things ended with Melissa...unfortunate, and sad, to say the least. All you can do is make your own peace with it. You are loved, and you are love, in all its expression. Anger could be seen as an expression of love, too. Maybe...
Anyway, Keep up the fight. You are a worthy opponent and cancer has met its match.
Kick its butt, once and for all!

Carolyn Smith said...

Kaylin, I really admire your tenacity in this battle and the fact that you haven’t let this disease take your spark. You’re an inspiration to all, both sick and healthy. Thank you for sharing your voice. We’re all out here, some of us no more than strangers, but we’re all out here desperately rooting for you. Keep fighting.

Erin Welsh said...

Kaylin, I've been a fan since I was diagnosed with melanoma 5 years ago. While I was sitting having treatment in my local cancer centre here in Canada, I felt completely alone, surrounded by old people. I was searching for other young people going through what I was. I found your blog and have turned to it for comfort over the years. I just want to say the hand you were dealt fucking sucks and there's no better way to say it, but the way you articulate yourself through your writing is truly incredible and please know how valuable it is to other young people in search of an honest, raw and REAL voice of a young cancer fighter. Thank you.

Aly B said...

<3

Aly B said...

<3

Anonymous said...

How are you???

Anonymous said...

You are fine?

J. Westhem said...

A lot of prays to u and ur friend!
All will be good, I hope.

UA, Lviv

Hanna George said...

Actually I still have a little confusion about this thing, yet I should say thank for your fresh ideas.


treatment for hip pain

Anonymous said...

Though I don't know you in real life, I trully admire your strength through out the hardest 7 years of your life. No matter what is going on, you remain strong and continue to push forward with your dreams. You are a role model to many and I look up to you. I have followed you since the World of Jenks and read your blog. You keep taking care of yourself Kaylin.Just remember that you are a true inspiration to those who are battling cancer and even to those who aren't. I can only hope to be half the person you are, you are bad ass!

Danielle Bylow from California

Anonymous said...

I found your blog, having received my diagnosis last week. I love your writing style, your wit and energy is incredible, you make me feel strong and that gives me hope. Thank you for sharing, your generosity and spirit will prevail.

anne said...

cancer
In Dec. of 2013 I was diagnosed with terminal
cancer at the age of 39. The doctors could give
me no hope. I did have chemo and radiation, the
doctors thought that could prolong my life for a
little while. In March of 2014 I had surgery, thats
when they found that the cancer had spread to
my lymp nodes in my right hip area and couldn't
get it all with the surgery. Now it looked like 3-6
months is all I would live. It was a very
aggressive form of colorectal cancer. But WhenI came across doctor Kumar from India he cured my terminal cancer with herbs I'm living very healthy today you too can be save or someone else contact the cancer and kidney doctor via email: DR.KUMARDAVID42@GMAIL.COM

anne said...

cancer
In Dec. of 2013 I was diagnosed with terminal
cancer at the age of 39. The doctors could give
me no hope. I did have chemo and radiation, the
doctors thought that could prolong my life for a
little while. In March of 2014 I had surgery, thats
when they found that the cancer had spread to
my lymp nodes in my right hip area and couldn't
get it all with the surgery. Now it looked like 3-6
months is all I would live. It was a very
aggressive form of colorectal cancer. But WhenI came across doctor Kumar from India he cured my terminal cancer with herbs I'm living very healthy today you too can be save or someone else contact the cancer and kidney doctor via email: DR.KUMARDAVID42@GMAIL.COM