Welp. Nothing lasts forever, not even N.E.D.
I have been diagnosed with a recurrence of my original Ewing's Sarcoma from 2008. This time the tumor is growing from my right lung pleura and is completely taking up the right side of my chest, pushing on my heart. It's roughly the size and shape of a dinner plate, which is to say... it's HUGE. Over the past few weeks I've had a chest tube put in (thankfully out now) to drain 3 liters of fluid from my lung. I've started chemo, which seems milder so far than what I went through three years ago. Still, the side effects remain, especially weakness & vomiting, my dear old friends.
Right now I'm being treated at Sloan Kettering thanks to the hard work of my dedicated family, friends, and... Medicaid. I cannot express how magical SK is, especially Pediatrics, where I am being treated. It's like the Disneyland of cancer wards. I feel I'm in the best, most capable hands possible.
My next chemo is on the 19th, just in time for Thanksgiving & watching everyone around me eat delicious food while I desperately grasp the puke bucket. Each cycle will consist of 10 days Irenotecan and 5 days of some other drug I can't remember. I won't know of any progress (i.e., is it working?) until after my second cycle. This will go on for 12 months, with breaks for radiation and surgery. Yes, I get it all this time!
I promise to keep you all updated, but please keep in mind-- sometimes I don't even have the energy to write. There is an apathy that falls upon you after your 3rd cancer diagnosis. I saw it happen with friends, and now I understand. Why bother to write this time? Haven't we been here before? Why am I suffering through this again?
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18 comments:
I don't knkow whether to write
"Hugs"
or
"Cancer really sucks"
Hang in there Kaylin, don't give up. There are so many people pulling for you and concerned for you. I can't find the right words, I'm sure, to motivate you and I can't imagine what you've gone through and are going through but you still have so much to offer the world. Why oh why do some people have to suffer so much, I don't know. You're a beautiful soul, please keep fighting!
Keeping you in my thoughts and wishing you all the strength in the world. I would wish you courage, but you certainly have that one down pat.
Kaylin,
Just rest as much as possible. Let people take care of you. You won't possibly be able to write, or take every phone call. I suggest to all your friends and fans to send you cards. The real deal! This way you don't feel compelled to write back, when you just can't.
Kaylin, you are not alone. We are ALL here for you. BEAT IT DOWN! You are a Warrior.
Love, Krista
Hi kaylin,
Life has thrown you so many curve balls made of shit it's completely not fair I don't really believe that things happen for a reason but I think you've survived this twice and you can beat it again, beating it is worth it for those moments of light in between and after.
I truly do wish you all the best and as much strength you can manage over the next year, if you don't feel like writing then don't, but always remember its your blog, you don't have to document everything if you don't have the energy, use it when you need somewhere to just get your feelings out or start a personal jornal.
Wishing you the best
This is one thing no-one would wish on their worst enemy.
This is bullshit. :(
Can we send you things? Audiobook gift certificates? Blueprint juice delivery? Is there anything you need or want that could help?
Sending you all my wishes that you kick it's ass. Again. 3rd time's a charm.
I'm sorry.
It doesn't seem like much for me to say that, but I feel I should.
I am going through Round Two and after one cycle of treatment, I want to quit. Throw in the towel. Stop burdening my family and let someone going through Round One have my spot in the ChemoDorm.
Just breathe. Or cry. Whatever feels more right.
There's nothing to be said really. Just keep one foot in front of the other and deal with it one day at a time. I am very sorry to hear this news.
"hear the voice that spoke in pain
trying to give it a beautiful name."
~Joseph Pintauro~
Thoughts
Wishes
Always
Luke
My two-year-old Goddaughter was diagnosed with Ewing's sarcoma a month ago. Her hair has started to fall, maybe we should give her a "chemohawk!" Watching you and your optimism on World of Jenks helps more than you know!
Many, many well wishes to you!
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