Tuesday, September 20, 2016

I'm dying.

It's happening faster than I thought-- a landslide that started with a few small pebbles and now gravity has hastened the destruction.

I'm in extreme pain all over my body. I have bone tumors in my hip, femur, up my spine, and most likely my arm.

There's no hope for treatment, only managing pain and trying to prolong function. I'm currently on fentanyl and dilaudid.

I had a phenomenal summer traveling all over Europe-- somehow, over the course of two months, I managed to suppress the cancer and pain-- I walked everywhere and did everything-- discovered new places, friends, and art. I started in Paris, wandering around, meeting new friends and discovering museums. Then took the train to Florence, Rome, Praiano, and Naples. I saw Herculaneum and Pompeii (again!). I climbed mountain stairs on the Amalfi coast to secluded beaches and rode scooters to nearby towns. I discovered Naples, my new love, and wandered the strange and superstitious alleyways for days on end. I met a friend in Paris who invited me to St Tropez, an invitation I readily accepted. After Cote D' Azur sunbathing and amazing home-cooked meals, I travelled to Berlin to stay with a beloved friend for a few weeks, before attending the wedding of another friend, in which I read a passage to her and danced all night (something I haven't done in years).

It was a magical summer.

The pain started immediately after I got home a few weeks ago.

Over the last 8 years I've watched all of my friends die from this horrible disease, and it appears to be my turn. I can't stop the landslide. Everyone handled their death in their own way. And so will I.

I'm currently starting palliative radiation for the hip & considering the move back to CA for my last months. It will be so hard giving up my dreams, finally, to this Monster. And yet, I feel incredibly lucky to have survived 8 years past my first diagnosis-- I hope I've inspired some of you to make it even longer. I've made little pieces of my dreams come true in the past 8 years, and that's more than some get. I feel blessed.

The pain is severe & I feel like recoiling but I will try to blog more in the coming weeks/months. I know you are curious, I know you want more of my story. What can I do but give that to you? My goal is to make it to New Year's-- let's hope.

More to come. I promise.



32 comments:

Ada P. Nutt said...

I will imagine you lifting your glass to ring in the New Year...
Love always

Caroline said...

Hugs to you! I have been following your blog since the beginning. I am so glad you had a wonderful European summer. Try the radiation. It has helped other friends with tumor pain. Never give up!

Amber Gregory said...

Kaylin, my heart is with you every day.

LaVerne said...

I'm SO glad you had a fun summer in Europe! You've showed us how to live life, even when faced with adversity. I enjoy your writing, your humor, your wit. I pray your pain can be alleviated.

Anonymous said...

I'm so happy to hear you had an amazing summer. You of all people deserved it, especially after going through radiation just before that. I hate to hear you are having such a horrible time right now. You're in my prayers.

Amanda said...

What an amazing summer you've had ... I'm so glad you've had it. Sending you love and hope.

Anne Fuqua said...

Always know that you have touched countless lives, inspiring them with your courage and entertaining them with your sense of humor, and making the world more beautiful with your art. You're not a cancer patient who who creates art. You're a skilled artist, whose life is impacted cancer. You fight pain and fear with humor and uncommon grace, but reveal raw suffering most people expend precious energy to hide
. You were a catalyst for the previously tiny YAC community. Just a few years back, young adults were alone on island between the pediatric and adult cancer communities. Now there is a whole network of support and fellowship.

You brought awareness to medical use of marijuana and demonstrated that opioids can be life-giving medications for those with chronic pain - be it from active cancer or not. I was a registered nurse before chronic pain hit me as a result of a genetic disorder in my 20's and have worked to ensure access to appropriate pain management for all patients whatever the cause. I was so angry when the government opioid crackdown was even impacting cancer survivors like you - robbing them of quality of life while in hard-won remission. Finances and drug policy shouldn't cause ANYONE to suffer like that, especially not cancer survivors. With all the stigma, being so public about this took some serious bravery! Most people never accomplish all you have in 60-70-80 years. I'm so HS you had an amazing summer. You truly deserved it! I don't want how the heck you did all you did. All of you walking would have hard on a healthy person. Just going overseas like that is something that few if any your situation would have the guts to even consider much less do! The world is a better place now because of you.

Anne Fuqua said...

Always know that you have touched countless lives, inspiring them with your courage and entertaining them with your sense of humor, and making the world more beautiful with your art. You're not a cancer patient who who creates art. You're a skilled artist, whose life is impacted cancer. You fight pain and fear with humor and uncommon grace, but reveal raw suffering most people expend precious energy to hide
. You were a catalyst for the previously tiny YAC community. Just a few years back, young adults were alone on island between the pediatric and adult cancer communities. Now there is a whole network of support and fellowship.

You brought awareness to medical use of marijuana and demonstrated that opioids can be life-giving medications for those with chronic pain - be it from active cancer or not. I was a registered nurse before chronic pain hit me as a result of a genetic disorder in my 20's and have worked to ensure access to appropriate pain management for all patients whatever the cause. I was so angry when the government opioid crackdown was even impacting cancer survivors like you - robbing them of quality of life while in hard-won remission. Finances and drug policy shouldn't cause ANYONE to suffer like that, especially not cancer survivors. With all the stigma, being so public about this took some serious bravery! Most people never accomplish all you have in 60-70-80 years. I'm so HS you had an amazing summer. You truly deserved it! I don't want how the heck you did all you did. All of you walking would have hard on a healthy person. Just going overseas like that is something that few if any your situation would have the guts to even consider much less do! The world is a better place now because of you.

indigo2831 said...
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indigo2831 said...
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Beth H. said...

It's not fucking fair. I've followed you since World of Jenks and am in awe of your tenacity and wit. I have no other words. Just know we do want more because the world has learned a lot from you.

Amelia Castanon said...

I am so sorry you are going through this. You are such a beautiful soul and I can see you are full of life. This breaks my heart to see you going through this horrible mess. You are a true gem to so many people and it saddens me to see this. Lots of love and warm hugs to you.

Anonymous said...

I've been following your blog for a long time but haven't commented before - you've always inspired me to keep fighting to make it longer, and I hope I can keep doing that.. It hurts to hear that you're in so much pain and at this point. Sending love your way. Thank you Kaylin <3 -Hallie

banjokatt said...



I've been following your blog for quite some time. I have always admired your strength, style, sense of humor and your great artistic ability. So sorry to hear you are entering the final stretch of your journey. My thought and best wishes go out to you and hope you can find a way to stop the pain.

indigo said...

That's great you had a fab time exploring, you certainly deserved the freedom. Sounds like you fed your electric soul. I've followed your writing & art, thank you for sharing such expressive & talented creations. I knew Melissa a short time while living in NYC, she loves you dearly through it all. Your candid honesty mixed with a twist of dark humor and bravery inspire many. The amount of determination & wild spirit you possess definitely has etched an indelible mark. I hope the pain can be controlled, I understand how much it can chip away. I so agree with the post above, "the world is a better place because of you." Strength, hope & a toast to NYE from Cali.

Strength does not come from physical capacity. It comes from an indomitable will. - Ghandi

Anonymous said...

You're such an inspiration to so many and are so loved. You've touched us all, shared your unique perspective, made the world a better place. Wishing you relief from pain so you can enjoy your family and friends, sending you good vibes for a NYE toast, and hoping you know just how amazing you are.

bailey said...

You're beautiful and intriguing and awe inspiring. I've been bugging you on Instagram for an update & while I'm so glad to see one, I'm pissed at cancer for treating you this way. What bullshit it is. It's such a great thing that you've been traveling. Meeting people, making memories that we all hope to live long enough to create for ourselves. Life is so fleeting and it doesn't make sense. But, your life makes sense. You've truly touched my spirit with yours, even though I've only seen & heard it through screens. You're lovely & you're on many minds. I'll be thinking of you.

ValeriedeMiami said...

It was so great to see Europe through your eyes in your beautiful photos. My heart soared for you. I am so terribly sorry that you now confront such a harsh reality. Yours is a shining example of an artistic spirit that cannot deny itself. Always you create, expand, grow and teach. Thank you for allowing us to follow your journey.

Deborah said...

I want to say a million sorries to you, Sweet Little One, but mostly I want to address your pain. My husband passed from lung/bone/brain cancer. He did not receive good pain relief until he was on Hospice for the last three months here. His nurse said that none of the narcotics would touch the bone pain. She had him taking Tylenol, then Advil in 2 hours, in a cycle. She also had him on liquid morphine drops and he was able to get rest and sleep at night. Prior to Hospice, he did have steriotactical radiosurgery on his spine for excruciating arm pain caused by the spinal cancer, and then whole brain radiation. With all of that he was able to have a peaceful three month period at home with me and our children. If your family is in California, I would say that from my experience, it would be the greatest gift you could give them to allow them to provide your dignity through this experience. One hears so much about death with dignity these days, and I wish people could understand that the loved ones, that I provided the dignity for my husband. He was never less than the handsome young man I fell in love with and married. What an honor it was to care for him as he passed into new life. This is only our human experience. You, Beautiful Girl, have used your human experience well in touching so many hearts. All my love to you, Deborah

Anonymous said...

you don't know us but we love you. We follow your life and times, highs and lows. We bought terminally illin' and donated it to the child cancer ward. What a gift you give these kids, a way to deal with their diagnosis. A way for them to understand what they are going through. Kaylin you are a bright light in this dark world and we are thankful for your bravery and wit, thankful you share your story with us. I hope you know your impact has reached us all the way down under. Peace and Love.

D & T , Australia

Trix Blanc said...

I feel I barely have the words to express how deeply moved I am by you Kaylin. You are an amazing and inspirational woman. You have the most beautiful and incredible strength to share your journey, but even more than that what an incredible artist you are. Your writing has such a moving candid quality, and your comic such bona fide wit. It takes such generosity to give that much of yourself to your writing and to your readers. I know how touched I have been by your work, and for other who have to face the battle with cancer what a light you must be. Thank you Kaylin.

Melinda Strommer said...

This post brought me to tears. Just saw all of your summer photos and you looked fantastic and happy. Immgad you had such a wonderful summer. It's ok to come home to Cali... you need to be close to family. You will be here for New Years!!!!

Adela Bradlee said...

What a remarkable life you have led. You have accomplished more than most people do in a lifetime. You have been inspirational to so many and continue to be so. I wish you peace and love in your journey.

Sharon Welch said...

What an amazing young lady you are and I know you have done so much to share your story with many other people dealing with cancer. You have realized your dreams with your art show and what an amazing trip to Europe and you had such a good time. Hold on to to those memories and all of us who love you very much. Love is a gift! I pray that every day that God wraps his loving arms around you.
Love you,
Aunt Sharon

Julia Immel said...

sending zen.

Danielle Martin said...







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Anonymous said...

Kaylin,
I've been reading your blog for quite some time. The way you have lived your life - never giving up on your dreams - is an inspiration. You have accomplished more in a short time than most people do in a lifetime. I am so sorry that life is so unfair. I wish you peace and love.

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

Monica Anderson` said...

Hey I'm Monica from Dallas,TX..I've been reading your blogs for past two days.its not easy at all people lose hope and beg God to die..they are least who can fight and get success..I'm hopeful that you are one of those..I know you will win and you're going to beat the hell out of cancer..just like my brother Josh he also suffering from cancer but it is pancreatic cancer..he took folfirinox in chemo suggested by Dr.Gasalberti of http://sportsmedicineclinic.net/ it really helped in shrinking cancer...he is also fighting this battle just like oyu..and I'm hopeful that you both will beat the hell out of cancer!

meshack said...

What a remarkable life you have led. You have accomplished more than most people do in a lifetime. You have been inspirational to so many and continue to be so. I wish you peace and love in your journey

Anna said...

You have inspired so many people.

karen dish said...

WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.
my 28 years old daughter have been a patient of breast cancer . I had tried a lot of anti viral med prescribed to me by doctors over how many years now but I could not see any improvements in my daughter symptoms. One day while going through the internet , i got to know about this great Herbal Dr who uses his herbal remedies in curing people from cancer,quickly i contacted him and he prepared a herbal medication for my daughter which i received and he used it as instructed by dr williams. After few weeks the improvement were very visible.the redness and nipple discharge gradually stooped ,on thing now she is so full of life. I would recommend this to all my friends,families,around the globe suffering from cancer.you can contact him through his email on drwilliams098675@gmail.com.for advice and for his product THANKS TO YOU ONCE AGAIN DR WILLIAMS