Does hope begin or end when options run low?

 ***I'm fundraising 300 donation by my 30th birthday on December 14th.***

No Donation is too small, every $1 helps fund life saving research.

Please consider donating at HelpNikkiBeatGist.com

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I haven't written in a long time. Some what because nothing much was happening in October-- just a big waiting game until my PET scan at the end of the month to see if Temodar was working. More so, because after 8 month of listening to me complain about the same shitty situation gets old pretty quick.

Its so funny because, in the beginning, when you get diagnosed with cancer, everyone sends cards and flowers and gifts. With less rare cancer, people usually go through chemo for 8 weeks, have surgery and get declared in remission. Everyone cheers. But now I'm 8 months in and basically where I started still, just more miserable and hopeless. No one is cheering because there's nothing to cheer for.

When you have a rare cancer and there's no progress toward a cure...because there is no cure, people just disappear. Somewhat because your cancer becomes a new normal. You're not dying outwardly, you're just existing, so they get it used to it too. Some people just never knew what to say, so they fall off the face of the earth. While I still have an amazing support system of my core "people" and some people who have come out of the woodwork to be my cheerleaders, I remain shocked by the callousness of some people in my life who I thought were some of my very best friends who just *poof* going got tough and they're gone.

So, on to the hard part. I saw my oncologist in San Diego last Friday. My PET scan showed some tumor growth in my liver and increased metabolic activity (which means cancer cell growth within tumor), compared to the prior 8 weeks. This is not good news...again. He basically told me there is no other treatment he can recommend for me. There are no more chemo drugs to try. Surgery is still not any option.

He literally said, "I do not have a strong opinion on what you should do next". At that point, I screamed at him, "THEN GET AN OPINION. THIS IS YOUR JOB. THIS IS MY LIFE. NOT WHAT YOU'RE ORDERING FOR LUNCH". I don't care if this was inappropriate. I hate him so much. How could you say that? Your job as a doctor is to have an informed opinion. He recommended I look into clinical trials, but offered no opinion on the trials that are open or how to get into them.

In other news, the whole UCSD team is now fired. Fuck them, seriously.

So, is this where hope begins or ends? All I have is hope at this point, but I feel so incredible hopeless. I am terrified. I don't want to die. This isn't the life I planned. Its so unfair to my husband, my family and me. So much suffering and undo burden. No matter how many people pray for me, support me, love me---in the end, if there is no treatment...I will die. How am I supposed to handle that? Its too much on most days.

I'm angry. I'm sad. I lash out at everyone I love. Everything is a struggle. I can't even do a tiny percentage of things I used to love to do. I'm insufferable. I don't even know who I am any more. I just feel like GIST has taken everything away from me, more so than ever before.

So, what now? We found a GIST specialist in Miami who feels like he might have a procedure that could help me and if not, more clinical trials than the two that are nationally available. If not, I will probably enter a clinical trial at UCLA for sarcoma patients using Keytruda, which is an immunotherapy drug used for leukemia that has recently gotten a lot of news attention.

I turn 30 in just over a month. I had planned to take a two week backpacking trip to Thailand and buy myself a porsche. That's not happening.

What is happening is that I'm collecting 300 donations to go directly toward Wild type GIST research (vis Life Raft Group) because the only way to save my life is to find a cure. I will work tirelessly for my entire life to help myself and my fellow GISTers to find a solution for this horrible disease. Please consider even a $1 donation to make my birthday wish come true. You can donate at www.HelpNikkiBeatGist.com. Thank you in advance for your support. 


Comments

  1. I think you hit it on the head Nikki when you said people don't know what to say as I would put myself in that category. I am heartbroken that you feel like people have deserted you. I am sure they are praying for you every day, they just feel useless to help you. I personally pray for you daily and have even brought your photo (that I printed out) to spiritual type ceremonies I have attended for you to be blessed and cured. At this point in my life, I am also willing to try anything and everything for my personal health as well as those of others in need. I will be making a donation to your cause and will keep praying for a miracle. I couldn't agree more that you've been dealt an unfair hand and I pray that somehow, someway, something good is ahead for you (aside from your awesome penguin husband)!! Sending you much love and support (always).

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  2. Sweet beauty,

    When my son died, people who I swore would be at my side were not there. People I never expected to be there rallied around me like butterflies.

    When I had cancer, my best friends became acquaintances suddenly and people I scarcely knew rallied.

    When my other son needed open heart surgery, strangers came to my side en masse. My "friends" showed up after the agony of not knowing if I would lose my second son has passed.

    Same thing for when I got cancer a second time. When my husband was in ICU for 6 weeks, dying from blood clots in his lungs. Same as when my mom committed suicide last year.

    You know what I've come to realize, darling Nikki?

    You were a strong woman long before this cancer that you think defines you now took hold of you. And now, you are fucking stronger than even you can comprehend.

    Here's the rub, Kid.

    We expect everyone to rally the way WE would rally for them. We set our expectations of friendship and support super high because we know that's what we, as strong women, would do.

    But Nikki, not everyone is cut from that same cloth. Some people can't be in the presence of such overwhelming catastrophes. They're scares of it because it makes them question everything they ever believed in God, in faith, in their own mortality. It's not weakness, it's simply different than what you or I would do, were the situations reversed.

    I'm not big on the "thoughts and prayers" thing. There's nothing wrong with it, of course, but to me...if you're "thinking" of me, you'd call, you'd write, you'd come over. Those are empty words to me. I pray. I do. I just don't always announce it.

    It doesn't mean they love you any less. It just means they're feeling helpless.

    THIS IS where your amazing strength comes back into play. You don't need thoughts, prayers or silence? Tell people what you need.

    I need to have coffee with you.
    I need you to come over with shitty romantic comedies and laugh with me.
    I need you to hold me because I want to cry.
    I need you to bring me a fucking casserole because even though I hate fucking casseroles, I feel that I deserve a fucking casserole, dammit!

    You've always been a strong advocate for others. Be a strong one for yourself. And when people say "if you need ANYTHING", have a list ready to hand them.

    You don't have to wait for people to figure out how to love you through this. Challenge people to think differently about cancer...

    It's not contagious.
    It's not all tears and sorrow 24 hours a day.
    There's still laughter, frustration, indignities and moments of grace, no different than before cancer.

    And, you are not your cancer.

    You are still Nikki...and Nikki deserves nothing less than to be able to count on those who have always been able to count on her.

    Love you.

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