Hope vs. Reality

Friends, I have been generous in sharing our story with you. Before you continue reading, I’m asking you two very big favors.

First, If you have a child that has any remote possibility of being around Jeremiah, please keep this information to yourself and in adult-only conversations. We haven’t decided how to approach this with Jeremiah.  I’m sure there is a book on how to tell your child you are at some vague stage of dying, but I’ve never been one to read those types of books. Just like we potty trained Jeremiah through song and dance, we will think of a special way to have this serious conversation with him.

Second, please try and respect my reason for sharing this story with you via a blog post. Frankly, it’s easier to tell my story to many of you this way, rather than in person or on the phone. I want my friends and family to be informed about what’s going on, and not just so they have the information. Some of my stories carry great emotional weight. It’s hard to re-live these emotions with each update and re-telling of details. I’m telling my stories this way because I don’t want to have to deal with all those emotions every single day. I love and appreciate all the support you send my way, but please know I might not want to dive in to these details when we next meet.

On my trip home from Boston, I started to wonder, how does one walk the line between realism and hope?  Can one feel both?  Or do they reside at two ends of a spectrum?

After Brandon and I met with the nation’s ‘experts,’ they recommended two oral meds for my next round of chemotherapy.  In one month I will take 5 pills, one everyday.  Simultaneously, I will take another pill for 14 days.  This will be considered a single “round” of chemo. After the 30 days, I will start another cycle or “round.”  After two rounds, I’ll undergo a scan to see what effect the therapy had on my tumors.

Even though this is a new therapy for me, ultimately, it isn’t a cure. There is no cure for my type of cancer.  At this point, target-directed therapies aren’t an option for me. Nor is surgery. Nor is a transplant. Due to the extent of the disease in my liver, the doctors are hopeful the new chemotherapy will shrink those tumors. But essentially, it’s just buying me time. Time for the meds to work.  Time for a miracle. Maybe enough time for medicine to advance enough to find a cure. Because no physician has a crystal ball, no one has really given me my expiration date.  I very candidly talked with my doctor about being on medical disability and/or pulling out some life insurance money.  I haven’t been classified as “terminal,” but her thoughts are I will live over six months but not more than five years.

So back to my initial thought: how can one be hopeful and realistic and the same time?  Does making “plans” mean I’m cashing in my chips?  In all honesty, I want to make some of these decisions while I still can. I want to take as much burden off of my family as possible. No one deserves to deal with this shit. Particularly my husband who really, really doesn’t deserve this.

Believe it or not, I do still believe. I believe that I was put on this Earth for a reason.
Maybe it’s to beat the odds with the chips stacked way against me. Maybe it’s to provide inspiration to others, as so many kind people have told me.

It’s becoming quite clear that there are a few things I won’t be able to do, like take over Ellen DeGeneres’ show once she retires. I’m fairly certain I am a better dancer than her, but I’m also fairly certain she is much funnier than me. When I watch her show I always wonder, “What would I be doing if it were my show?” I would love to know what it feels to bring so many people happiness. To be generous to so many people in need. To laugh and tell jokes and get paid for it!  It’s silly, I know, but true.

I will not be the amazing 40-year-old Olympic athlete representing the good ol’ US of A that I still fantasize to be. Every single time I watch the Olympics, I aspire to do something and be someone great; to work a whole life for a single moment when your entire country is cheering you on. I love those Olympic stories because most of the athletes participating don’t have NFL-style agents or huge endorsement deals. I just love watching someone fulfill their passionate dreams. It makes me so very happy. Technically, I have no athletic ability (aside from a penchant for dance) but it doesn’t keep a girl from dreaming.  Couldn’t you hear the commentators? “One afternoon Lori picked up a pair of old figure skates, drove 300 miles for a ice rink and landed a perfect toe loop.  Now she’s representing our nation at a whopping 40 years of age and killing this performance!”  This should be particularly funny to my friends that have seen me try to throw a ball, ski, ice stake or run for any distance… Ummmm, it’s not pretty.

I’ll never host my own cooking show on the Food Network. I believe I was put on this earth to share my love for food and wine. So maybe I don’t have impeccable knife skills and couldn’t pick out a ’90s Bordeaux from a line up, but what I lack in knowledge I make up in enthusiasm. And, I LOVE me some good food and good vino!

I won’t be a back up dancer for Beyoncé.  Now I have to admit this one is a bit of a stretch of my imagination (like the other three aren’t).  But, if you have ever been any kind of dancer, you understand.  I just wanna be one of the three that flip my extension-laden hair and then prance around telling him to “Put a Ring on It”.

But, what I do have is some time. How many people actually have the opportunity to honestly live like they’re dying?  I’ve always cared about how others feel about me and made every attempt to please people. Now, I’m not a total kiss ass, but I like a nice harmonious life. But suddenly, small people and things just don’t matter. I don’t care how someone might interpret one of my comments. Sure, I’d prefer a nice boring life, with 2.3 kids, a dog and a SUV.  I thought I was on that path, steering my life away from drama and the negative distractions, and I was ready to reap those rewards. But that’s not what’s happened.

This disease isn’t fair and doesn’t make any sense.  I continue to believe. I believe that I am loved. I also believe that the number that has been given to me is an average. I’ve never been average my whole entire life. Why start now?

26 thoughts on “Hope vs. Reality

  1. Even though I (we) haven’t had a fair hand dealt in life I still believe in miracles…keep believing and continue to live life to the fullest (maybe we can even go to watch Ellen in person together)! Prayers, faith, hopes, wishes, & positive energy sent your way today & every day!

  2. Lori, I am so sorry. You truly are an inspiration. You are so strong and so positive. I don’t know what to say and I know it really doesn’t matter what I say. I just wanted to say I’m so truly, deeply sorry you and your family are experiencing this. ❤️❤️❤️

  3. You are a hopeful realist. That is what I will continue to be with or for you. Continued prayers and much love and fun….and dance. Besos Lori (and Brandon and Jeremiah). I love you very much.

  4. Lori,
    I thought I was the only one, but it seems we have the same dream of the Olympics and back up dancing for someone fabulous (the corps is the best, who needs a solo). Keep writing, this is great. The bonds and relationships we build with one another is our legacy; unfortunately for us it won’t be our gold medal in synchronized swimming:(

  5. Your strength, your positive attitude under difficult times and circumstances and your love of so much and for so much provides an inspiration few can match. We pray for you and that miracle that is sometimes waiting for the right moment to blossom!

  6. Lori. You’re strength, humor and tenacity are qualities all of us should strive for. Thank you for being a great example for each of us. You have our continued prayers as does Brandon and Jeremiah.

  7. Lori,

    Keep the faith and hope alive!! I certainly will on your behalf!! If anyone deserves a miracle, it is your family! I will be praying for this and for you everyday! And, I will happily dance my white girl moves with you anytime…it will provide at least some comedic relief for you…just ask Belle! 🙂 Thank you for sharing your story.

    Love you all!!!

    Beth

  8. We love you Lori , you are a great inspiration !!!!hold you head high beautiful girl ,,, miracles do happen !! :):):);););)

  9. Just by writing the way you do, you encourage people, give an example of a more than coherent way of thinking, and still with an amazing sense of humor. Just don’t build a meth lab! 😀 Hopes and Wishes! Marta

  10. Lori, I pray for and your family. For the record, one hour with you brings more joy and happiness than any marathon of watching Ellen d, or any other comedian. Your love is true and authentic. Your friendship doesn’t just curl lips to a smile, but reaches to the depths of our hearts and implants itself that no cancer could ever remove. Please accept my prayers of blessing upon you and your family.

  11. Lori, you exude strength and vibrancy. Our prayers continue for you, Brandon and Jeremiah. Much love and BIG HUGS… Sue

  12. Lori, you are a beautiful soul. Thank you for sharing your story in such a candid way. You are someone who has always taken big bites out of life and today you are that same girl I have always loved so much. I love you.

  13. Lori – you make us all laugh, enjoy our lives, take a moment to enjoy the little ones next to us, and most importantly remember to believe. You don’t have to be Ellen to touch someone. You do it every day. We all believe in you! You continue to amaze, inspire, and touch me!

  14. To say you were average would be the understatement of a lifetime. I love you dear cousin and you inspire me everyday. You are strongest, most genuine, amazing, and positive person I know. You should probably add “Pretty Incredible Writer” to your resume as well. Miss you so much.

  15. Lori,
    The thing about hope and reality for me is that hope is always constant, always present if we choose to be hopeful. Reality seems to change quicker than we can even seem to adjust to the current set of circumstances. I for one like to think I’m hopeful and that’s why I’ve decided to write this. I have hope. For you, for your family, for those who support you in this journey. And it is a journey, that in and of itself is a reality.
    To be honest, this is the first time I’ve read one of your stories, and I want to tell you why. Although I’ve kept you in my thoughts and prayers, I was afraid to know what was really going on. When I first heard about your new ‘reality’, I myself was very, very sick. In fact I would not have physically been able to type this myself in April. Though my reality is different, it scared me to think you were experiencing any reality remotely close to mine, so I chose not to know. I was afraid. Not only for you, but selfishly enough, for myself. I didn’t want to deal with the fact that I was (and still am) dying, and to see someone who I love so much, going through something something so similar, yet strong enough to face it and fight, and speak about it, frankly scared the shit out of me. It made me afraid that I didn’t have any hope, just this reality.
    Reading, and poring over your stories, your realities, and the grace, strength, honesty, and hopefulness with which you approach each victory, each, setback or delay, each glimmer of hope, has helped to restore the same in me. I’ve always had it, and I have been fighting hard to live, to ‘beat’ this. I just didn’t realize how much hope there actually is. Thank you for sharing and being such an inspiration, it has truly helped readjust my attitude and level of hopefulness for my own battle.
    I will be praying for you, I will continue to read, but most importantly, I will continue to be hopeful. Thank you.
    I go in for a third surgery in two months in Tuesday and am prepped for a liver transplant immediately should the operation fail. But I am newly renewed in hope.
    You truly are amazing and have, and will continue to have a beautiful story to tell. Thank you for that.
    All my love and hope for the realities and journey ahead. Stay strong, stay you.

    -Stuart

    • Stuart, we don’t know each other, but if you know and love Lori as I do, you must be a good person also. It’s okay to be afraid!! Life has so many corners to turn and we have no idea what’s around the next one. The fact that you were able to write your post to Lori just proves that you are a stronger person than you think. When one can admit the truth, talk about it and act on it, those are some of the biggest steps you will take. Congratulations on taking those first few steps and having hope. Lori is an inspiration to many, as I’m sure you must be also, especially to your loved ones who travel your journey with you. As for dying, that’s something we are all living to do.

      Maybe you could consider writing about your journey, even if you never post it online, just keeping a journal of what you encounter could help to ease the stresses of daily life.

      Stuart, I pray that your surgery Tuesday is successful, a big step towards your recovery. GOD bless you!!

  16. Hi Lori-I’ve been following your updates and praying for you and your family along the way. Of course, I can’t imagine what you are going through. Your wit and humor remind me of my mom and the way she dealt with everything. I know your situation is not entirely the same but I will say the lessons my mom taught all of us through how she lived her life, were priceless. Thank you for your blog and sharing your story! Love, prayers and a virtual hug sent your way!

  17. Warning: The following post is intended for mature audiences only. Kids, leave the room. Go grab a juice box.

    Okay, all clear? Good.

    * Fuck cancer *

    There. I feel better. I hope you do to, Lori. You may now delete this at your discretion. Hand tough, lady.

    -Rob

  18. Lori,
    Not sure if you remember me from Junior League? I always remember you as the beautiful young girl with such a strong and driven personality that I always admired! I am so very sorry that you are having to endure this ugly disease! I believe in miracles and will pray God bestows his healing miracles upon you! Stay strong beautiful lady!

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