October 10th, 2014
The day my life changed forever in every possible way.
We never forget our diagnosis day.
It’s imprinted into our minds, bodies, and souls.
I feel nauseous right now even talking about this, all the memories of the last six years are flooding in, but it’s a day to celebrate. It’s a day we must acknowledge.
Six years ago, I sat in a little white office studying the same diabetes posters, the same pamphlets, the same pens and papers, computer, all the things that would be forever printed in my mind as the worst day of my life. I held my husbands hand, I watched the worry in his eyes, I stayed strong for him. He stayed strong for me. We waited, and waited.
We anxiously awaited my endocrinologist, someone I trusted with my health at the tender age of 19 when I was first diagnosed with that crazy rare disease, pheochromocytoma. I trusted this doctor every year, to monitor, to listen to me, and to make sure I was okay. To not be in the 10% of people that had recurrence.
I knew deep down though, I was. I had known since I was 19, since my first experience with this disease, that something never felt “right”.
While my feelings were dismissed, and I would go undiagnosed for another five years, I sat and waited, waited for the news that would change everything.
We could never be prepared for what the tests had come to say. I had cancer, at 24 years old, and I was dying. I was dying of metastatic pheochromocytoma, I would die of this disease, it was all over my body, I had over twenty tumors, and dying wouldn’t be the worst part… living with it would.
I didn’t know that at the time, all I could focus on was her cavalier way of telling me I would have at the most five years, but in cases like mine I can maybe expect a year. To live.
Talk about a slap in the face, you thought I had anxiety? Well I do now!
Why is it important to celebrate having cancer?
Since that day, we have done everything, EVERYTHING in our power to change the course of this disease. I’m careful not to say fight, because I made peace with my disease a long time ago.
No, I didn’t fight with this cancer. I lived with it. Living with this cancer is more heroic than anyone can ever know.
I adapted to this cancer, I changed my life to have a chance at being able to sit here and talk about it six years later.
Six. Not 1, not 5, six years.
I changed the course of my life, my life with cancer, the life that was supposed to have ended a year ago according to the statistics.
I changed the statistics.
But that’s the thing, I’m not a statistic. I am a living breathing human being, although sometimes I have to admit, along my journey, I didn’t feel that way.
I was a 24 year old ambitious young woman, married to the love of my life, excelling in a career that I loved. I was making plans. I had a 5 year plan, a ten year plan… I was a dreamer. I was dreaming about my next big promotion, we were on our way to the bank to make plans for a new home, I wanted to be the youngest most driven accomplished woman there was.
I had plans.
Plans that came to an abrupt halt. Plans that came crashing down, laughing at me, challenging me to try and continue on.
My world was changed. I was entered into a fight I didn’t sign up for. I was forced to cancel my plans, mourn my future, and live day to day, and soon… minute to minute.
My new job was staying alive.
And with this disease, that’s no easy feat.
All you read is 1-5 years, everywhere. You read about death constantly. You hear about it, you want to live but have to plan to die. At 24. Then 25. Then 26, 27, 28, 29…
Now I’m days away from being 30.
It’s been six years today, and I’m still here.
Why is that?
I’ve put a lot of thought into this, I’ve felt a lot of survivors guilt, why me?
Well, as I said before, my new job was to stay alive. I took my job seriously. I planned, I researched, I “hired” the best specialists to help me achieve my goal, I promised myself I wouldn’t give up, and despite all odds, I changed the course of the destiny that was given to me.
When you’re living with a terminal illness, you can’t just expect everything to be handed to you on a silver platter. You can’t entrust your precious life to others who don’t love you as much as you love you. There’s work to be done. Just because you’re off work, and told you’re dying, doesn’t mean you get a day off. No no, it’s time to go to work.
First stop, change doctors. Find the best. Be willing to go anywhere. Do anything. Once you form a team of doctors you trust and believe in, start
My plan started out as surgery.
Plan 1: remove as much of the tumors as possible
This would set me back a lot of time, because of the brutal nature of such a massive surgery. I never knew pain until I had to undergo my second surgery, where I was literally emptied out, scraped out like an avocado, and put all back together again. Organs are meant to live inside the body, not be taken out and inspected for tiny tumors, and then shoved back inside as if nothing ever happened.
Plan 2: experimental treatment, MIBG radiotherapy
When plan 1 & 2 don’t work, you readjust. You’re given more options. You refuse options. You come up with your own plan. You’re getting good at this.
Backup plan: donate bone marrow to yourself, just Incase
Plan 3: clinical trial, PRRT radiotherapy
When that doesn’t work, you’re given just one more year to live. You don’t give up, you don’t listen to your palliative team, you keep living. You keep planning, you keep readjusting. Day to day, minute to minute. You push through the pain, the side effects, you take more medication, and you don’t give up. No one said this was going to be easy.
Plan 4: sandostatin chemo injections to control the symptoms
Plan 5: Oh, plan 3 is starting to work? Not dying in a year? Well, this is a surprise. It’s starting to work! There’s beginning to be changes. Good changes. I’m starting to change the statistics.
Plan 6: fight like hell to stay alive, through complications, through chronic pain, through medication intolerance that almost kills you, through attacks that are making your body shut down and damaged bit by bit every day. You fight. You don’t give up.
Plan 7: become your own specialist, see yourself as part of the team, the head of the team.
It’s time to come up with your own plans, your own decisions, and work alongside your specialists. It’s YOUR life, no one will fight for you as hard as you will fight for yourself.
Here’s the thing, there’s no point in trying to explain to you all how much pain and suffering I’ve endured. I’ve come to realize that no one can ever understand that type of suffering or loss of dignity. I also don’t want anyone to be able to understand. So…
The point of today is to celebrate how far I’ve come, it’s to acknowledge that one of the worst days of your life, can someday be the best day of your life.
With terminal cancer, I’ll never get to ring a bell and be cancer free. But on my sixth cancerversary, I can celebrate in knowing that I did beat the odds. I lived.
I can move onto a new plan.
The thing is, living with this disease, living knowing you’re going to die… it’s a tricky balance. You will go through phases, doubt, confidence, overconfidence, failure, you will at times lose your dignity, your naked body will become a medical specimen.
You will make bad decisions, you will make great decisions. You will be stressed every.single.day
You will come so close to death, You will live. It’s all very turbulent.
Because you changed the course of your life, the life that was given to you, the life you didn’t choose. You fought for change.
I fought for change.
When you live like you’re going to die, you plan your funeral, you hold your loved ones close, you don’t get involved in any bullshit, you spend all your money, you fight with insurance companies, you fight to be heard, you fight for your plan. That’s where you fight.
I didn’t fight my cancer.
I fought to live.
Now it’s six years later, I’m undergoing my next plan. I’m doing all the tests again, to see where I’m at. To re-evaluate. I’m still figuring things out day by day. Learning about new setbacks, new illnesses I have to fight, I’m making a new plan. But I’m alive.
I’m alive and that’s something to celebrate.
Despite all the worst times, this part of my life has been some of my best times as well. When you change the course of your life, it changes you. Forever.
I’ll never be the same 24 year old again.
But I will be 30, the most stubborn 30 year old you will ever meet. The one that smiles through the worst times, the one that has real friends, the one that has the love of her life still by her side. Six years later, I’m still alive.
Six years ago I set a goal, while fighting to be apart of 50 people who would participate in a clinical trial that would maybe kill us faster or do nothing at all but cause more pain, we do this so that we can improve the lives of others after us. We do this to drive ahead cancer research and hopefully live to see the day where there’s change.
That day came for me, I met my goal. Just last week, the scan I fought so hard to get just a couple of years ago, that was only allowed for a limited amount of people, was approved for everyone. I lived long enough to see that something I took part of is now widely available for everyone fighting the way I am.
I’ll never forget that day.
This is why I fight, to see days like that one.
I still have the same job, staying alive. This doesn’t change anything. Im still stressed to my eyeballs, I’m still in pain, I panic everyday. I’m still going to research, plan, fight with insurance till my head pops off, and love my doctor cupcakes more than I can ever explain. This is my plan.
I made it to year 6.
Despite the odds.
Pheo VS Fabulous