canĀ·cer
ĖkansÉr/ ā disease; causing the body and mind to adapt, overcome, and embrace change.
Quality of Life:
What do these three seemingly simple words mean to you?
Someone who is living with a permanent illness which will impact their āquality of lifeā will hear this phrase from time to time. For someone like me, who is considered a āpalliative care patientā (which is a polite way of saying my disease will eventually kill me) this term gets thrown around a lot. But do we ever stop to think about what it truly means? Being 30 and terminally ill, I have to think about often.
I used to just see it as a phrase. I actually used to see many things as just phrases, words put together to fill silences in sterile rooms to allow for some sort of relief from the inevitable uncomfortable points of cancer. That is, until you live them and you are intimate with each word. You get to know what each one will mean to you; you get to appreciate what kind of quality youād like to live, and start to live it. I am going to share my perception of these words, and hopefully they will not just be words to you either.
Before I do that, let me introduce myself. My name is Miranda, Iām a 30 year old with a rare form of terminal cancer called pheochromocytoma. Iāve been living with this disease in some way or another since I was about 17-18, and officially diagnosed at 19. After my initial surgery to remove a large ābenignā tumor, I was misdiagnosed with anxiety for 4 years, which led to my eventual terminal cancer diagnosis.
I vowed two things in that moment: one being that I would do everything in my power to prevent this from happening to someone else by sharing my story and learning how to advocate further for rare diseases. I didnāt realize where this vow would take me, eventually filling a large gap for a rare disease that should have never had the opportunity to be terminal. And two, I vowed that cancer would never take my FABULOUS.
I wrote this mission statement when I first started my blog:
āPheo VS Fabulous was born from the promise that I would never let this disease take away the one thing I could control, and Iāve labeled that my fabulous. When I became ill I realized how much we take for granted, and it started with how day to day tasks are so challenging when youāre battling an illness like pheochromocytoma cancer, thatās when I decided I wouldnāt let it take that away from me. Itās more than just looking a certain way, itās about BEING fabulous, strong, and positive when you have every reason not to beā
Youāre probably wondering, WHAT IS pheochromocytoma? Iāll try to keep it as simple as possible. Itās essentially a tumor or tumor(s) that secrete or produce adrenaline. Adrenaline and noradrenaline are hormones that we actually need to function as the trigger for your bodyās āfight or flightā response. These hormones prompt higher blood pressure, a faster heart rate and a boost in other body systems that allow you to react quickly with a burst of energy. *Think, lion attack!* A pheochromocytoma ultimately makes you overdose at any given time on these hormones, without warning, which we pheo people like to call āattacksā. Think: lion attack… with no lion? Essentially your tumor is attacking you with your own stinkinā adrenaline! This causes your body to suddenly react with high blood pressure, increased heart rate and palpitations, and a whole lot of other deadly symptoms. I say deadly because if uncontrolled or untreated, these attacks are life threatening. So not only do I have cancer, but I have a cancer that tries to kill me multiple times a day with itās poison IN my body. Fun, right? I also donāt just have one, I have metastatic disease and have anywhere from 30+ at any given time. (This is reduced greatly!)
Being so young and considered terminal, Iāve had to learn a lot about the phrase, āquality of lifeā. Itās meant to bring a sense of comfort, a sign that no matter what the cancer is going to take from you, we are going to do our best to keep you comfortable while all of these changes take place, and most importantly, just keep you who you are.
We cannot simply continue to live our pre-cancer, ānormal livesāā¦right? Well, I kinda thought I could. I think we all do in some respects, and thatās normal. The difficulty is realizing where you need to adjust your expectations. I didnāt say give up there, did I? Time to ADAPT.
So here comes the hard part, once YOU start to change, no one but you can prepare you for this. The next time you hear āYouāre so strong!ā, donāt shy away from it. Think about what it means to them, what it means to you, and how you have truly earned it. So, you start changing, and this āquality of lifeā thing everyone keeps talking about, seems like a very far away ideal at this point.
āHow am I supposed to have any sort of Quality of Life when this disease is doing nothing but take take take?ā
āI donāt even have a LIFE anymore, how am I supposed to have a āqualityā one?ā
āEverything I am doing is supposed to āprovide me with better quality of lifeā, but after every procedure Iām left feeling worse and can do less.ā
āHow am I not supposed to lose hope?ā
My disease moves quickly, sometimes it seems like I can blink and not recognize myself physically, or suddenly go from walking around seemingly ānormalā to being completely bed ridden for months and needing a wheelchair the rest of the time. THAT was the most surprising, and still isā¦ the uncertainty and element of surprise.
Did I tell you how wonderful it feels to simply be a little more kind to yourself?
Change is constant, and I need to be willing to accept that although my life is very different, itās mine. The fact that I wake up every day is a beautiful thing. Understanding that even the smallest victories are worth celebrating, simple joys are to be found and appreciated every day, because these āsmallā and āsimpleā thingsā¦ probably mean the world to you. I now go through life dreaming that everyone could see it through my eyes. Living with cancer has shown me what a gift life is, the complexity of it all becomes so simple.
Embracing change
Throughout most of my story, Iāve chosen to share personal aspects of my life to help others come to the same realizations and places I have, but hopefully avoid a lot of suffering along the way. Iāve experienced surgeries, clinical trials, treatment after treatment, finding the “best” doctors. Iāve been labelled palliative at 25 years old old, terminal, metastatic, aggressive, all the things you donāt want to hear. Iāve been confined to a bed, a wheelchair, and at times lost my sense of independence. I lost my voice, my ability to share, and my hope. I never thought Iād get through it.
But we did. Because cancer makes you ADAPT and OVERCOME.
I say āweā because my husband goes through all of this with me, from the very beginning. Since my first diagnosis, heās been by my side. Heās my voice when I donāt have one, and heās my biggest supporter when I do. He is my caregiver, my everything. And our loved ones go through this journey just as much as we do.
I want to share with you a glimpse of what my life looked like a few years ago, when I thought I only had a year to live, what led me HERE today.
When they first introduced the idea to set up a bed in my living room to improve my quality of life, I thought, “now!? Iām only 25 years old, Iām not putting a hospital bed in my living room, that will never go with my decor!” (priorities, jeezeā¦).
Remember those simple joys? Small victories? Well THIS was the greatest joy, a godsend, a MASSIVE victory! I could see out a window, have LIFE fluttering around me, I can see my husband cooking in the kitchen, I can see my dogs run around the house, I could go and choose a very pink blanket for my new bed (ha!). I can actually walk to the kitchen and serve myself a drink or snack when Iām feeling well, I can drift off to sleep right in front of my fireplace.
Thatās what quality of life is. Those arenāt just words, This is MYlife.
You too will be able to adapt to your new changing situation, overcome your new challenges, and embrace the changes as they come. You just have to rememberā¦ your new life is exactly that, a new life. You must explore the beauty it has to show, the joy it has to give, and the blessings it has to offer. Just remember, thereās no right or wrong when it comes to your life. As long as youāre the one whoās smiling at the beginning and end of it!
The most incredible part of this story? Iām 30 now, and after going through all of that, supposedly having a year to live, Iām still here sharing, thriving, and learning more every day.
Iām no longer confined to a bed, I no longer live in constant fear, I have accepted that Iām living with cancer. THRIVING with terminal cancer. I have continued to adapt and overcome and change my circumstances through hard work and advocacy. My quality of life now is a direct result of the information and research we have put into figuring out how to improve my treatments and symptom management, always taking the chance, and fighting so so so pretty.
I have learned how to forgive but not forget in order to continue to help others with this cancer, help them not only live but hopefully thrive. The best part? I never once lost my fabulous.
Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, beauty, laugh, and how you share it! I canāt wait to share it with all of you, and hopefully have you share with me. Iām so grateful to be part of an incredible community of fierce thrivers. I look forward to seeing YOUR light, smile, and beauty! š¤šš¼
ā Pheo VS Fabulous
