Where did all my time go?
I woke up this morning having gone through the day quite upset, I’ve had a couple of consecutive days like this. This is really unlike me, but there is a reason leading up to this sudden feeling of sadness.
Because I’ve come to the realization that my cancer is invading my body at a much quicker pace than I expected, causing me to become a person that I woke up this morning and hardly recognize.
((When I say the cancer is invading my body, it doesn’t mean the disease necessarily, yes in some cases it has, but it’s also the act of trying to make it go away and the side effects, the subsequent diseases of the cancer, living with cancer doesn’t always mean “THIS LITERAL cancer” that will make you sick))
I talk about adapting, staying positive, and not losing hope.
We can put those things aside for a second, I’m talking about literally having to accept the fact that who I was 1 year ago, NO forget that… even…. 2-6 months ago, is a COMPLETE and utter distant memory of who I am right now today.
How is this possible?
Do you wake up and have that happen to YOU?
The rate of which I have to keep up with the changing dynamic of my body is unfair, in fact I don’t even have the proper words for it. Unfair doesn’t sum up the right amount of feeling I have towards it.
I feel the only proof I have of who I am are the photographs I am incessantly taking and even then it doesn’t prove anything because sometimes I have better days than others and can make myself look like an entirely different non-cancer having person in a photo, which is the point. I want to look like a healthy person, not a sick person for a day when I get all make-up’d and ‘pretty’. So that leaves me with nothing.
Just the sudden wake up call that “wasn’t I able to do this this this AND THIS 1 month ago and now I can’t even get a glass of water from the fridge without it being a massive ordeal afterwards?!
Wasn’t I able to do this or that 2 weeks ago?
Hey when did I start having to use the wheelchair all the time outside of the house?
Do you remember? Neither do I.
Why is everything happening so quickly? If it keeps happening at this rate, what will it look like in another 6 months?
I’m scared to ask that question, but I did. Now I can’t stop thinking about it.
I don’t want to say it’s normal – maybe a better term would be inevitable, but I’ve talked about this many times before.
What’s not normal, is it happening again and again… what I didn’t realize is that I’ve been forced to become so different yet again in such a scarcely short period of time, I’ve no choice but to wonder what’s next for me in the near future if this is now my reality?
Not being able to use the stairs regularly in my house and sometimes having to use a wheelchair……
to being bed ridden and the only activity you have and can’t even look forward to is the bathroom because it sets off your worst attacks?
Now you’re being moved to the main floor, goodbye upstairs, see you only for bathtimes. Goodbye Barbie room, master closet, bedroom, sleeping with your husband, all of the ‘normal’ things you had left’. BYE 👋🏼
This isn’t so bad, the adaptive side you talked about – the good perspective? Until the good things went away. Now you can’t even do a few steps in your own house without a dreaded pheo attack. A few steps and you’re a goner, time for that bathroom routine again. Even then, it’s dangerous. 🚽⛔️ now you need assistance, because you know you’re going to have some kind of heart or blood pressure crisis just taking a few steps from your bed to any direction and it’s terrifying.
You know you will need pain intervention every couple of hours because your body is finding ways of becoming even more disagreeable, and your just suffering at all times now.
Treatment is in a couple of days, and all I can think about it is …
“more pain, more complications to add”
Of course then I snap out of it, I have no choice.
I’m in this situation, the only opportunity I have for a change is this treatment. It’s a potential chance for me to be able to have a difference short term outcome, each time I go it’s a chance to be different, less pain, less crisis, back to ‘normal’ within my self, so I need to have hope.
You always have to find hope someplace. This is where mine is currently coming from. Although right now I have very little, it’s being replaced with fear. I know that’s horrible to say – but that’s what this post was for, to admit things people normally don’t say.
I get hope every day from my god, my husband, and my family & friends.
I may not always admit that I’m scared, that things are moving too quickly, that my life is spiraling out of control… but I’m just like everyone else, a 26 year old woman who’s suffering like crazy with a cancer that’s taking over at a rate that I don’t know how to control that runs into doctors that don’t listen to me because I’m too ‘complicated’!
Sometimes the Pheo is a little more in charge than you might think…
F*?k you cancer, & YOU pheo.
You have no idea how this hit home. As I sit here, tears pour down my face. Hold on, be strong, are mere words, but truth be told, I can do nothing to ease or help you, just be here and share what you going through. Much love and a prayer to give you strength.
[…] having said all I have to say in my last Post, gotten that off my chest… everything I’ve been feeling over the past few […]
Miranda in the midsts of hell you still write eloquently. I know that word “FEAR” that flashes in neon day and night with “what is there to look forward to if it is only pain” . . . And then the sense of “loss” of what you could do. How what had once been simple is beyond your capabilities. You are so strong to share this personal journey with us. I watched a father die from paragangliomas. I felt so helpless. His journey to wheelchair then bedridden living on morphine but he never lost his spirit, his sense of humor, his “I’m going to up and playing tennis again” optimism. Sending you HOPE to fight that damn 4 letter word FEAR.
I’m glad you’re opening up about this. “Unfair” is the word I use the most when I describe your situation to others (Yes I talk about you all the time lol 😜.) Sometimes I get caught in the “unfair” trap though. There aren’t words to describe the crushingly massive amounts of BS you are having to go through and have already survived, and yet it still keeps coming. Yeah. Un-fucking-fair. It makes ME cry, so I know it’s even harder for you since you’re the one in the thick of it. My only solace is this, and it sounds totally crazy, maybe it is- a difficult life is a beautiful life. An easy life is dull. People with easy lives don’t appreciate it. People that struggle and suffer appreciate the little things, they see the beauty in the ordinary, they experience a depth of gratitude few others will know.
So maybe now you’re like “omg Michelle shut up with that crap, it still hurts” lol sorry. Love you!! 🙂
You know when you are at an appointment and its like no problem to sit there and rattle off your whole medical history like you’ve done a million times before, but then they see how old you are and will say something like “Wow, you’ve sure been through a lot!!” and then suddenly it kind of feels like a punch in the gut and you’re just sitting there thinking “Please don’t say that. Please don’t remind me.” Just thought you could probably relate. Lol.
Miranda, I want you to know that your words have had an impact on more people than you will ever know. Your spirit shines brighter than the sun, for all to see, for all to feel the warmth in your wishes. My prayers and best wishes continue for you and your family. May you discover the blessing of every moment, even in the midst of your temporal suffering. My heart breaks asunder by the power of your words and the strength of your spirit. Thank you for allowing us to be a part of your life. I am a better person because you have shared your struggle and your spirit to remain forever fabulous. GOD bless you.
In the depths of darkness you continue to shine as beautiful stars lighting the path. May your soul find peace as your body and spirit continue this horrendous fight. May your pain ease and may you continue to be fabulous, always. Thinking of you and sending prayers.
Miranda, thank you for taking your valuable time to force these words on to paper. I only had a pheo and I know how difficult writing was. To share this gift with us all while you are in the depths of this is remarkable. I will be praying for you, and I don’t say that lightly. May your days be ever brighter.
Thank you for your bravery and sharing your story. I wish you all the best. You’re inspirational.
Love reading your blog. What an inspiring story you share with all of us. How blessed you are to have a loving husband. You inspire all who read your story. God bless you and thank you for sharing.
Thank you for your gift of words! You touch so many of us with this disease. Bless you.
Thank your for putting your feelings into words. No one knows your true struggle but you and the Lord. Thank you for sharing a small glimce into your life. You are very special. Gentle Hugs.
Thank you. Your struggle – so beautifully expressed. I’ve been struggling with the “I miss the former fun, wild, passionate, energetic woman I was and no longer have the strength to be now. I’m so sorry you are in such pain – physically, emotionally, spiritually. I share your struggle. I want you to know I’ve been in that weakened state. I slowly recovered. Now a virus and more Mastie stuff and I’m back to bed and weak again. Hoping it’s the low spot on the NETs/MCAS rollercoaster and we are able to heal and climb slowly back up. Sending sparkling opalescent white light to surround you with peace and hope. I believe We are all so much more than this we are a spiritual being here for the human experience and we old souls seem to be Zebra’s/Masties.