Dear Hair…

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I no longer have any words to articulate or describe cancer, pheochromocytoma, or the combined two. There is no ‘good’ cancer, ‘better’ cancer, ‘bad’ cancer, it just simply ‘is’. This devastation, this tragedy, this continuing conflict between my body and what is life’s most treacherous condition is inevitably going to attempt to rob you of everything you have until you have nothing left. That is cancer. 

I have no more words to describe the effect of the pheochromocytoma tumors that make my heart actually ache, litter me with their adrenaline, make it so that I cannot function even when I am doing nothing at all. All the while waiting for the adrenal insufficiency to then swiftly do the opposite, remove all the cortisol from my body, but leave just enough to survive from the medication I take to replace it and attempt some form of control, only to lose myself into the cortisol adrenal insufficiency abyss. It’s something your body can never get used to, a constant assault on your entire system, day in, day out… 

I just wanted to take a shower, to use my incredibly lavish shampoo and conditioner I had ordered and reserved for times such as these…

I began my special ritual, only to be met with strand after strand… tangling through my fingers, continuously letting go all over me.. as I try and grasp what’s happening through my tears.

Little by little, it can no longer be ignored, because it’s no longer so little, and with this comes acceptance… the time has come, I am losing another piece of me.

This comes as a reminder that no matter how much I want a glimpse of relief, a tiny piece of reprieve, a moment of normalcy, a shower… to wash away the feeling of waste my body is turning into from this disease.

Instead washing away clumps of my hair, another piece of me, is swirling down the drain, right before my tear soaked eyes. 

I instinctively run my fingers through my hair, as you would every shower, when your hair cascades down your back, feeling new, but instead I am met with coarse pieces of my beautiful hair, not where it should be.. leaving my scalp, with such ease…

I am turning twenty five in two days, last year when I was days away from turning twenty four I was diagnosed. This year, I said “I won’t let that time define my happiness, I will celebrate my new life, I will celebrate my gratitude, this new me.. scarred, broken, and fearlessly beautiful”

It will be a happy week I said, I was naive to think that cancer would go away because its my birthday, or feel bad for me because my symptoms are worsening and I need a break, it doesn’t give you breaks because your body is shutting down. It will continue taking, it is greedy and unkind, because cancer just is. It is especially at these times that it will remind you, it is there, and it will faithfully remind you that  it is not going anywhere. So til’ death do you part, you will include it in your special memories, and it will test you at your most vulnerable times. 

One of my very dear friends reminded me today “you can still be a gladiator and cry”, so I did, I chose to cry, and grieve the loss of all of the things this disease has taken from me, although my hair is not all gone, I know it is not so slowly going away, swirling down the drain, one sad expensive shampoo filled clump at a time. 

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Dear Hair,

You have always made me feel so special, I’ve always taken the time to treat you with extra special care, and in return you have made me feel beautiful when I needed it most.

You made me look cute as a button on picture day, gave me extra confidence during my most important job interviews, your voluptuous curls shined on my wedding day, and we always were so fab together.

I have been blissfully ignoring that you have been leaving me, slowly, because it wasn’t time yet. It wasn’t part of the plan, it wasn’t your time to go, we had no warning. I haven’t started treatments yet to make you go away, so this was just a cruel surprise, a surprise no one will ever be built to deal with emotionally.

Whether you are losing it because of chemo, radiation, cancer its self, AI, or other chronic illnesses, it doesn’t matter. You have always been part of my fabulous, and with this loss, I will say that in honor of you, and every other beautiful soul who is looking down at their hands filled with their hair, sobbing a cry they will only know to be the most disturbing cry of their fight, for all of the anger and unfairness you feel.. it’s okay.

I will not say sorry for feeling this way about hair, because it’s NOT just hair, it’s a symbol of another piece of ourselves lost to something that we have no control over. The harsh realization that this illness is now becoming more visible to the eye.

I am writing this most importantly to forgive you, I forgive you cancer. I will continue to work with you to find a way to coexist and live my best life, to seek more beauty in your pain, to push further through your demise, and treat myself by smiling, laughing, and loving harder than I can hate.

Sincerely,

Miranda Fabulous

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Fabulous is your light, your smile, your energy, your positivity, your willfulness, your vitality, passion, excitement, stubbornness, beauty, laugh, and how you share it! 
My mission statement for this journey was to stay fabulous, never let it take that from me, and to find the good in every situation. Well, I can lose many pieces before anyone takes my fabulous… even my beloved hair. 

Pheo VS Fabulous

#mirandastrong #netcancer #pheochromocytoma #AI #fabulous #zebra #dearhair

3 thoughts on “Dear Hair…

  1. Pingback: Another piece of me… | Pheo vs Fabulous

  2. Miranda you are an absolutely amazing writer.. As I read this post I am crying you put into words what I have been feeling for the last year. I had bilateral Pheochromocytoma and had both adrenals removed in August 2014. I started losing my hair in January 2015 and it hasn’t stopped and not one doctor has an answer for me. Have you done some research as to why this could be happening? I have tried every shampoo out there and taken biotin everyday and it hasn’t helped. I am still awaiting my genetic test results and to find out if the Pheos were malignant. I somehow want to make a difference and make people aware of this disease like you.

    Liked by 1 person

  3. 💗 I am so sorry to hear you know what this feels like, I don’t wish it upon anyone. As you had bilateral pheos removed and both adrenals, you are adrenal insufficient as well like me. It seems the lack of cortisol does this to the body, the minute I started losing cortisol function, the hair loss started. My endo said it could be the pheo itself causing it, sometimes the excess of hormones can actually cause the hair loss, but it seemed to be more the lack of cortisol timing in my case. I confirmed this because once I was diagnosed with AI, and started cortisol steroid replacement, eventually my hair loss became less severe, and now that my dosing is well adjusted and more balanced, I’ve actually gotten it to a point where it’s more stabilized and seems to have slowed down quite a bit. So basically, the right steroids/cortisol levels seem to be the answer to the hair loss issue so far. I truly wish you the best results – the more pieces of the puzzle we get the better understanding for this complicated disease, thank you for connecting with me, I appreciate your kind words so much.

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