Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, August 13, 2009

Eye On The Prize

I am spending this week coming to terms with my new chemo regimen and how it is going to affect, not only my body, but my lifestyle.
 Believe it or not the largest adjustment to treatment, in my opinion, is the sudden drastic change in lifestyle and disability. 
Don't get me wrong, the pain, the discomfort, the nausea are all terrible, but combine all these things and your getting a beating with the life change stick.
Over night, I go from an active, femme fatale, alpha mom to an all out couch potato. Reading and daytime television can only sustain a person spiritually for so long. Participating in society, having ties to society, for me and probably for many, is a need.

I need to contribute.
I need to relate.
I need to have a niche in the world and suddenly, overnight, how I interacted with the world is changed. 
Imagine how this could psychologically devastate any patients world. 
I feel useless. I am no longer the me I worked my whole life to create. The hobbies I love I can't do. The day-to-day task that NEED to be done can't. It's heartbreaking. 
We are no longer who we always were.
That's if we were lucky enough to have known who we were before getting the dreaded "C" word.
With cancer hitting in the teens and early twenties, we're still facing basic, normal body issues and finding our place in the world. Now we have to battle the normal process of growing into a productive citizens with a gigantic roadblock in our way.
It's be nice if a diagnosis paused everything. Maybe, we could remain stunted at diagnosis and pause all the life milestones that need to be accomplished.
Human psychology just does not work that way.
 I lost many of my coveted roles in life that defined myself within a year of treatment. I was stripped of being a nurse and provider. I was unable to be an active energetic woman. I could no longer be the wife, mother, sister, daughter I wanted to be. This period of transition is devastating. I felt lost, like I had nothing.
I can see why so many patients are labeled as needy and demanding or "difficult." Their life was permanently altered over night. 
SO many have lost everything, but there is no evidence of their loss. They didn't have a tornado take their house and a tree crush their car. They had a disease take roles, which is so much more devastating than losing superficial items. 
Yet it is so much more difficult for people to understand and empathize with the severe loss and grieving that accompanies treatment.
For so long I was searching for a place, any place to relate in the world. Then alongside the pain and the grieving comes the guilt. I won't even get thoroughly into this, but there is the guilt that you aren't who you used to be, that you have changed, and that you can't be to others what you once were, no matter how much you want to.
This can cause an all out cranky crisis. Can you imagine going along one path your entire life, having all your dreams laid out and then whamo, no ma'am, stop and cancer that. You will be watching rachel ray for the next 6 months. It is cause for a severe identity crisis alongside the severe health crisis being experienced.
 This psychological crisis alongside chronic or possibly fatal diseases has been ignored in healthcare for so long.
How could it not? Health care reform has the objective of "patient centered care" but our current system is too costly and inefficient to allow for research into holistic care. 
Our providers are so overburdened with patients and busy covering their asses with paperwork to actually do the work that dreamed of. 
So really holistic care is "who cares?" in treatment, not by individual fault, because so many perfectionists in one realm can not be wrong, but by fault of a system that requires so much protection against litigation and paperwork for insurance to reimburse that actual care can not be done.
Ignoring the psychological segment of care is passe. I am proud to say holistic care and psychology are making their way into treatment as providers begin to understand how health and healing are affected by these factors.
What am I doing this time for my mental make over: I am only watching funny tv, movies, etc. I am Decluttering my surroundings. I Know my priorities and where I want to extend my energy. I am relearning my body and accepting it, even with its new limitations. I am looking at what I can do and accomplish, refusing to focus on what has been lost. I am keeping my eye on the prize.


Anonymous said...


You continue to be my hero. You have no idea how much I've learned from you. Thank you for sharing your life. Hopefully I'm a better mom because of you .


Anonymous said...

Wish there was something I could say to make the challenge easier ... but there isn't. But I will tell you that I'm proud of you Hill ... proud of the spunk ... courage ... intellect ... insights ... & your willingness to share them with us all. You are amazing ...


Sunil said...

Hey keep eye on one thing at a time, and you will surely get success.


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