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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Monday, July 20, 2009

The "Why-Not-Yous?"

I didn’t sleep well last night.

I do usually sleep well.

Yesterday was one of those days, too.

I thought I was doing okay, and I was, if I was left alone to do whatever I felt like.

If I was interrupted, that was a whole different story.

And forget abut making any kind of request, or anything that sounded like a request, or anything that might be misconstrued as a request, because I just wasn’t doing it.

I am only doing what I want to do when I want to do it, except for doing things with X of course.

He gets special priority.

It was just one of those days.

We all have them, those days, where life is an irritation and so isn’t everything in it, the pain and burdens are just a little too much to bear, and if we’re asked one more question or to finish one more task then we might just be pushed over the proverbial edge, so back off!

I know, we have all had those days.

My bad days are those to the Nth degree, and believe it or not, on those days you are not as close to your breaking point as you may think.

I hope that brings some of you solace, because I have tested the waters.

A bad irritating day like yesterday where you think you might just take a noise dive off a cliff is far from actually taking that dive. Take it from me, there are ions left of problems that can be tolerated.

You can go a long way, baby.

The mood I am experiencing is difficult to explain to anyone else.

It’s a combination of high stress, high anxiety, with deep depression that transforms from “Why me?” to an angry “Why not you?”

If you’re sick and you have gotten to the “Why-the-hell-not-you-stage,” I think you are coping normally.

Let me tell you about the “why-the-hell-not-you-stage,” because I think you’ll find it a morbidly amusing.

It kicked in with me very quickly, very, very quickly.

I found out about my possible diagnosis the naughty practitioner way: I listened to the radiologist report.

I was working in the emergency department on a weekend. I had held off, I had fought myself back all through Saturday.

It was now Sunday, and a friend of mine was continuing to ask what the results of my scan were.

He didn’t know exactly what we were looking for.

I don’t think he would have asked if he knew, and I certainly think he would have kept his mouth shut if he knew we were going to find it.

This was one of those defining days in life that you will always remember, like it was yesterday, clearly and eerily, like you’re stuck in time.

I took my time and cried that day, in shock, still hoping that maybe I had sarcoidosis.

My biopsy was scheduled for Wedsnesday.

I decided to work my Tuesday shift.

This is when the “Why-the-hell-not-yous” kicked in. They kicked in with a fury, taking with them all possible empathy for 90% of the emergency room patients who walked in that day.

In general, emergency departments are not glamorous, stimulating, gut wrenching, adrenaline-producing arenas seen on television shows like “ER.”

Really, most of the patients are less acute than the people in the clinic on “Grey’s Anatomy.”

That’s because emergency departments in the United States are used as clinics for people who can’t or don’t know how to get any sort of health care anywhere.

Nurses try to do some teaching on how to get a primary care provider and where to go when people present with sun burns (that an be treated with aloe, not the second or third degree kind), sore throats, tooth aches, routine pregnancy care, ear infections, etc., but this is not the setting for education.

The volume of patients is just too high, and it’s too high because there are simple clinic problems tied in with actual emergencies, such as five car pile-ups.

Anyway, so on this Tuesday, and in light of my possible diagnosis, I was running the clinic rooms.

One after another I saw tooth ache, after sore throat, after earache until eventually I saw a 19 year old mother with three dirty kids and a teenage “father” (though not the biological kind) in for a “sprained” ankle.

Her children were rowdy and out of control so despite the fact that there were others in the waiting room and she was occupying a room with two beds, we couldn’t place anybody in the beds, since the kids were running back and forth from the hall, into the bathroom, to their mom, jumping on the stretcher all with ratty hair, dirty clothes, and kool-aid stains on their under 3 year old lips.

When I tried to assess the pain in her ankle, it magically moved.

She could barely decide where this extreme pain was that brought her to the “emergency” room.

She could put weight on the ankle, she could run, she could probably skip, but her pain was so terrible that she had to drag her three kids out to the emergency department so she could request some vicodin for an injury with no signs, no swelling, and no obvious pain.

That’s when it happened.

I gave her “the eye,” “the glare,” you know, the one that curses the recipient with all the might in your being, hoping that if you look and think hard enough that, maybe, that girl, that drain on society that’s popping out babies left and right with no apparent desire or ability to care for them and tying up the health care system with vague complaints that end in “can I have pain meds?” will have the cancer that I have, the cancer that was derailing my career, halting my education in its tracts, preventing me from being the alpha, soccer mom I dreamed of, and pausing my productive, contributing life.

I think if given the option, this girl might have taken it. She was certainly spending a lot of time and energy waiting around hospitals with three young children to possibly feed a habit that I now had relatively open access to.

She could be the disabled one, sitting at home, watching television, throwing back pills like a human pez dispenser all day while social security is forced to pay the bills and other people need to be responsible for her children.

This appeared, from where I stood, to be her ultimate goal.

It was certainly where she was heading. I don’t know if I could label it a “goal” since that would require forethought, and I wasn’t quite sure if this specimen had ever had a thought other than a narcissistic “I want this now” demand without regards for responsibility, consequences, or societal ties.

If she had, she probably wouldn’t have been sitting in front of me that day.

Despite my “Matilda-like” attempt at somehow emitting my disease from my body and throwing it into hers and then praying for a “Freaky Friday-esque” moment where we change life positions and I get the life I had hoped for and she gets her dream life (the one I just described), nothing happened.

She left, and I officially had the case of the “why-the-hell-not-yous.”

I admit, I get this far more than the “why mes?”

I do genuinely think my disease has a purpose, and I am certainly going to work it for everything it is worth, but on my bad days, I need to wallow angrily somehow, that wallowing is guided outward.

I try to keep the contempt quiet and not emit any sign that I have these feelings.

I really wish I could be this all-loving, all-forgiving saint.

I am working on it, just not yesterday, or any day or week when I have gotten another blow to my life expectancy by having another positive PET scan, needing another surgery, or requiring more treatment.

People don’t quite understand the wallowing, desperate sadness and anger that I am hiding inside, trying to control, that culminates into an all out “I-don’t-care-about- your-problems-your life-or-any-of-your-petty-complaints (because they all are)” attitude that I am trying to control.

I’m sure the attitude radiates off me, and unfortunately, unless you have great strength in who you are and self confidence in your personality, though I don’t say how I’m feeling outwardly, people certainly respond during my most difficult times.

They respond defensively and often by judging me, calling me names like “selfish,” “self-centered” and “self-righteous.”

Hey, we all have our flaws people, but I just have mine in combination with having to deal with a lot of issues.

Knowing this though, knowing I can’t be perfect but can do the best I can in light of my situation, and having friends and loved ones who stand by me no matter how unbearable I may be in response to how terrible I am feeling, makes life that much sweeter.

It’s sweeter because I know the depths of human emotion.

It does make me feel lucky, but on some of those days. . . . .


Heather said...

i wish i had some great words of wisdom or even better, the ability to make it all go away.

i do understand the "why not yous", sometimes they make me feel guilty, sometimes just mad.

i'm sorry that you are facing this setback.

Anonymous said...

Like Heather above, I wish I was able to find comforting words ... or like my parents, I could "kiss it & make it better." But sadly, I can't do either.

For what it's worth, I do believe you have every right to the why me's ... or why not you's ... they are perfectly normal.

Hill just know, that this old war horse is thinking of you & hoping you will not judge yourself too harshly for feeling the things that many of us have, for far less reason.

You are an amazing person Hillary ... & I too am really sorry to hear about this setback. I hope you find the strength to fight ... but regardless of what you choose to do ... know that I'm incredibly proud of you ... & I care.

Call me if there is anything I can do ...


Erica said...

ah yes, the seekers... they suck. i always wanted to tell them off when i got stuck caring for them. anyway... you're allowed to have bad days. don't feel bad for having them, maybe they'll help you enjoy the good days more.

know i'm praying for you and I think about you often. and i always say the same thing, we're always given challenges for a purpose. we may not know why right away, but eventually we figure it out. and you will make a huge impact on the fight against cancer with all the work you're doing.

andyson said...

I'm not posting much but still reading. I officially count myself out of the "yous". Because I've been there, done that and a handstand.

How's your hair coming in these days? I shaved my head, as promised and parts of it are refusing to grow in. And its more noticeable now.

Cancer treatment has given me permanent baldness - male pattern baldness. :(

Keep on keepin' on, and I'll keep readin' on.

- B