WBR: Pixilated blue and other weirdness

Last Tuesday, I started my 20-round regiment of whole brain radiation. It is, thus far, one of the weirdest treatments I've undergone.The side effect so far include:

Instability - a.k.a. walking around like a drunk person. Seriously, I feel like I've had a few beers followed by rowdy tequila shots. All the wooziness with none of the fun.

Weird headaches - These headaches are not constant headaches, but the sort you get when you have the flu or a sinus infection. Sometimes when I go from sitting to standing, or from lying on my back to my front, a wave of pain travels into my head, increasing in intensity, and then slowly subsides. One of these was so bad that I threw up afterwards and the radiation oncology intern made me go to the ER (brief stay, for CYA purposes, I'm almost sure).

Fatigue - a little in the evening when I get home from my treatments. Not too bad, yet.

The process itself is weird, too. You do see a blue light when you're being irradiated, in a circle, not solid color, but pixilated. And you do smell a sort of bleach-y smell (it could also be a burning smell, but don't like to think about that - ew.

The closest representation I could find
the for pixilated blue.

I am still "myself". I'm still able to handle problems at work and KB swears that having brain radiation has increased my sense of humor, which is nice because making him laugh is one of the joys I have in life.

I still have my hair, but will be shaving that off tomorrow to save on the messy natural fall-out (Get the radiation reference? Yuck, yuck).

I have a lot of support here and am thankful to all the friends, family and strangers who help to hold me up during those times when I just want to curl up into a fetal ball and let go. It has truly been a turn around for me. I used to think that  people were such jerky things, but you have all restored my faith in human goodness. Thank you, thank you, thank you.

Musical Theme for Whole Brain Radiation

Today it begins.

Reflections, Reconsiderations, and Eating Crow

Recently, I found out that I have 30 spots of cancer in my brain and that they are growing – slowly – but still growing.

My option?  Whole Brain Radiation. The queen bee of things I’ve been dreading and hoping that I would never be asked to consider. I used to believe that if it ever actually became a thing that I had to do, I would absolutely refuse and accept death.

Life is funny, the way it works to make you feel like a boob.

In the recent past, and in this blog even, I have spoken about people who take horrible treatments and who fight to the bitter end as if their decision was stupid. Well, I can say now that that came from a place that was puffed up, prideful,  terribly short-sighted and not at all compassionate.

The truth is that when my reality involves and “okay, you can go through potentially horrible treatment, OR you can die in fairly short order in a horrible way,” I choose the potentially horrible treatment that terrifies me. Not because I am brave, but because I am afraid. Going through treatment I believe, although billed as the nobler and braver choice, is truly the opposite. Saying no to treatment and facing death – that’s absolute bravery.

I hear this song in my head (totally unrelated to the tumors):

Cowardly, cowardly custard!
Can’t cut the mustard!

 

 

So now I eat my crow. I can’t not do it - the radiation. I’m not ready to die yet. So I understand now. Why people keep seeking treatment. They’re not ready, either.

At what point (if any), I will be ready, I don’t know.

In the meantime, WBR, here I come.

Mood for the Day

A Picture is Worth 1000 Words

God and Coincidences…or are they?

In the past, I have been a doubter. Although I have deep faith in God and that he has infinite love for every person whether they believe in him or not, when something coincidental happens, I am more and more likely to take a second look at God’s hand in the matter. Some coincidences are TOO coincidental.

For example, last Monday morning before my scan, I was telling KB that I was feeling low (actually, he told ME I was feeling low after hearing me sighing over and over and seeing me sit on the (closed) toilet seat with my head in my hands for an unusually long period of time.). I told him that I was feeling very isolated and alone, and having a bit of a hard time coping at the moment. We both know that it comes with the cancer territory.

So I’m going through my morning in this pre-scan, depressed fog. I go to my appointment, go to the changing room and change out of my clothes and into my two dressing gowns (one open to the back the other open to the front). I grab my barium smoothies and head out into the waiting room area and I almost bypassed the one with three women talking animatedly, but decided to sit with them.

They were all talking about cancer. All three of them had cancer (or had had cancer). One had recurrent breast cancer and was now stage IV, one had a sort of muscle sarcoma that had recurred and was not stage IV, and one had had bone cancer but was there to support her friend who had the muscle sarcoma. Once I heard what their topic of conversation was I piped right in and started asking questions and contributing my experiences.

It was so spontaneous. Genuine. Raw and real.

I’m not sure if you tried, you could repeat the experience.

Anyway, we all had our scans and parted with kind words. When I left, I left my dark clouds behind, too. I felt deeply peaceful.

Now the doubter in me says, this was just a happy coincidence. My faith tells me that, just as we lose no hair without God being aware of it, God meant for me to be there, to feel the support, to know that I am neither alone nor isolated.

God’s keeping tabs on me.

And he’s keeping tabs on you, too.

God’s peace.

Blessings

I can say it no better. 

Shhhhhh....

listen.