"But you look so strong"

"You look so good!"

"Your color is good," with a grin, "I can't believe how strong you look!"

I don't go out when I don't feel good. 

When you see me, you see me at max a 3 on the pain scale. Keep in mind, as someone who suffered from chronic pain before my diagnosis, a 3 is barely notable. I've taught classes with 3/10 migraines. I've tutored students or graded 50 papers with 3/10 pulled muscle in my less than healthy back. I've hiked up mountains with 3/10 for pain from my plantar's fasciitis.

I can't remember the last time I had a 0/10 day. Recovering from this most recent brain surgery has been a lesson in pain. All day, I hurt. My head. My skin. My joints. Everything. 

I can sleep through 8/10 pain if I take prescription painkillers. I was always so afraid of becoming a statistic, but I can barely function in my own home without warm blankets, a heating pad, and opiates to bring me back away from the higher end of the pain scale. Every day, at some point, without fail, I hit 7 easily. Some days I hit 8 and I don't know what to do with myself besides be angry for not being stronger. Be angry for becoming a statistic with my opiates. Be angry that the pain just. Won't. Stop. 

But it doesn't stop me. The Husband listens to me complain, but I can only let it get me down for so long. I assess my incision site, my joints, my neck. Strong enough for now; may as well take advantage while I can. 

I go out and paste a smile on my face. "You're so strong!"

You don't get to see my tears. My drug induced sleep. My frustration with a body that is not strong enough, not warm enough, not stable enough. My fear of tripping over my dog, falling down in the shower, bumping my head on the cabinets that are exactly the right height for my still tender surgical wounds. 

Before the coronapocalypse, I used to go out for coffee and read a book, comforted with the knowledge that The Husband would take me home as soon as I was ready to go, too tired to be out, feeling too much pain to paste on that fake smile. He would see the moment when my eyes stopped hiding the pain and start looking for an escape. 

3 out of 10 on the pain scale is barely worth a Tylenol. I can do anything at a 3.

You don't get to see me at a 7. The tears at a 10 are my secret. See how strong I am? 

More of the Ugly side of this Diagnosis

Through this entire ordeal, I have tried to look on the bright side of things.

Yesterday, the only bright side was at the bottom of the toilet bowl.

I started the six months of chemo, and suddenly, I was barfing over and over and over and over again. I hurled nine times within three hours. The same medication that I have been taking suddenly made me a puke machine.

I talked to my doctor (Reminder: Don't be Dr. Google!).

Evidently, this is not unusual when moving to this round of treatment, but they did want me to go to the cancer center for infusions. They pumped me full of fluids and anti-nausea medicine and sent me on my way. Nobody was worried, which was a good thing, because that helped me relax just a little in a very stressful situation.

This means, though, that I need to adjust how/when I take my meds, when/what I eat, and when I sleep so that I can figure out what my new normal will be.

My therapist once told me that she hates the term "the new normal." I have to say that I agree with her. Things are constantly in flux, swirling in the chaos that is life. We may become accustomed to one form of this chaos, but one thing is always for certain (especially with this diagnosis): Don't get too accustomed, because things are always just on the brink of change. We all have to be prepared for that, because the change may be positive, like a cool new haircut or it may be negative, like hurling for three hours in the middle of the night.

Historically, I've tried to be brutally open about my journey with glioblastoma. I have tried so hard to be more than just my diagnosis, but simultaneously, I have tried to explore and explain my journey, in the hopes that perhaps this voyage can be just a little less difficult or frightening for anyone who might be sailing through these stormy seas.

Full disclosure, though: I have NOT been 100% open about my journey.

You have seen my First Face. That's the easy one.

I have worked really hard to show you as much as possible of my Second Face. This is really challenging, because I am not accustomed to opening myself up to the vulnerability involved in being so exposed, especially when things get ugly.

The reason I have not been 100% open about my journey is because my Third Face needs the time to process information, to make decisions, to determine what kind of access my Second and First Face have to my innermost feelings that make me who I am. My Third Face is mine. This means that although I have been chronicling this journey, this does not mean that any individual person has a right to see my Third Face (or even my Second).

This journey is incredibly difficult, moreso than I let on much of the time. I try so hard to inject my own inappropriate and morbid sense of humor to this little piece of hell, because if I can't laugh at or mock my cancer, what can I do? But please remember, my Third Face is mine.

So there you have it. Opening up my Second Face is very difficult. But I think that it is important that people who see my First Face understand that, although I might make light of the situation, my Second Face is showing you that this is hard. Harder than you know.

How can you help?

By the numbers, again

In the last 127 days, I have been seen by a medical professional and/or hospitalized or treated with radiation 83 times.

I've completed 30 rounds of radiation.

I've taken 42 chemo pills.

I have felt like barfing 42 times.

I have actually barfed 0 times!

Yes!

I've lost or cut off 87% of my hair.

I have missed or forgotten to send 56% of the thank you notes that I intended to send.

I have cried somewhere between 18 and 97 times.

I have laughed so hard it made my brainhole hurt 37 times.

I have had at least 13 but not more than 130 panic attacks.

*Some of these numbers may be best estimates: I teach English, not math, and I've had brain surgery! What's your excuse?