I got a hug from one of the nurses today in celebration of The Return of My Hair. People who have seen me bald tend to get very excited when they see me now. To me, who sees myself in the mirror everyday, it's not changing or growing fast enough. But, it IS growing and that is pretty rad.
I could tell based on our conversation (this nurse just takes my blood and checks my vitals, but doesn't really know anything about my "case"), that she thought that The Return of My Hair meant that I was done with treatment and all better and healthy. Oh how I wish that were the case.
Anyway...I have learned over the past few months, that most people, who haven't seen me in awhile but know I am battling cancer, don't know what to expect when they do see me. From these encounters I have learned that many expect that I will "look the part" of a cancer patient. That I will be sickly pale and sickly skinny. Some even picture me in a hospital bed, hooked up to tubes and beeping machines. This is far from the truth. With the exception of being bald (well, now just butch lesbian buzzcut (not that there is anything wrong with that)), I still look pretty much like...uh....Vashni. Post-prednisone fluffy Vashni. I am actually quite plump (much to my dismay) and my cheeks are round and rosy as ever.
I am told that oncologists are the one type of doctor that are happy when their patients don't lose weight and that a well-nourished cancer patient has better odds of surviving...so even though I cringe each time I step on the scale at the doctor's office, I suppose that I should also be silently celebrating that my weight remains at a steady and hefty number. Likewise, I have been told by friends and family members that they secretly celebrate that my weight isn't decreasing at all. :o)
One thing that you can't really see when you look at me is that I am in pain. A lot. Like all the time right now. It is frustrating and defeating and all around a big stinkin' suckfest. And when I am in pain...my positive hopeful mindset spirals pretty low. Swings hella far in the other direction, in fact. Like, morbid self-deafeating thoughts at 3am and intermittent cry fests and old people noises coming fromst my lips. Not pretty.
Some of my pain is residual from the liver biopsy. I have thought bad evil thoughts about this doctor for the past week. I realized, in addition to causing me all this pain and trauma, his bedside manner and general demeanor started my negative spiral of this past seven days. His attitude seemed to be "you have stage IV cancer...what hope do you have of making it" and "just be quiet and let me carelessly stab your liver cause you're gonna die anyway." Obviously, he wasn't saying these things...but this is the mindset that I left that hospital with and I have been shaking it ever since.
I have drugs. Cause one thing I have also learned in the past few months is that when you are a cancer patient, you can pretty much get your pale skinny hands on any kind of pill you want (I even had an offer from a fellow cancer patient who wanted to hook me up with some weed). But, I am reluctant to take all these drugs. Narcotics especially. The last thing I need on top of cancer is an even more toxic liver and a drug addiction. And, I was also thinking (in my altered pain-induced mindset introduced during the above-mentioned liver biopsy) that they think I won't make it either and they just want me to take these drugs so I can be comfortable until I die. Sigh. Yeah...I am revealing some pretty dark and disturbing notions that have been circulating my brain.
Anyway...it turns out that in my reluctance to suppress my pain with pretty white narcotic pills, I was doing the narcotic thing all wrong. I would take one here or there, but it never really touched the pain. I am now on a "schedule". It has to build up in my system and then I need to stay on top of it before it comes back. Already, its working. Who knew?!
I also saw my therapist today. She made me realize that instead of focusing on and repeating the phrase "I don't want to die", I should really be trying to focus on and repeat the phrase "I want to live". Which is true, peeps! I WANT TO LIVE. I SHALL live. My time is so not up yet and I will not let some stupid liver-poking surgeon make me think or feel otherwise. So, yeah...it's a simple shift but a big one and I am gonna go lay down in my narcotic coma and repeat to myself....I want to live.....I shall live....
Peace. Love, Vashni