Isn’t there someone more qualified?

Surely you jest

The thing you learn when you start getting into the serious medical illness realm is that there isn’t really a right way to do things. You have a choice about how to proceed. Having a choice when it comes to your own health sounds like a good thing, right? Let me tell you, Dear Reader, I have never felt more hopelessly under-qualified in my life. It didn’t help matters any that my case is “rare.” If there is ever a circumstance when you don’t want to be special and unique, it’s medically. At this point I had Nuerosurge 1 and 2 saying they weren’t sure what this is and that we should wait on some pathology report to come back in case this was an infection. They were still very hesitant to go poking around that deep in my brain. Obviously this was hard to argue with. But then, I had another fairly renown neurosurgeon (The Math Tutor) who thought this was definitely a tumor, possibly a Glioma and 5 times larger than what the scan was showing. He wanted to do the parascopal (needle poke) biopsy. Then there was Dr. McKnifeskillzz, also fairly renown, who also thought this was a tumor, though not some ginormous Glioma, and who recommended a craniotomy (full-on open brain surgery) to go in and remove the tumor, or as much of the tumor as possible. Then there were other doctors, like my General Practitioner who questioned the wisdom of any brain surgery at all.

“Deficits. My GP said. “Like the ones you have now, but more severe…and permanent.”. “So you don’t think I should do any of the surgeries?” “I’m not saying that. What I am saying, is that you shouldn’t feel pressured to do any of them. You get to decide.” He paused, “Look, Surgeons always want to cut. Its what they do. You need to consider your quality of life. You have some deficits now, yes. But you are overall healthy.”

But I did feel pressure. And it didn’t feel like I “get” to decide. It felt like I “have to be the one who” decides.” But I didn’t want to be the one who decides this shit. How the hell am I supposed to decide? What the hell do I know about brain tumors and brain surgery? Nothing. That’s what. Not a God Damn thing.

Surely you jest sir!? There has to be someone more qualified.

Isn’t there some sort of Official or something? Someone who makes decisions like this? Someone ho handles these sorts of things?

But there isn’t.

Basic acts of human kindness

During this time, while I was still trying to decide what I was going to do about all of this, I went back to work. A colleague we’ll call her Cara, a young woman about my age, approached me and informed me she has a brain tumor. Has, not had. Cara explained to me that about 7 years ago she had experienced a terrible episode of vertigo that caused her to fall over on the street. An MRI scan revealed a brain tumor, or what was likely a brain tumor. She explained to me how the neurosurgeons had wanted to operate, to go in and biopsy or cut it out. But she hadn’t felt comfortable with the risks associated with brain surgery. Can’t blame her. After all, it isn’t exactly a safe way to pass the time. Any sort of “whoopsy” during brain surgery tends to have permanent and catastrophic implications. It is possible to go in one person and come out a completely different one, maybe not even a person, more a vegetable. Cara said she had found a neurologist, (different from a neurosurgeon). She said this neurologist had been a “good fit” for her. He had ben calm, methodical, and educative. In the end, with his guidance, she had elected to forgo brain surgery all together. She did neither the parascopal biopsy nor the craniotomy. Instead she elected for a “wait and see” approach. Initially this had involved brain scans (MRIs), every few months, and now, seven years later, she had one annual MRI. She said there had been no change or growth in her case.

“It’s still been hard.” Cara said. “I’ve had to come to terms with my own mortality, and not really knowing what this is. But it’s been the right decision for me.”

She provided me with her neurologist’s name, and then before I knew it, she had cc’d me on an email to the guy. In Cara’s email, she stated that she wanted to give up her next appointment, and requested that I take her place the following week (This neurologist was busy and hard to get in to see). This was her annual appointment to go over her latest brain scan. This was one of those moments for me, Dear Reader, where the kindness and care that other people have shown me, became almost too much to handle and comprehend. It was hard for me to take for many reasons, one of which is that I questioned whether I would do the same for someone else. To give up her appointment meant postponing a discussion on the latest results of her MRI- an MRI, the purpose of which was to determine whether or not some mysterious mass was growing inside her with potentially deadly effect. I felt that I could not accept this from her. But as it turns out, I was projecting my own fear onto her. I honestly can’t recall what she said to me about this, but she just didn’t seem to feel the same way about it as me. I don’t know what it was/is for her, but after 7 years, the uncertainty must just be something she lives with. Even so, I remain in awe of this selfless and compassionate gesture from her.

Cara’s neurologist actually ended up calling me that same evening. I think Cara must have given him my phone number. He had already seen my MRI and all my tests. He was at the same hospital as Dr. Mcknifeskillzz, (who I was still considering), and this gave him access to all my records. Cara’s neurologist informed me that he would not recommend the same “wait and see” approach, that he had recommended for Cara. He said there was a major difference between Cara’s scan and mine. While her scan had revealed a tumor, there had not been much indication of activity around or within the tumor. In my case, he said, the scan showed a bright white “hot spot” indicating A LOT of activity. This, in his opinion was not a “slow growth” tumor. This was not a tumor that had gradually developed and just been there for a number of years. Instead, he was concerned that this was a rapidly growing mass that required more immediate and aggressive treatment. I told him about the various neurosurgeons I had been to see. He knew them all. He told me that Dr. McKnifeskillzz was “as good as it gets.” I thanked him for his time in calling me. He didn’t have to do that. It wasn’t an official appointment. He had simply chosen to do it out of…I don’t know what: the goodness of his heart, kindness…I don’t know, just like I don’t know what led Cara make such a selfless act with me. When I later wrote her a card thanking her for this, she immediately texted me saying while I was welcome, she didn’t feel it was necessary for me to thank her for “basic human kindness.”

So the decision was still in my hands. I felt a little more armed with information thanks to my conversation with the neurologist. Still, I didn’t want to make the decision, and tried to put it off. Something was happening though, that was going to force me to choose. My vision was getting worse. This could mean only one thing: the tumor was growing. That’s how life is- even when you think your just sitting there procrastinating, you’re still on the conveyor belt of time, being continuously hurtled forward regardless of whether you take any direct action or not.

When that fails: Torture

Speaking of time, It’s time to step back in time a moment and tell you how my torture began. It came to me in the form of a diminutive Chinese woman in her mid-sixties, I’m not kidding.The first time I met Angie, it was over a year before any of this happened. Angie practices the ancient Chinese approach to healing known as Reflexology. Reflexology is is based on the understanding that different parts of the body such as your brain, glands, and organs are mapped on the foot. Disease can be detected and in some cases, healed, through the use of acupressure on these areas. For example, an area on the arch of your foot corresponds to your liver, and inflammation and pain in your arch, revealed during a reflexology session, indicates your liver is in distress. Now, if you Google Reflexology, you’ll see various things written about it. Some will describe it just as I have, likely in greater detail. You’ll also see articles indicating that scientific research has failed to find support that reflexology is effective. I’m not here to argue one way or the other, that reflexology is effective as a treatment for brain tumors or cancer, or anything. Likewise, I am also not here to argue the failures of western medicine to treat cancer. I’m not here to recommend anything to you. All I am here to do is tell you about my experience with the most terrifying thing I’ve ever faced, and utilizing Reflexology to face it is part of that experience.

Angie says the Universe brought me to her, and she she may be right. But if that approach to thinking about life isn’t for you, don’t worry, I can tell it from a slightly different perspective: My good friend CD, introduced me to Angie. approximately one year ago. CD had started having some physical issues: fatigue, getting super cold when we went surfing. He just didn’t feel right; something was off for him, so he went to the doctor. The doctor ran some tests, as doctors do. Guess what? The doctor tells CD that his kidney’s are functioning at 30%. Then they discover the problem is even worse- CD’s only got one kidney. The doctors starts talking dialysis. CD was not even 50 years old. So, staring down the cold hollow barrel of dialysis for the rest of his life, maybe even a kidney transplant, CD starts getting weird. Figures he’ll try something weird suggested by another friend; he starts going to see Angie. Within 3 months, doctors can’t find anything wrong with CD’s kidney functioning. Nothing. Three years later, he’s still fine. Still see’s Angie every two weeks. Who brought CD to Angie? I know what Angie would say.

As I said, the first time I met Angie was a year before all this began. CD had brought me because he wanted to see me writhe in pain. He’s a good friend. Angie took ahold of one foot, smiling at me,

“Feet never lie.” She began to press on an area of me foot. “Ahhhhhhoooolyshit!!” I no joke came out of the lazy boy chair in which I had seated myself.”Ohshitballsshit!” One’s words have a way of stringing together into a single long profane streak when Angie gets ahold of one’s foot. “Hmmm,” Angie pondered, “Very painful. She touched other areas of my feet. “Yeeeeeowwwweeeeee-shit! I panted. This is all a year before my brain disaster, mind you. “So emotional.” Angie says sideways to CD, who was sitting nearby, laughing at my pain. Angie began to touch and rub the inside of my arch. “Ahhhh Fuck!!!! I shreaked again, pulling both of my feet up to my chest away from the little sadist. “What the hell?” “That’s your pancreas.” Angie said seriously.” This very painful for you. You like sugar?” Eat lot’s of sugar?” “Maybe,” I managed, willing myself to give her back my feet. “You need to stop eating so much sugar. I barely touch here; so painful. You will have diabetes. You have diabetes?” “No I don’t. OW-SHIT-DAMN!-HOLY SHIT! I yelled. “Sorry.” “That’s ok. You yell. You swear. Its no problem. That was your liver.” “Everyone yells in here at some point.” CD says, laughing, delighted at my agony. My friend. “Like this? Like me?” My voice, an octave higher than normal. “You are very emotional; so painful.” Angie rubbing on my inner arch again. There is a bump. You feel? I think you need to stop the sugar. So painful for you, this is not good.” “I’m not a big sweets guy. Not out of health reasons, I’m just more into salty, fried, savory food. Bacon. Yeah, I like bacon.” “You drink, though?” More a statement, than a question. “You drink alcohol.” She already knew. “Er, yeah. Probably too much.” “See.”Angie nodding to herself. “Sugar. How much you drink?” “Uh, two, three glasses of wine…at least.” “Every day?” “Yes… sometimes a whiskey as well. Maybe four drinks, total…” I lied. “This turns to sugar in you. Very bad for you. You come see me. I clean you up. Your body is very toxic I think.”

I lasted through twenty minutes of what I now know was very mild Reflexology with Angie. I paid her and said I would think about coming back. I had no plans to come back, not so much because I didn’t believe in it; or didn’t want to pay, but more because of the pain. That shit hurt! But I was a little worried by what she had said she “saw” in my feet. Truth is, I had already been a bit worried about my alcohol consumption, and my shitty steak-pizza-and-cheese-and- more-pizza-and-hold-the- vegetables-thanka-diet.

I could now describe in detail to you, how my second meeting with Angie went, but why bother? It went exactly the same. The only difference was that this second meeting occurred a year later, after I was already in big, BIG trouble. It was just as painful, but now I was really scared and when you’re really scared, you’ll do and try some weird shit, including getting stabbed in the foot with a stick. This isn’t the reflexology you may have seen before, the kind that basically looks like a nail salon with a bunch of ladies massaging your feet for half an hour. This is agony, crawl-out-of-your skin torture. This is a whole other animal. My relationship with this woman will change my life. But more on the little foot sadist later.