Being Rare

Sometimes I feel forgotten. My friend Tara wrote a blog a few weeks back that really resonated with me. She wondered how people with rare cancers felt during all the hoopla around breast cancer and the fact that it gets a whole month dedicated to it. 

For me, I am not even close to getting a month; my cancer isn't even on the map. Aggressive Angiomyxoma (AA) – not to be confused with Alcoholics Anonymous – has anywhere from 150 to 250 reported cases depending on which sources you read. When I say reported cases, I mean EVER, IN THE WORLD. Digest that. The chances of me having this are untraceable. For me, the worst things about being rare are: I will never get a month and will likely never even get dedicated research, doctors don’t know what to tell me and often turn to Google – I kid you not, and I don’t look sick so people just have no idea what I’m going through. People can also find a way to empathize with you if you have breast cancer or prostate cancer because their mother, brother’s cousin or friend has had it. But, “Oh, hey I have Aggressive Angiomyxoma, a soft tissue sarcoma,” causes someone to glaze over and give you that I-am-trying-to-be-sympathetic-but-I-don’t-know-what-the-hell-that-weird-thing-you-just-said-is-face. I don’t have a bandwagon to jump on. I have to blaze my own trail, but heck I AM a mother friggin’ trailblazer, right?! I tell my mom and dad all the time just how special I am. :) They got a rare ass gem.

I pride myself on looking fab, even when I have been balling my eyes out right before walking into work. I always say, “When in doubt, look fab.” Yes I walk into work every day with a smile on my face, but am I fighting a big ‘ol battle? Heck yes. Here is a glimpse. One morning I started sobbing because I saw little kids (one was an adorable blonde muffin with pig tails) walking into the day care across the street (and I probably can’t have kids). One morning I was hyperventilating because I am 27 and need to go on bone loss medications. One morning I was coughing to see if I felt a little more pressure in my left butt cheek because I had a weird poop that morning – so was Frank (the tumor) bigger? One morning, probably about a year ago, I finally got myself to say the words I have cancer in my head – took about two years. Would anyone know about these mornings (aside from my family who I likely called sobbing)? NOPE.

Rare on my friend, rare on…

We Rewrite Our Own Strength

Yet again, something my Soul Cycle instructor said stuck with me. Before going home for the holidays (yay!) I decided to do an early morning Soul Cycle class with Sal. The regular classes are normally 45 minutes, but this was the one hour class, called Soul Survivor. Well, let me just say this survivor was souled. It was so incredibly hard, but amazing at the same time. The feeling of pushing yourself to do something you never thought you could is indescribable. As the class got harder and harder and we were about 15 whooo’s in, Sal said, “Keep going, keep going! We all rewrite our own strength.”

The next couple of days I could not stop thinking about what Sal had said. I don’t think he – or I – realized how profound that statement was until I really thought about it. I have rewritten my own strength dozens and dozens of times. I went from hating needles, to you have a cyst the size of a baby’s head in your abdomen, to you need major surgery, to oh wait, it’s cancer, to you need another surgery and another, to it’s all gone, to oh, wait it’s back and its huge…

There are so many things that go on in your head as you deal with an emotional rollercoaster like this. To be honest, it is impossible to process all at once and fight or flight kicks in. (Then months and years later it all starts to hit you, yes this is PTSD.) But what I now realize is before this all happened, I was not as strong as I am now. As the punches in the gut kept coming, I kept rewriting my own strength. There were times when I felt like I had no emotional energy to even react to the next punch, but I think I was just stronger – or at least I hope. The girl that once hated needles now doesn’t flinch for a blood draw, or a foley post surgery, or an epidural for pain management, or living with a tumor every day.

Although every cancer patient has many, many rewrites, it doesn’t mean we don’t get tired, frustrated, feel defeated, and need to scream and cry it out.

***

I went to visit my mom at school yesterday and saw her friend Toni L. She looked beautiful. Her hair was done; she had cute boots on, a bright sweater and a pretty scarf. Oh, and a smile, despite the fact that she was holding her left arm because of the cancer in it, and the pain and swelling she is dealing with. This woman has had so many rewrites, my god. Her and I chatted for a bit and she seemed in such good spirits – I just marveled at her – all of her. She was telling me how she was starting the trial the next day and she just hoped it worked, and that she didn’t lose her hair. She said, “I know it's vain but…” I said, “Oh my god, it is not vain!” It’s amazing how us cancer patients still keep so humble. She also said that her nurse, who she loves, told her that she has much less cancer in her body than a lot of other patients. That really gave her – and me – something to hang onto. Her fight is not nearly over; she is just going through another goddamn rewrite. Is it the most un-fucking-fair thing in the world? Yes. But will a bright light like her ever give up? Never.

Toni’s Facebook status the other day was about how blessed she was this holiday season. Damn…she is the rewrite queen and I am just a princess (tehehe) living in her city, inspired and encouraged by her every day.

The Place We All Go…

When you are fighting a life-threatening or chronic disease you have to find a way to keep the faith…and that is what everyone around you is coaching you to do. “Stay positive,” or “Keep your chin up,” or “Things will get better,” or “You deserve to be happy.” (Sometimes I want to smack them across the face and say, chill with the positive crap! I need a god damn minute!) But when you see someone you know and love going through hell, and more hell, you think, why do I deserve to be ok?

When my Soul Cycle instructor pushed us more and more tonight and said fight for what you deserve, break through! I pedaled harder and harder, but I could only think of my mom’s friend who is fighting as hard as she possibly can and her cancer just keeps spreading.

Her name is Toni L. and she works with my mom. She is an English teacher at a Junior High and my mom is the school nurse. My mom and her share an extreme bond because of her rare breast cancer and my rare sarcoma. Toni always asks my mom about me and Frank (my tumor), even when she is pale as a ghost and thin as a twig from the chemo. There is no other way to describe Toni other than she is remarkable.

Toni has gone through multiple rounds of chemo and clinical trials; some of which kept the cancer at bay for a while, but she always knew the cancer would eventually outsmart the drugs. That horror became a reality a couple of months ago and the cancer has spread – even into her arm causing her chronic pain. She is now faced with the decision of another round of chemo or a clinical trial. Which will work? If she chooses chemo and it doesn’t work, she may not be eligible for the clinical trial anymore. If she chooses the clinical trial and it doesn’t work she will think she should have gone with the chemo. Impossible decisions.

So as I powered through the last song of my Soul Cycle class, and Sal (my favorite, adorable instructor) yelled at us to break through that wall and fight, I couldn’t help but think, but Toni is fighting the fuck out of life and she is still falling down over and over again.

So how do I keep the faith if wonderful people like Toni are hitting a wall over and over and over again? I really don’t have the answer, but know we all have to just…keep…going. And all I can do for Toni is HOPE and PRAY.

The place we all go…