“Please believe that one single positive dream is more important than a thousand negative realities.”
My last blog was in November. So much has changed since then. I have barely written in several months. Ahh to be back in the sun of sweet New Mexico or on the endless roads of South Dakota. There is an incredible difference in the views that I have in my life currently versus then.
i started writing this blog a couple weeks ago sitting in a hotel room in boston, looking out over mass general hospital. I could see the room i stayed in less than two months ago, after having a double craniotomy to remove two brain tumors. This surgery happened less than 12 hours after I found out my breast cancer had most likely metastasized.
I hadn’t been feeling well for awhile. I had been struggling with the worst headache of my life from the moment i woke up to the moment i slept. everyday i was taking tylenol, advil, muscle relaxers, percocet, valium, anything i could think of or had in my medicine closet to try and make it go away. I tried heat, ice, massage, cranio sacral therapy. nothing helped. I started barfing a lot. I was blacking out. I made a lot of excuses, it’s just allergies or a bug or stress from the surgery i had just had to reconstruct one of my implants, that didn’t really work. i tried everything i could think of except going to the doctor.
This is the large tumor
I love my primary care doctor but I was worried he was starting to think I was a hypochondriac. Since coming home in November from my cancercation road trip, I’ve seen him a lot, for various ‘scares’ as I call them. My friend said recently, “Remember when we were healthy? Me neither.” We laugh, because it’s kind of true but because laughing is healing, not just a veil we can hide behind when dealing with something traumatic, something really fucking sad.
two months after the headaches, barfing and blacking out started, the end of february at this point, my mom saw me curled up in a ball on the floor. she commanded me, because lets be honest i needed that scolding, “get in the car, we’re going to the emergency room.” I put on my coat and walked out the door. it was time and i knew it. once i was called in the doctor ordered a ct scan to make sure i didn’t have a bleed in my brain or a tumor for that matter. to be honest i felt like an asshole going to the er for a ‘headache’. i was scared they would think i was a drug seeker or just wanted some attention.
after the scan i saw the doctor walking towards my room and i noticed the tone of his skin, the emotion behind his eyes and i knew. he came in, shut the door gently behind him, paused and then i really knew. he said, “there’s a mass, two of them”. my response was, “are you fucking kidding me?” i don’t always say the most appropriate things. sometimes i don’t feel bad and sometimes, like this time, i felt bad. he was kind to me and i could tell this wasn’t easy for him, given the past medical history he was looking at. side note – I was supposed to leave for the trip of a lifetime horse back riding through patagonia in a few days.
the er doctor paged the neuro surgeon on call who refused to come in and see me because i was not an established patient. what am i supposed to do cut out my own brain tumors? i was pissed initially about his response but i believe everything happens for a reason and i get ‘policy’. i now feel grateful about this and have been told by several people who work for this hospital that “he’s an asshole and I’m better off.” the local hospital transported me by ambulance to mass general hospital where there was an entire neuro team waiting for me. they are gods, mini 12 year old, pretty gods, just like grey’s anatomy.
Back to the tumors, which the gods tell me need to come out asap. i knew they needed to come out but i still said, “like right now?” i was scared. I decided to name them Hannibal and Clarice while waiting to go into surgery. I have a strange sense of humor sometimes and it made the doctors and nurses laugh and my mom and i. When I first saw the images of the largest tumor in my frontal lobe, which was about the size of a lemon, there was a black space in the middle of it and my first thought was “my tumor is cannibalizing itself”. i instantly thought of Hannibal, which still surprises me given my hatred for horror movies. The second tumor was small and cute and hanging out in a little space about my right ear. Clarice! I was also on a lot of pain meds aka party drugs as the anesthesiologist called them. 😉
One of my first questions for the surgeons was “do i have to cancel a trip that i leave for in a few days?” He looked at me like he wasn’t sure if i was kidding. it was an obvious answer. I spent a year preparing for this trip and i had already packed! i was also going to have to cancel another trip i had been planning to colorado. i had registered to volunteer at a fundraising event for the First Descents. It also meant I was going to miss out on seeing one of my favorite people, Tig Notaro perform. F you brain tumors. couldn’t you guys have waited another month, or 50 years.
after the surgery i was in the neuro icu department for a day where i barfed a lot, drank more ginger ale than any human ever and apparently kept telling my mom i wanted bacon and french fries…party drugs. the pain of having a jigsaw cut open my skull was pretty horrible. It took about 50 staples to put me back together. by the end of the first day i had two incredibly swollen black eyes. i couldn’t stop looking at them. i started to realize what had just happened the night before and what it all meant. i spent the next five days on the neurology floor of mass general hospital.
my days there were filled with mri’s, ct scans, bone scans, lab work, medication every four hours, insulin shots in my belly because the steroids were pushing my blood sugars too high. dilaudid, dilaudid and more dilaudid (pain meds), oncology consults with breast oncology, neuro radiation oncology, neuro surgery, physically therapy to make sure i could walk and climb stairs ok. every single person that i encountered there, that took care of me, was fantastic and kind and the best of the best.
i had a couple weeks at home before my first follow up with the surgeons and new oncology team at mass general. two weeks of having to wait for the final pathology. two weeks of trying to manage the pain of a double craniotomy. mom and i had been told by the doctors that it was very likely these brain tumors were the result of the breast cancer spreading. we were told that it’s very ‘unusual’ for the brain to be the first stop for a breast cancer metastasis. breast cancer typically spreads to the liver, lungs and bone before the brain. my new doctor’s feel as though there may be cancer lurking somewhere else, besides the brain, but isn’t showing itself just yet as my body scan was clear.
follow up treatment after the surgery was ten cycles of brain radiation and a very strong conversation about me really needing to go back on the low dose daily chemo, that i have been rebelling against since last year. i will have mri’s of my brain every two months and ct scans of my other organs every three to six months. the radiation treatments passed by quickly and uncomfortably. the side effects were manageable and my hair is now falling out but only on the right side of my head. I’m used to this part although it doesn’t make it any easier to be back in head scarves and hats.
in order to have the radiation i needed a custom mask made to fit my face. my face would get put in this mask and strapped down to a table where i would lay for 20 minutes of treatment. the technicians let me pick a pandora station to listen to and covered me in warm blankets as i would try my best not to have a panic attack with a little help from my friend, xanax. i cant help but feel like jason from friday the 13th with my creepy mask!
on most treatment days i actually chose to listen to whatever the patient before me had on. this started after the second day when i forgot to have the station changed. as treatment started i hear marvin gaye singing ‘let’s get it on’. i instantly wanted to laugh but couldn’t due to the restrictions of the mask. it made me smile and it distracted me from the laser beams being shot through my brain. the next day i mentioned it to the techs and we all had a good laugh. from that day on i listened to the motown station for every treatment. sometimes it’s the little things that make all of this so much easier.
while listening to the music i would think of these other patients and wonder what they maybe thought about during these minutes. were they sad, scared, happy? i wondered what types of lives these people had before the big C. sometimes the techs would remind me to think of my favorite things which is travel, my dog, friends, family, beaches. somedays it was too hard to go to the beach in my mind. somedays i went to a darker place. my mind travels to places i never thought i would visit at 36. i think about how cancer has picked me apart little by little over the last couple years. i think about how I’m having this treatment knowing my insurance company denied it for being ‘medically unnecessary’. i was just starting to live my ‘new normal’ life, which all of us cancerful’s understand.
a lot of people have asked me about my prognosis and while i understand my doctor’s hesitation in discussing this, the numbers are out there. this is what I’ve been told by the doctors as of today. they believe there is a 70-80% chance the tumors will return in my brain despite treatment. they believe there may be cancer elsewhere but we cant see it yet. i am now considered to have an ‘incurable’ disease, or metastatic breast cancer or stage IV breast cancer with mets to the brain. as far as life expectancy, research shows a 20% chance of being alive in three years or a 10-14 month survival. i try not to even think about these stats right now. I’m still in the surreal feeling phase.
there has been a lot of crying, a little anger. some days pass by and I’m fine, which probably means I’ve stayed busy distracting my thoughts. there are some days where all it takes is a look at my dog, my beautiful munchkin and i cry. there are some days i don’t do anything productive. there are some days i still see beauty in this world and in all the people i love. there recently came the day that i was well enough to unpack my suitcase from the trip to patagonia i cancelled. i ended up sobbing on the floor of my closet for an hour. i think it’s safe to say i haven’t even begun to process all of this and that coming to terms with another ‘new normal’ is going to be incredibly difficult.
I’ve been thinking a lot about a memoir i had just finished reading before my C came back. It was written by Eve Ensler, In the Body of the World. she writes with brutal honestly about her experience with her own cancer. it is raw but truly validating for me. i love every word, every sentence in her book, right down to the index which is so appropriately titled scans. She makes me think about why and what made this happen? the, was it this or was it that hole. was it my genes? was it the antibiotics? was it the mountain dew and mac and cheese phase i had in junior high? was it when i fake tanned before the high school prom? was it the chemo? was it the air…? Eve describes it perfectly when she says…
“ having cancer was the moment when i went as far as i could go without being gone, and it was there, dangling on the edge, that i was forced to let go of everything that didn’t matter, to release the past and be burned down to essential matter. it was there i found my second wind. the second wind arrives when we think we are finished, when we cant take another step, breathe another breath. then we do…”
so, i ask myself, now what? my next brain mri is less than three weeks away. i try not to think too long about it. i will meet with my doctor that afternoon and for now just hope it’s clear. my understanding is that if and when the brain tumors come back, if they’re small enough, i will have more radiation. i will try the daily chemo pill again. i understand that it’s only less than two months since the surgery and that it’s a little early to tell how the next year will go. I do know that everyday I feel better physically (now that i don’t have Hannibal and Clarice and 50 staples in my head ;)). I know that i must be progressing if I’m writing. I know that i have a new mass on my liver and will have another mri later this month to figure that out. I know that this beautiful weather is coming at the perfect time.
I want to be outside. I want to feel and see the green grass. I want to go back to yoga. I want to keep traveling as much as i can. I know I have an incredible support system and people who love me, near and far. I know Im a little scared. I know that this fear wont stop me from moving forward.