logo
logo

“Eyes up, Rise up.”

ThinkSayDo

By :

“Eyes up, Rise up.”

That’s me. It’s not a googled image. It’s literally me.

No, radiation doesn’t hurt. It’s her side effects that are a real bitch. And chemotherapy comes with his own bag of tricks that leave you feeling like… well, I’m not quite sure yet, but they told me what to expect and I’ll verify it all for you in a later post. Here’s what I know so far:

“Radiation treats cancer by using high energy waves to kill tumor cells.” Copied and pasted straight from WEBMD because I still don’t really get it. When I go to radiation, I lay on a table. A big machine that has been programmed by my Radiation Oncologist (1 of my 3 cancer doctors) to target my tumor surrounds my face and neck and zaps me 10 times every day. It starts on one side of my head and then very mechanically (I can hear the head of the zapper moving directly above me) makes its way to the other side. I keep my pants and shoes on, but wear a Johnny up top. And I wear that mask. It keeps my head, my throat, my face and my upper body from moving so that the radiation zap hits the same exact spot every single time.   The picture above was taken on the day that I got the mask molded to my face. It was 2 weeks after Sam was born. Oh and the best part about this lovely “face wear” is that it GETS BOLTED DOWN TO THE TABLE. So the hard plastic is snug to my nose, eyes, mouth, cheeks, chin, and throat. And when I say snug, I mean suffocatingly close- thank God there are holes in it so I can breathe. And besides trying to suppress a cough (remember, I have a huge cancerous tumor in my THROAT), all I do is breathe. It’s a 15/20 minute process and I mainly think of 2 things: Breathing and little men who oddly look like Lego characters zapping my body and KILLING the cancer away. Ha… balance. Calm, soothing breath and killing with fire. The same friendly radiation techs are there every day. I’ve only been 3 times so far, but I already know them by name and that 2 of them have daughters.

I’m going to get open wound mouth sores that can coat my mouth and tongue, will break out on my throat and will go all the way down my GI tract. Already my saliva is thickening and turning into mucus instead of that thin, protective saliva that I had taken for granted for 36 years. I have a humidifier next to my bed to try and put some moisture back into my mouth. The sore throat that I’m going to have will be so bad that in my last meeting with a nurse, she highly recommended a feeding tube because swallowing will be an issue. I’ll be prescribed Percocet and whatever other pain medications I need to get through the physical shit storm. The skin on my throat will burn like a sunburn. My sense of taste will (hopefully only temporarily) be gone, and I may want to start eating with plastic cutlery because the only taste I COULD still have will be metallic from a metal fork. We all know that chemotherapy makes you nauseas, but I wasn’t aware of the constipation that will plague my bowels because of the 3 separate types of nausea medicine I’ll be taking. I’ve been warned of thrush in my mouth (they can prescribe me something for it), the enamel to wear from my teeth (I have fluoride to paste on them twice a day), and I may experience ringing in my ears and neuropathy in my hands and feet. I rinse my mouth 6 times a day with a baking soda and salt combo to clean it out as much as possible and balance my ph. I will temporarily lose my voice. That’s the sucker punch. I don’t know how long “temporary” is; maybe 6 months, maybe less, maybe more.

This week, one of my friends shared my fundraising page in a Facebook post. A “friend” of hers commented that chemo was evil and that I shouldn’t be poisoning my body. So to put her mind at ease, I’ll fill you in on the other ways I’m fighting this cancer: Reiki once a week, acupuncture twice a week, the power of prayer/light/positive energy, frankincense oil every 2 hours under my tongue, turmeric in any way I can and a lot of writing. Some may say that I should go on a cancer diet in addition to all of this… but eating will be an issue and anything that’s high in acid (opposite of high in alkaline) will feel like excessive torture. Any nutrients I can get into my body will be sufficient. On the plus side, I’ve got about 30 extra lbs on me from pregnancy, so I’m starting with a high number. The whole “this hasn’t happened yet, but will happen” warnings of what is to come is a little like staring down the barrel of a gun. I wake up every morning wondering will today be the day that it hurts?

Here’s the thing: I’m not complaining. No one needs to call the wahmbulance on my behalf. This is my story and this is what I’m going through. There are a million different people on a million different days who have gone through, and are going through a million worse situations than I am with this diagnosis and these physical side effects. I’m not riddled with cancer throughout my whole body, I’m not a prisoner of war, I’m not a child unable to defend myself- I’m a 36 year old woman with throat cancer and THIS is MY fight. Secondly, to the woman who posted that chemo is bad and that is was a shame that I’m poisoning my body- stop. Please, just stop. I know that it’s poison. I know that it may not work. I know that there are uncommon life long side effects that I haven’t listed here that I’ve signed off on. You may know more about chemo and cancer than I ever will. Maybe you’ve battled cancer yourself, or you lost someone because of a chemotherapy treatment. But you don’t know what it’s like to be me. You don’t know how hard it was to make all of these decisions in such a short period of time and to have a brand new baby to take care of. You don’t know what it’s like to be shot up with radioactive poison 2 weeks after giving birth to come home and not be able to be anywhere near your baby for 24 hours, or to pump out radioactive milk and throw it away only to be told that the milk source needs to be dryed up anyway. Honestly, just shut the fuck up.

I manage and wait tables at a restaurant. I’ve been doing it forever. The restaurant is my second home and in my blood. Last year, I walked up to a man sitting by himself and said “How are you?” He answered “I’ll have the cobb salad.” Of course, because of my “strong” personality, I thought he was either being rude or didn’t hear my question so I looked him in the eyes and said “But how are you?” And with that he stopped, pierced his lips and fought back quick tears. I said, “Shit. I’m sorry. You’re not good.” And he got up and left. I think about that interaction almost EVERY day. I’m such a jerk. But here’s the thing: you never know what other people are going through. We’ve all heard it a million times, but here’s your million and 1 reminder: Shut the fuck up.

Chemo starts on Tuesday. It’s an all day ordeal beginning at 7:45am for blood work. The actual chemotherapy takes 4 hours and then I meet with my Medical Oncologist (another of the 3), and then head down to the radiation floor to put on my mask and get my 10 zaps by the lego men. Every person I walk by in the Dana Farber buildings will either be battling cancer, or playing the “Mike role.” I try not to look down the entire time I’m there because I don’t want to disengage from the whole experience. I don’t know their stories. They don’t know mine. But we’re all fighting our own battles. Eyes up, rise up.

5 comments
  1. Jeff Karpowich

    I am not on any social media and have not seen you since I heard about this. I just want to wish you the very best and for you to know I will be praying for you and your family. Love and smiles. Karpy

  2. Ellen

    I am sending every positive thought your way. If anyone can do this, it is you, I am just sorry you have to.
    With love, prayers and all that is good.
    I will be here in the background doing anything I can.
    If you ever need a place to stay in the city you are of course welcome.
    XO
    Ellen

  3. Rosa Lee

    Think of me as another mom/friend to your sis, Kelly Rose. She and my son, Daniel, have this perfect little boy. Your little nephew, Joe, brings smiles to all our faces.

    Think of me too as your stalwart friend. I meditate at 1:20 about your little Lego zapper crew. At 1:40 I offered up a prayer of healing.

    I hold thoughts of you, your new sweet son and your champion partner to the light of grace❤️
    You are an amazing writer, my dear.

  4. Michael Mieyal

    You are in our thoughts and prayers. My father, a deacon has added you to his daily mass…hoping to extend the community of healing prayer in your honor. Be strong, be well.

  5. Michael Mieyal

    You are in our thoughts and prayers. My father, a deacon has added you to his daily mass, hoping to extend the community of healing prayer in your honor. Be strong, be well.
    Michael & Danny

Follow Jaime

jaimethinksaydo

%d bloggers like this: