Blargle

Pain for me is a topic I am embarrassed about. Sad right?

Well… There is a stigma related to chronic pain and taking pain meds. The meds that people abuse and are addicted to. The ones that people would possibly want to break into my house to steal (we have cameras everywhere and they are in a safe, so don’t bother, please. Also, if you steal pain meds from a cancer patient, you have hit a new low). I have had pain medications stolen from me in the past, which also may explain why I worry talking about them.

I shouldn’t be embarrassed and it is a real issue that has to be faced when you have metastases in places that cause pain.

When I first started having to take dillauded around the clock for my lung and rib pain, I was super embarrassed. Now, lets add the fentanyl patch. When I was just taking Hydrocodone, it was akin to taking Tylenol.

The day they gave me the dillauded, HOLY COW! The embarrassment ran deep, now I had THE addict drug.

I begged and pleaded for physical and pulmonary rehab instead of pain medication, but life as a cancer patient doesn't work quite like that...and now I have terrible headaches and back pain to add to my list of well, pain.

On hospice, I kind of feel as though I am being yanked around a bit.

I have decided to start going back to my team of oncologists, especially since I found out about the brain and spine METS. If they continue to tell me there is nothing they can do, I will stick with hospice, but, if there is even one inkling of hope, one shred of medicine that will give me even one more year, I am taking it and running with it.

My oncologist, Dr. Orr, said I have Leptomeningeal carcinomatosis. Google’s definition of leptomeningeal carcinometastasis:


Leptomeningeal carcinomatosis (LC) is a rare complication of cancer in which the disease spreads to the membranes (meninges) surrounding the brain and spinal cord. LC occurs in approximately 5% of people with cancer and is usually terminal

Added note: I was shocked and tired when I wrote this, when you tell people you have terminal cancer on top of terminal cancer it is confusing. Leptomeningeal metastasis is a very tough form of lung cancer metastasis to treat. There are a few trials out there and more helpful that I am HER2+ in most of my mets – as that can sometimes help treating this kind of metastasis. When you have terminal cancer, the cancer eventually spreads somewhere that kills you. Brain and liver are top terminal places for lung cancer – now I have cancer in one of those places. So I already have dice rolled in tough places, but we are scared for the day it moves somewhere or somehow we can’t beat it back. This is one of those tougher places.




When you have a Type A personality you like to have a certain level of control and understanding of your surroundings. You like to have a plan. You don’t like to deviate from a sound plan when you know it will work. You don’t like surprises.

Cancer is the arch enemy of a Type A personality.

Disorder. Surprises at every corner. Plans that go awry.

Blargle.

I guess it doesn’t make a huge difference at the moment, but it somewhat makes a difference to the order I place things in my brain and my sanity. I had a good cry, threw a few things and took a deep breath. I don’t want surprises, I want to know where I have cancer, I want to know where I don’t have cancer. That ship has sailed.

My brain is trying to wrap itself around what looks like a lot more cancer in my body (to me). What some people call tumor burden… the more tumor burden you have, the steeper hill you have to climb to knock it back.

A long time ago I learned to listen to my body. My body hasn’t been telling me a good story the last few weeks and with the progressive pain in my upper spine and consistent pain in my hip, I might have just finally earned myself another PET scan.

I am hoping my body is a mean liar and that this is all cancer/seizure/IPF tired… sore… We beat me up a bit this past month.Who would feel amazing?

I also started to research immunotherapy trials. Why? Because that is where I hope cancer treatment goes. That and nanobots, but do you know how hard it is to get in to a nanobot trial (can you get into a nanobot trial? I need a nonobot trial…). So I have been thinking about taking a wild leap into really cutting edge research because it gives me the most hope and it gives me hope for people after me.

We had a conversation today with my chaplain about dogs knowing if you have cancer. They have actually done a lot of studies and trained dogs to smell cancer.Every since I have had cancer, I swear the dogs know. They get extra clingy, won’t leave my side, have to sit on me, sometimes just stare at me with creepy little doggy eyes (ok they aren’t creepy, they are cute).

Tonight, my mom and step-daddy are taking us out to dinner. They want to be as involved as they can, and who doesn't love going out to dinner? I am excited to get out of the house for a little bit. I slept so much yesterday. Today has been a little bit better. Still overwhelmed about the news I received yesterday.

I know I shouldn’t always attach explanations on posts like this but today I feel the need to. Whenever I post a dark piece I get many messages of concern (and criticism) from people. Sometimes they say “Lighten up.” Most often readers are worried. I want to say that these pieces capture only a fraction of the spectrum of feelings I have.

My days are not spent wallowing in sadness. When I need to rise to the occasion I do. It’s often easier for me to write about the world of the dark places though… in some ways I think those are the ones that need light the most. These words are often the ones which go unwritten and unexplored.

I always find joy in the small moments each and every day. 

There is shimmer in each and every day. Some days we just have to look hard for it, dig deep. And some days there is just a darkness overhead. I find that giving a voice to the those depths, shedding light on them, is important. There are many who live in this land. Today’s post comes from the feeling of doom that accompanies test results, that awful waiting period.

………………………

I wait for the burlap bag over my head,

Wait for the rope round my neck.

I wait for the chair to be kicked out,

The floor to drop open,

Snapping the rope’s length and my body with it.



This is what it feels like each time I drive to the office,

Head into the building,

Take a seat.



Usually I hate traffic

But when it slows my journey I find myself grateful these days.

Stretch out that time.

Make it longer until I hear words I don’t want to hear.



They are tricks, of course,

Silly childish games I play.



I turn on the heated seat and press my back against the core

Burning relief into my spine.

I am at war with myself.



I ready myself to smile, to say good morning,

To greet the office staff with a brave and carefree smile.

“How are you?” one will ask,

Letting the words roll off her tongue the same way

The lady with the Irish accent ringing up my groceries asks me

Without waiting for an answer.



I’m not fine.

I’m anything but.

There is no time for that, though.

It’s time for results and plans and tests and exams.



It’s time to steel myself again,

Stand up straight,

Pretend there is no fear,

No ache,

No catastrophe.



For minutes at a time this is how I get through the day.

I walk at a clip, slightly faster than that executioner with the bag and rope who chases me,

One step behind or maybe two,

Telling him

No.

Not today.

Just stay the hell away from me.

Just for a little while longer.

I think the word that most defines metastatic lung cancer to me is “uncertainty.” You have to figure out a way to live with it. My coping mechanisms are research and action. I can only hope these will serve me well.

I thank you for your support and encouragement this week.

Love you all and truly mean it and God loves you too,

Shanna xoxo

Here is the link to our Go Fund Me Page to help with medical and travel expenses: gofund.me/hope4shanna2016

Official blog Facebook page: https://www.facebook.com/shannabananahealthandfitness 

 

Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna