Thursday, September 10, 2020

Being Here. Being Human. Day Four

 "It is never asked if the other person might labor to translate into my brain’s diverging language or seek to enter into the interfolded knowing of my own lived experience. And so, through the hoops of translation I go, contorting each time, until the connection received at the other end almost always seems to help the other person far more than myself, assuring them of something. They think they know me more; and yet I feel less known than before the conversation began. My pain has somehow been smoothed over, erased, made more palatable."

Omg, I am so freakin tired of explaining myself to others to make THEM feel better. To make THEM at ease.

Where does it hurt? How does it hurt? 

Today, let’s name our losses, as many as you want and choose.
Let’s speak our pain, in our words, the body that has suffered having its say.
Let’s lay down the need to make sense to another and allow these experiences their own place of belonging at the table of our lexicons and languages.
I am here, interested and listening and ready to receive it.

Isabel Abbott (IG: @isabel_abbott) 

I ache. I'm in pain. Constantly. The only thing that ever seems to change is the level of pain. Am I LEvel 9 or Level 10. Oh, wow, I've been doing Physical Therapy. It's down to an 8. Alert the media. Not.

People, meaning my therapist, emotional, physical and massage, therapist, all hate it when I say,

"I feel like my body is out to get me. I feel like it is always fighting with me. I am exhausted. I am tired of fighting. It's hard to love a body that keeps failing you."

They say "Oh don't say that. That can't be true. " or " You've got this!"

Maybe I don't wanna get it. Did you ever think of that? Maybe I am sick and tired of fucking getting it. 

You don't understand. You only have seen, PART of my journey. 

I have had issues since before I was born. My mother had experimental chemo and radiation before she knew she was pregnant. Now I am not blaming anyone, so don't get your knickers ina twist. My mother and have discussed this and who knows, it could be a contributor.

After I was born. At 3 years old I had a rake fall on my head and I got stitches for the first time, but not the last. When I was ten, A coat rack fell on my while I was playing hide and seek. Oddly, I still like the game. I seemed to always have a cold growing up. I had back issues from Dance and Gymnastics and all I was putting my body through. I have been in a few car accidents. I had children before my body was ready and that made my body react negatively with ovarian pain, back pain, and more. In my 40s I fell and hurt my back making it worse. 

Then to add to all this misery, I found out I had Stage 3 Colon Cancer. I told the doctors in Iowa since 201 something was wrong with my colon. I begged for a colonoscopy. No one would listen. I was treated for my back degeneration and saw pain management but no one would look at my colon.

Sadly, a year after I married my third husband that I made chase me for five years because I was not sure if It wanted to get married again or not. To add to that emotional pain, his mother passed away five months after we were married, earlier in the year, I found out I had cancer. That was difficult, but not for me. For what we are speaking of here now. 

I felt like I spent 2016-2017 explaining myself to others. Not even just explaining, but making them ok with what was happening to me. I spent time, soothing their minds. Stroking their souls. Assuring them I was okay with things, even if I wasn't. 

In a way I was ok. I always knew in my life that something tragic was going to happen to me, I just didn't know when. I nearly smacked one spiritualist when she said "You know, you probably give yourself cancer with your negative way of thinking that would happen. By thinking something WOULD happen you made it happen."  Really, I almost hit her. Honestly.

In my Cyclothymia (Bi-polar symptom) mind, I started fixating on that. "Was it my fault?" "Did I give myself this illness?" I talked to my therapist about it...A LOT.

I had a whole year in 2018 to live. To explore. To travel. To celebrate life. To start seeing life differently. We planned and went on a trip for a whole month in France and a little bit in Holland. Amsterdam. Volendam and other areas. We moved into a new apartment closer to my husband's work so we could spend more time together. I was in a pure state of bliss. Je Suis Contente.

Was it enough? Did I learn the lesson I needed to learn? 

Evidently not.

My second cancer was found in February 2019. However, I started having issues right after we came back from France. At first, I passed it off, must just be my body getting used to American food and ways again. We came back on September 1st  and by October I was in the doctor's office. My ovaries or something in that region was really bothering me. We did  Biopsies let and right. All inconclusive. Months went by and it was Christmas. A friend asked me to help him at a Kiosk in the mall. Not a good idea. We were right in front of the Santa pictures. That meant a lot of kids wiping their snot and sick germs all over everything I was touching. The sneezed openly and coughed openly. OF course, I got sick. My husband got sick. Then he got that horrible Flu. Then I got that horrible flu and had to get pneumonia and flu shot afterward. I still felt horrible and thought I was gaining weight because my stomach was getting bigger. In January, I noticed my abdomen getting larger but yet I really had no appetite and I knew I wasn't eating much. 

The tail end of January I went to the doctor and other tests were done. Come to find out my abdomen was swelling and I had a tumor the size of a grapefruit in my ovaries and it was leaking fluid into my abdomen. By the beginning of February, the doctors were running around like chickens with their head cut off again because they didn't listen to me when I said there was an issue.

I spent all of 2019 in an infusion room it felt. Talking to other cancer warriors. Some not as warrior minded as me. Some had cancers four times in a row or some had more severe cancer. I felt like that was not even a place I could speak about my cancer without having to be careful what I say or how I say it. Someone people were brutally honest when we spoke and I loved that! But most people talked about their cancer. They talked about everything else BUT their cancer though that was the largest thing in their face! 

The hardest moment I had was when my first chemo appointment. My friend Angela went with me. She was a cancer survivor and understood. Plus she was a spiritualist like me and allowed me to be me and express myself however I needed to. I cherish her.  That first day was hard for both of us.

I walked over to the recliner to sit down and immediately the memory came back to me of all the time I sat there a few years ago. 

I burst into tears.


She held me as I sobbed and sobbed. When I finally sat down I looked around me and I saw people looking at me with sincere hearts and love. They knew the feeling. I knew by the look in their eyes they were saying back to me "I know. I know what you are going through. I understand that's okay to be yourself here. We get it."

At the end of 2019 I was given the status of NED, No Evidence of Disease, however, I was told I need to keep my port in and I have to get Avastin regularly. I may have to get it for the rest of my life. 

In January of 2020, I started getting my Avastin Once a month.

As of now, I have pains because of the Avastin side effects. I have shoulder tension and jaw tension. I have Hashimotos from all the chemo I went through, it affected my thyroid and this happens often in cancer patients. I have been complaining about my neck and shoulder and chest since last fall. Another series of no one listening to me. Joy. Not.

Finally, we are getting some Physical therapy happening and it is helping but not 100%

I have pains because of my Degenerative Disc in my neck and back. Plus the added should pain isn't helping.

I have been getting these odd pains under my breast, still can't figure that one out.

I lie in bed every night acknowledging each pain and doing what I can to alleviate the pain or make it tolerable enough that I can maybe get some sleep. I wake every morning in pain and take pills to try and relax my muscles and take care of that. Throughout the day, I stretch and take more pain pills to try and help. It takes the edge off but I am still in pain.

I told my therapist I think the term "Cronic Sufferer" is now my label I associate with the most.

Others do not understand my pain. Even if you have pains similar to mine, you are not in my body or feeling my pain. 

I am a positive person and do my best to remain and show positivity to others because it soothes them. It strokes their soul. It makes them feel better about what I am going through. 

I never realized how much I do that until I read this prompt and started thinking about it.

Thank you Isabel for the aid in allowing those feelings out.

I know pain is my life. I have accepted it. 


I am able to greet it, in a different way. <3

Being Here. Being Human.

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