Inclusivity…

Inclusivity – The aim of inclusion is to embrace all people irrespective of race, gender, disability, medical or other need. It is about giving equal access and opportunities and getting rid of discrimination and intolerance (removal of barriers). It affects all aspects of public life.

Today, I encountered my 2nd bout of not being included in my life (at least from what I remember).

As a woman, I’ve come to expect not being included in certain things. Matter of fact, one that hurt me badly was when I was a Maintenance Planner at a refinery. I was the only woman planner in a sea of men. I was okay with that…we had minimal issues. One day, I was told that I’d be handling several other units as these other men were going to be out golfing. The fact they were golfing, didn’t bother me…the fact I had to handle their units/work/labor/contractors for the day, didn’t bother me (I knew I could handle it). What did bother me is no one asked if I wanted to go. I wasn’t even a thought. I didn’t want to go, but I wanted the option. We were supposed to be a team. I never said anything…I accepted it.

Well, it happened again today…and it had nothing to do with being a woman or in my job. It happened at a lung cancer event.

I was invited to a ribbon building project at a person’s house. I had always wanted to help build the ribbons to let others newly diagnosed with lung cancer that they weren’t alone. Nowhere on the invite did it mention it was being hosted by a certain cancer center. Towards the end, I asked the host if they were going to get a picture of the lung cancer survivors…he said yes. So, we first took a picture of everyone…survivors, family, friends, etc.. Then, he announced they were going to take a picture of just the certain cancer center’s survivors. Unfortunately, I go to a different center, so I was not allowed in the picture.

I later told the host that I couldn’t be in the picture and he said “oh well, ha”. I felt so left out. Here, he just touted to the group how all lung cancer survivors are family and lung cancer doesn’t discriminate and he just did. I didn’t matter at that moment and it sucked.

I will not be going back to that build. I walked away the better person, but what a depressing day. I was looking for that local lung cancer family…I didn’t find it.

For anyone that’s experienced non-inclusivity, I feel/hear you. I will keep my eyes and ears open to include you.

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Interview with The Patient Story…

https://www.thepatientstory.com/cancers/lung-cancer/non-small-cell/amy-g/

I have pretty severe anxiety when it comes to being interviewed. It’s obvious that the one question I have the hardest time with is: tell us about yourself. Ugh, I forget to mention I’m married every single time. Sorry Boopie!

I’m proud of myself because as the interview goes along, I’m more comfortable.

I’m thrilled to get my story out there. I need people, including doctors, to know that targetable mutations in squamous non-small cell lung cancer does happen.

Please do biomarker testing on your patients.

Bucket List…

Do not like making these lists. But I’ve noticed that while I have quiet time or driving around, things I want to do just come up…and then I forget them. So here is where they will be.

  • Ride in a racecar on Mid-Ohio Raceway.
  • Ride in a racecar on Indianapolis.
  • Stay in the Presidental suite in a resort in Atlantic City…ocean-facing.
  • Meet the CEO and Board of Directors of Pfizer…weird, but their drug has given more time and outstanding quality. I want then to see a person their work affects.
  • Get a suite at TD Garden for a Bruins game.
  • Meet the Bruins…okay, this is more for my husband.
  • Ride in a Lamborghini.
  • Get in a pit of puppies.
  • Have a professional cake made by Ron-Ben Isreal. Love that guys smile 🙂
  • Have a professional makeover.
  • Own one item of Louis Vitton.
  • Get 1st row tickets at a Nine Inch Nails concert.
  • Meet Nine Inch Nails. Yes, I’m 50 years old, but I love these guys.
  • Get super dressed up for some kind of gala.
  • Dance around in wildflowers.
  • Take a bath in rose petals.
  • Pose with the happy sunflower field.
  • Have dessert brandy and expensive cigars with my family. We did this when i was younger (yes, i was 21), but it was so cool. Kind of high brow.
  • Ride horses in Sarasota, Florida.
  • Search for seaglass in Seaham, England.
  • Ride along with a cop.
  • Stay in a super haunted house/hotel/B&B.
  • Meet Donald Trump…dont give me a hard time, he seems to be the most interesting man in the world
  • See Peter Gabriel in concert one last time and be in the front row. Meeting him would be a plus.
  • Swim, in all my naked fat glory, in an infinity pool.

That’s it for now…lol!

Long, Sad Day…

It’s been a really long time since I’ve written anything here. Why? Life just marches on. I haven’t had my cancer make any noise, so it’s been boring on that front.

I’m here today to document that my lovely boy was helped to the Rainbow Bridge this morning. I’m devastated 💔 I’m exhausted, so I’m just going to copy what I write on Facebook.

We just sent Mr. Mickey over the rainbow 🌈 I want to thank Peter Hayes for giving him to me, trained, about 8 years ago. Pete, you’ll never really know how much that dog meant to me.

Mickey was a Saint, even though he didn’t like other dogs, he loved all people. He loved being outside, going on walks and hikes. He loved his family and his couch. He loved his toys, but most of all, he loved food! Any kind of food: meat, sides, veggies, and candy (yes, candy). He was large and in charge…he’d take you out if you ran across the yard. He’d roll you out of the bed, or squish you on the couch. He always wanted to be near me: he’d stare at me while I’m using the bathroom, he’d climb in the shower with me, he’d go out and get the mail with me. I’m pretty sure I was his person.

Mickey didn’t have many health issues until the last 2 years. He was diagnosed with LarPar and had at least, 2 vestibular events. His hind end failed him. He would go the bathroom where ever and when ever. He lost most of his hearing and eyesight. The one thing he never lost was his sniffer…he’d smell a cookie from a mile away.

I’m sure I’ll have many memories to talk about later, but right now I need some grieving time. It’s hard to come home to an empty house, an empty spot on the couch and now, I have to go back to sleeping upstairs, something I haven’t done in almost 3 years – between me having bone mets, breaking my femur, having hip replacement and Mickey not able to get up the stairs, the couch was my bed.

For now, I mourn a big-hearted pup, who couldn’t talk, but always let me know he loved me. RIP my sweet boy! I’ll see you again.

Lung Cancer Research Foundation & Colonoscopy…

I received my official kite for the #Lungcancerresearchfund #LCRF #goflyakite #kitesforacure . I will fly this on June 26th wherever I am.

In case you’re wondering about the tail colors, this is what they stand for:

White: know someone with lung cancer.
Turquoise: lost someone to lung cancer.
Navy: support the fight against lung cancer.
Orange: I have lung cancer.

I still have 4 days left to fundraise…remember: $5.00 gets me, singing a song, in a Christmas Tree costume:)

I had my 1st colonoscopy yesterday. The prep was terrible and I did not feel alive until this morning, however, I do not need a 2nd cancer.

I had no issues…not even a polyp! That’s a good thing! If you are 45 years old and older or have a familial history of colon cancer, please schedule your colonoscopy.

Colonoscopy and Family.

So, I’m doing prep today for a colonoscopy tomorrow…oh yeah!! However, if it saves me from another cancer, I’ll do it!!

You should too if you’re 45 years or older OR you have a family history of it. You’re asleep, so your embarrassment is limited and you won’t feel anything. Don’t let that stop you…do it!

If they had a monitoring program for lungs, I probably wouldn’t be Stage 4.

If this post pushes at least one person to schedule their colonoscopy, then my oversharing has worked 🙂

I AM SO HUNGRY…AND HANGRY 😀

Ventimg moment: The 2 images above are my brother to a tee. I have learned to pretty much ignore him, but Dear God, do that and you get the rage. He lives with me, so I can’t get away from him. My poor husband has to deal with it and I don’t know why he hasn’t divorced me. I’d divorce me if I knew I was letting a person in the house like that, who isn’t going away.

Don’t try to tell him this, then his rage and silent treatment are worse, and he accidentally breaks things (although he’ll tell you he didn’t break/damage it). He can’t take criticism at all.

I listen to him bitch and moan for hours everyday. He asks me how I’m feeling, I try to answer, then he cuts me off with his “bad day”, “idiot people” or “shitty cheap machines”.

My husband and I will be watching a movie and he’ll come busting in, talking about some shit that we either don’t care about or don’t know about.

He needs a tinfoil hat. He gets worried when helicopters fly over our house (we’re in an area with a lot of medical copters and where executives from Merck fly in). He wonders why the township is paving on a Sunday and thinks the government is installing something.

He can’t keep a great paying job with great benefits. He doesn’t own a car. He doesn’t have health insurance. I keep telling him, “you do realize that I have Stage 4 cancer and can die at anytime right? Where are you going to live? What are you going to drive?” He gets mad and doesn’t want to talk about it. I sincerely hope my husband doesn’t let him stay here.

He will not go to a doctor because they are “stupid” and “don’t know anything”, but yet he worries about every little pain.

I am so tired of him. I’m tired of him living here. I’m tired of him always relying on me when he does the wrong thing. I’m tired of the guilt trips he lays on me. I’m tired of being a victim, but I guess I’m not tired enough to throw his ass out.

Thanks for listening to me ❤❤❤

Fundraiser for Lung Cancer Reseach

http://participate.lcrf.org/site/TR/LCRFSignatureEvent/General?px=1811348&pg=personal&fr_id=4116

So, if you donate $5.00, I’ll sing a song of your choice (one minute) in a Christmas Tree costume on video and post it here…as a introvert, this is really hard for me (and I’m scared…lol). It may be really bad singing or really good singing…

Come on my friends…you know you want to see this!!

Family…

Family makes you question your sanity. Prior to cancer, I was the only one (on my side of my nuclear family), that had her shit together. My parents had money problems and my brother has so many problems (but they’re not due to drugs).

This will be about my brother and is really long.

Growing up, he was my brother. We played together, went to school together, and covered each other’s asses when we could. Well, my brother would get in trouble almost all the time. He liked to talk back. My mom told me that even as a baby, he pretty much cried or was angry all the time.

My father was strict and seemed angry all the time. My mother and father did hit us. Mostly on the ass, but with things like hairbrushes and belts.

My parents never really went to our curricular activities. Of course, they were both working a lot. My brother and I were latchkey kids.

As my brother got older, he had issues at public school. He didn’t get along with teachers, never really had friends. My parents had him transferred him out at the Age of 13 to a “special” school. He was the oldest one there and ended up being a mentor to younger kids. Those younger kids were mostly mentally challenged. Remember: this is before ADD, ADHD, etc.. They had no way to fix his issues. After a year, he came out of that school and went to a vocational school. He did very well. He was a very talented welder.

When we were teens, our whole family had been diagnosed with depression. I went to a psychologist for at least a year; my brother went once. Mom and Dad went when they needed.

As a teen, my brother was extremely mouthy and did stuff my parents asked him not too. He was pretty much an asshole. He got in “fist fights” with my Dad…he was always grounded…they were always yelling. My Dad through his video game down the stairs.

I moved out when I was 18 because he and my parents relationship was toxic.

I was happy. Thing is: I didn’t hear from my brother for another 15 to 20 years. To me, he just disappeared and my parents didn’t know where he was either.

Then I get a phone call, he needed a place to live. Well, I was living in a studio department and I didn’t know his history. I found him an apartment and paid the upfront costs and 1 months rent. I got phone calls from him for maybe 3 months.

All of a sudden, I get a call from his landlord. He hasn’t paid rent and he can’t get a hold of him. So, I met the landlord at his apartment and had him let me in. My brother wasn’t there. His shit was there. I told the landlord to throw it all away.

I didn’t hear from my brother again for about 10 years. He had called me crying, saying he was cold, living in his truck (didn’t have heat) in the hospital’s parking lot. So, I moved him into a motel (real shithole) for 2 weeks. I brought him my laptop to find a job and an apartment. He had smoked Marijuana so he had to go at least 30 days before he could get a job. I moved him in with us for a month. He found a job and an apartment.

For 10 years, he was doing okay. Although, he moved 6 times and had just as many jobs. He had to borrow my truck because his broke down.

8 years into that and I’m wondering why I haven’t heard from him and where my truck was. I found it..it was at his last apartment/job. I asked his boss/landlord where he was. Boss said “he was in jail, but this guy is his friend. He might know where he is”. I finally talk to him on the phone and he says he’s fine. 1 month later, I get the phone call that he is homeless, living in an abandoned house. I didn’t want him coming to live with me and my husband. My husband talked me into it.

Here we are, 4 years later. He and his dog are still living with us. He uses my vehicle to get around. He thinks he owns part of this house. He does so much shit that pisses me off. He forgot to grow up…he’s petty. I’m pretty sure he’s bipolar. He refuses to get mental help. He refuses to get a real job (he’s a talented welder and here he could make $24-$28/hr to start.) He says he doesn’t want to do that anymore. He’s now a car detailer making $12/hr with no benefits. He has no health insurance. He complains that he feels really sick or hurt something – I just look at him, like wtf am I supposed to do? He does help around the house and helps pay some of the groceries. He complains every day about his childhood, and his adulthood. How everybody is an asshole. He needs constant attention and his ego stroked. You always have to say how great he is that he did something…like it’s a big fn deal.

I’m getting really tired of him. You can’t give him constructive criticism. He doesn’t listen on how to improve his life and attitude. I keep trying to get my husband to move to another state. The amount of anxiety he causes me is bad. I shouldn’t live like this and we are enabling him, but he is the best manipulator in the world.

I had to get this out. There is so much more, but I had to start somewhere.

Thank you for reading!!