My Rebuttal to the New York Post

On February 15, 2016 the New York Post ran an Editorial about the Aid in Dying Bill introduced by Democratic Amy Paulin in the Assembly and Republican John Bonacic in the state Senate.

You can read the Editorial here:
image

 

I categorically disagree with this article. So much so I submitted my own rebuttal piece to the New York Post that I hope they publish as the other side of this issue but I have my doubts.

Because I feel so strongly that they got it wrong I am posting my rebuttal here:

“On February 15th 2016, an Editorial ran about the Aid in Dying Bill in NYS. You got it completely wrong.

Suicide by definition is the act of ending ones life who is physically healthy while suffering from an emotional or mental issue. murder, on the other hand is taking of another’s life.

This Bill is for people like me. People who have a terminal illness that for when the time comes, want to have a humane death. Without this bill, my death will mean either struggling to breathe or suffocating because the cancer has invaded my lungs or it means I will slowly starve and be poisoned to death because the cancer is taking over my liver making it impossible for my body to filter out waste or I will suffer seizures, migraines and lose my ability to recognize my family or myself because lesions in my brain are growing and building pressure. I don’t know about you, but that’s not even close to humane.

Make no mistake – I want to live.  I will do every treatment offered to me to extend my life. I don’t want to die early. But at some point I will exhaust my chemo and clinical trial options or chemo will become too toxic for my body and all I will have left is hospice. That is when I want to be able to have a choice.

Cancer takes away so much. It seems such a little thing to ask to have some control of.

This is a choice that should be available to those terminal patients that want to make that decision.

This isn’t suicide. This isn’t murder. This is Death with Dignity and everyone should be able to chose to have one.”

I’d like to think they’d have the balls to publish this but I’m not so sure they are ready to hear the truth.

Be Careful What You Wish For

In 6 days I’ll finally be having breast surgery.

Finally.  *gulp*

I’ve been asking for surgery since I was diagnosed 2 yrs ago. Initially, I was told I needed to get to a stable point and then we could discuss surgery.  Ok. I get that. So I did radiation and started on an Aromatase Inhibitor.

Six months later, I was declared NED (No Evidence of Disease) and I asked again.

I found that it really didn’t matter that I was stable. My surgeon didn’t feel surgery was the right choice. The cancer was already was in my bones so it didn’t matter if the cancer stayed in my breast.

I mattered to me. I hated knowing the cancer that would ultimately be my demise was going to stay there. I wanted it gone. It would keep me up nights wondering if more of that tumor would leak out into my bloodstream and take up residence in another organ. Early stage Breast Cancer patients ALWAYS had their cancer removed. It wasn’t fair.

I was finally coming to terms with the whole ‘let’s not upset the apple cart’ thing when my last MRI showed questionable changes in my left breast. I began to panic. I told them! I knew this could happen. But they were supposed to know better. Fuckers.  Further testing showed I was OK but I began conversations about having surgery again. If the cancer didn’t kill me the anxiety most certainly would.

My Oncologist agreed.  Wait, what?

She finally understood my fears and anxiety and sent me off to the surgeon again.  She would have to agree this time. Right?

image

She looked at all the imaging, the notes from my Oncologist and examined me.  She sat me down in a small conference room and began telling me that although there was this scare it still didn’t change her mind.  A mastectomy, in her opinion, was too big a surgery for me. I hadn’t been NED for that long and I should go celebrate and enjoy life. I sat stunned. I was so angry all I could do was cry.

A few days later my Oncologist sent me a note. She was referring me to another surgeon that she felt would be more obliged to operate.  She really did get me. She finally heard me.

The surgeon I saw was cool. She listened to my story, fears and reasons for wanting surgery. When she began to discuss her opinion she started with agreeing with the other surgeon.  GAH!!  Then she went on to say she felt a lumpectomy was the best option to start with. She explained that starting with a smaller surgery would enable them to find out if the tumors were dying and if the surrounding tissue was clear.  She said there could be a possibility that if they couldn’t get a clear enough margins of surrounding tissue that they would have to go back in and that’s when they would just remove the breast completely.

If the lumpectomy went well and they got it all the first go around, in 3-5 yrs if I still wanted a mastectomy and I was still stable she would do it.

So, on Friday, I go in for a lumpectomy on the right side to remove 2 tumors and a lumpectomy on the left to remove a string of 3 tumors. It’s going to be out-patient and should be home that night.

image

I know this is the right thing but I’m starting to have that “Oh shit, what did I do” moment.  I’m not changing my mind. It’s just nerves.

Keep me in your thoughts this week. I’ll update after its done and maybe even have some cool pictures.  Kidding!

image

We Are Literally Dying For A Cure

Originally posted on June 19, 2015: Reposted on 10/1/2020.

Before Cancer, my Twitter and Facebook feed was filled with friends complaining about the inconveniences in their life. People who got cut off in traffic, others spilled coffee on their clothes on the way to work, and many voicing displeasures about the weather being too hot or too cold.  Now there isn’t a day that goes by that I can say, “Wow, no one died today.”  There is always someone letting a group know of another life lost to Breast Cancer or a family member updating their loved one’s page, letting friends know they are finally at peace and no longer in pain. Each time there is news of a death, it’s devastating. Each time the consistent thought running through my mind is, “This didn’t have to happen.”

The numbers and statistics are staggering. Those of us in this life that is Metastatic Cancer know them all too well.  They aren’t numbers we makeup. They are fact.  As frustrating as these numbers are, what is even more frustrating is that there are people that don’t want to acknowledge or hear about Metastatic Breast Cancer. I get that talking about a terminal illness can be depressing but not talking about it and pretending it isn’t happening while men and women are dying every day is irresponsible.

There have been articles and news of possible new breakthroughs and treatments for specific Breast Cancer types, but we still keep dying. There are new trials, new drug combinations, but WE ARE DYING.  People keep participating in races and buying into the ‘Pink Propaganda,’ but WE . ARE . DYING.

pinkisnotacure2

I feel like it’s time to take the gloves off and really rattle cages to make people hear us. It feels like our voices are just echoing into the abyss and not really heard. An upsetting statistic from the Metastatic Breast Cancer Alliance is that:

“7% of the 15 Billion invested into Breast Cancer research from 2000-2013 by the major government and non-profit funders in the United States and UK was spent on Metastatic funded research.”

Let that sink in, 7% for the 155,000 people in the US living with terminal Breast Cancer*. That’s part of the reason that 117 women & men die every single day.  Even medical researchers admit that there is a lack of funding, making it very hard for them to do their jobs.  Add to that, Senator John McCain (R-AZ) is offering an amendment to the National Defense Authorization Act (NDAA) on the Senate floor which would do irreparable damage to the Department of Defense Breast Cancer Research Program.  Many of us have been Tweeting and calling our local State Senators to implore them to vote against this amendment. Clearly, the US Government is also unaware of the staggering numbers of men and women dying every year.  Or maybe because it’s Breast Cancer. That it’s not looked upon as a serious matter.

It’s so frustrating when I try to educate or inform folks that of the truths and implications of what precisely a diagnosis of Breast Cancer really means and could mean for their future. It is most often met with denial and hostility. Women have been led to believe that Breast Cancer is the lesser of all other evils. Still, the cold hard truth is that ALL Breast Cancer is potentially terminal if it isn’t found early enough, and even when it is, there is up to a 30% chance that it will end up in an organ or bones when it becomes terminal. It’s criminal that women are not told this information at the time of diagnosis. Instead, women are force-fed information and brainwashed into thinking if they follow their surgery, chemo, and radiation (not necessarily in that order), they will be good as new.

10/1/2020 Update: Last month, on Twitter, I put out a thread of 5 tweets. In this thread, I ‘busted’ four popular breast cancer ‘myths’ (or what I like to call myths). Unsurprisingly, there were some unhappy people that disagreed. Not only did they disagree; they called ME angry and bitter. I am not shocked by these words at all. I have been called those and worse and I owned it. I was. I used to be. I was shocked that the women that came at me were metastatic breast cancer patients. This is not a joke. Even after five years, which is when this blog was originally written, there is still a great divide. There is an urgent need for factual and truthful education around breast cancer, all of its implications, and metastatic disease.

There have been Social Media campaigns on Twitter and Facebook with hashtags to create noise and get people talking about Metastatic disease. They started out strong, and we were all excited to post till our fingers bled. But it isn’t enough.

Last week there was a video that came out by Holley Kitchen, a woman with Metastatic Breast Cancer. She had all the right statistics, pictures of her precious children and set it all to a fantastic song that everyone could relate to. It went viral. She got a lot of press and was even featured on Good Morning America. It was a huge step for those of us that are dying to be heard. But soon, the hype will quiet down, and Metastatic disease will once again fade into the background where everyone wants it to be.

10/01/2020 Update: Holley died from MBC on January 12, 2016. Seven months after she published her viral video. She was No Evidence of Disease when she made the video that is now part of her legacy.

Tonight I saw part of the movie, The Normal Heart. The funeral scene where the actor Jim Parson’s gives the eulogy resonated with me. Although it’s about the death of a man who had AIDS, the words ring true for those of us with Metastatic Breast Cancer:

“In Closing, I’m just going to say I’m mad. I’m fuckin’ mad.

I keep screaming inside: Why are they letting us die? Why is no one helping us?

And here is the truth – the answer – they just don’t like us.”

 

METUP

 

* Statistical facts have been updated to reflect the current numbers as of 10/1/2020.

When is it Time to Say ‘Uncle’?

It’s been a LONG week. No, a really long ass Mother Fucker of a week.

It’s going on day 4 of the elevator in my building being out of commission. We live on the 4th floor. That means 6 flights down and 8 up every time I leave the confines of the 4 walls I live in. Now, I could go down 4, cut across to the other building, end up outside and then walk to the end of the street to the parking garage. Then do the whole thing in reverse when I get home. Either way you slice it its a gigantic pain in the balls and way too much walking when you don’t feel good or when your bone and joint pain is off the charts.

image

My question is this: what if I was in a wheelchair?  How am I leaving ny residence when there is no way around having to go down 4 flights of stairs?? Because this isn’t the case, no one seems to give a shit. No one.

I had been told (and I have the email to prove it) that all would be fixed by Friday.  Well, guess what? It’s after 6pm on Friday and the elevator is STILL NOT WORKING. This means that it’s going to be at least Monday now and there isn’t a guarantee THAT will be the case.

image

The management company is aware of my illness and that my cancer is in my bones. They have not made one single concession other than to say the maintenance guys would help me with any bags or groceries. Oh really??? And how the fuck would I track them down???  When you need someone its literally impossibleto find anyone. So, thanks gobs and gobs but I’ll figure it out on my own.

Today, I finally got the report back on my Echo-cardiogram. Turns out it’s MOSTLY OK. The two issues is that my Mitral Valve and my Tricuspid Valve are both regurgitating. The dumbed down explanation is that those valves don’t close all the way like they should and blood is flowing back up into the chambers. This could explain the fatigue, the edema in my ankles and feet and my shortness of breath. I’m being referred to a Cardiologist. Awesome. Hopefully, I’ll know more after I see him/her.

image

On top of all this fantasticness (it’s a technical term, trust me), my next PET scan is Friday, June 5th. My Oncologist also ordered a CT of my abdomen and pelvis. This is where I find out if I’m still NED’s #1 girl or if NED gives me the old “It’s not you, it’s me” speech. I have no feeling about it one way or the other. Am I nervous? Sure. Do I think there will be progression? I honestly can’t say. I’ve been absolutely, totally positive in the past it would be bad news only to find out it was good. So, I have no clue. I have had increased back pain and there is a spot on my ribs that has thickened quite a bit but that could be nothing. I’ve also been quite forgetful and have been mixing up my words. It’s been noticeable to my son. Enough so, that he has commented about it. I’ve also had a significant increase in migraines. Does this mean I’m worried about my beautiful brain? Not especially. I can’t worry about what is out of my control.  The results will be what they will.

Maybe the bullshit of the elevator not working will keep my mind off the fact that I have scans this week and I’m adding a Cardiologist into the mix.  Or maybe the stress of it all on top of all the stair climbing will cause my heart to explode and it will all me a moot point. All I know is that if that WERE to happen, I wouldn’t be all that torn up.

Wait….is there really a stairway to heaven??????  On second thought….

image

My Bucket List Got a Bit Smaller

We started planning our February vacation many months ago. We knew we wanted to go to Florida but not sure where. Finally, we settled on Universal Studios and Cape Canaveral. The boys are too old for Disney and this seemed like a great alternative.

Thanks to my amazing friend Nancy Beth, she put me in touch with an organization that provides adults with a terminal illness and children 16 and younger tickets to Universal Studios! I immediately got in touch with Compassion Partners and spoke with a lovely woman who told me what to do. Later that day, I had a confirmation letter from her outlining that 10 tickets (2 days) to Universal along with a Gold Pass AND 5 tickets to Sea World were on hold for us!! Little did I know, the Gold ticket allowed all of us to get escorted to the front of every line of every ride at Universal!! No matter how long the wait was…we went to the front of the line. What a time saver and boy did it help me! The boys felt like VIP’s!

image

Two weeks before our trip, I found that Sea World offers ‘Experiences’. A behind the scenes if you will. I about lost my mind when I saw they had a penguin experience! I LOVE penguins. I collect them and I even have a penguin tattoo. I booked it for my son and myself. The others didn’t care for doing it.

It was amazing!! We were able to go back to where the penguin habitat was and the tour guide brought out three penguins! Leon was first. Leon is a King penguin and the largest one. He was so sweet but all he cared about was getting out and wandering thru the offices.

image

Sherlock was next. Sherlock is a Rockhopper. He was very friendly and very curious. He had fun posing for pictures. While Sherlock was posing for photo ops, Leon was walking around and hanging out by the door hoping it would open.

image

The last little guy was a baby Gentu. He was losing his baby fluff to make room for his feathers. This penguin wasn’t named yet because they weren’t sure if he was male or female. I didn’t care. I just knew I was in penguin heaven! The best part was that I have this memory with my Son and he has it with me. My first bucket list item has been accomplished!

image

Our last day was spent at Cape Canaveral. It was a chilly day for Orlando but we didn’t care. We went on a 2 1/2 hour bus tour and saw a lot of locations where NASA would launch from. Its very impressive. If you haven’t gone I highly recommend it.

image

Today would mark another bucket list item as complete. I was going to meet Nancy Beth!! She so nicely took a half day to come meet us and hang out. I was so excited to finally meet her. We have been talking every week since the holiday’s. She’s so upbeat and has a sense of humor I appreciate.  Sure enough she did not disappoint. We had lunch together and went to a few more exhibits. In true dork form, I managed to get my credit card stuck in such a way that I almost wasn’t getting it back, but thankfully I redeemed myself.

image

We will forever be bonded by our matching pink NASA sweatshirts!

I had a fantastic week and I can confidently say everyone else did too. The only thing that would have made it better is if I could have brought Bella with us. She was on my mind the whole week. I did call twice to check on her. She was acting OK but she was having some intestinal issues (probably nerves) and needed probotics. I cannot wait to get my princess and love her and snuggle her.

12 more hours until we are home.