Nevertheless We Persist – Lobby Day 2017

As you my remember, the NY Medical Aid in Dying Act was re-introduced this past January and I traveled to Albany to be part of the Press Conference and to speak with lawmakers so I could share my story about why I am in support of this legislation. You can read that blog here.

Although the Bill was actually ‘birthed’ back in the spring of 2016 and passed through the NYS Assembly Health Committee in May of 2016, the session ended and essentially everything had to start over in the New Year.

Yesterday, was the Spring Lobby Day in support of Medical Aid in Dying for New York State organized by Compassion & Choices. Supporters from all over the State and storytellers like myself came to the State Capitol in Albany to meet with lawmakers and their staff. Our mission, which we eagerly accepted, was to provide facts about the Aid in Dying Act and answer any questions they may have. MY job in particular was to share why I wanted Aid in Dying to be an option that I could choose at the end of my life.

Lobby Day kicked off with a Press Conference. There were many powerful speakers that spoke in support of Aid in Dying:  Janet Green, who lost her partner to brain cancer, Lindsay Wright, who lost her husband to cancer, Dr David Pratt, former Schenectady County Commissioner of Public Health Services, former Republican Assemblywoman Janet Duprey and Assemblywoman Amy Paulin who Co-wrote the Bill.  I was also asked to speak. Corinne Carey, Director of Compassion & Choices NY gave her opening remarks and introduced each speaker.

Lobby Day Albany Capitol

Photo: (Matthew Hamilton/Times Union)

It was also captured on Facebook Live if you’d like to see the Press Conference here:

One highlight of my day was earlier in the morning when I was able to get a few moments with Senator Diane Savino, the other Co-author of the bill. I wanted to thank her once again for working so hard on this for patients like me. This woman gets it done in Albany. I actually got up the nerve and asked if she would be so kind as to take a selfie with me! SHE SAID YES!! I love how we happened to be color coordinated too!

(Assemblywoman Palulin – You’re next!)

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Senator Diane Savino and ME

This was my 3rd time in Albany. I wanted what I said to Lawmakers/Staffers to be different from in the past. Previously, I spoke more about my illness and what it was like to live with terminal cancer. The pain, the treatments, the surgeries, the medications. This time it was about my personal convictions as a rebuttal to the vocal opposition that they will likely hear or have heard. I also included a description of how I envision my last day to be having this option available. I wanted to provide a mental image of how I could give my friend and family one last GOOD memory before I go. Death doesn’t have to be something we don’t talk about. We NEED to start talking about it. Death is as much as part of life as living is.

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Photo: Corinne Carey, Compassion & Choices NY

Over all, it was a successful day. There were many volunteers that came out to walk the halls and meet with lawmakers but there is still much work to be done. While there is overwhelming support for Medical Aid in Dying in NY by the people, those of us that have been walking the halls of the Capitol have more lawmakers to speak to. It’s critical that they hear personal stories. EVERYONE has a family member that had a death that wasn’t what they wanted. They were in too much pain. They were crying out. They begged to die. THOSE are the stories that lawmakers NEED to hear.

Regardless of anyone’s personal opinion of Medial Aid in Dying, this should be an option that the patient chooses IF they want it. At the end of the day, how I die doesn’t impact anyone else other than ME and MY family. No one should insist that I die or YOU die in a way that is anything other than what we wish it to be.

If you would like to get involved and also share your story with lawmakers with me – please visit: Compassion & Choices NY and GET INVOLVED! If you live OUTSIDE of NY and want to get involved with Medical Aid in Dying in your State, please visit: Compassion & Choices to sign up to volunteer!

Until We Meet Again

Social Media tends to bond people with similarities. Similar interests, hobbies, music and even illnesses.

Cancer is one of one of those illnesses that bonds people rather quickly. Especially terminal Cancer. We are a group of people that bond over treatments, side effects, helpful hints, advice, support groups and stories of when diagnosis happened.
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Deb Mumma is one of those extraordinary women I was lucky to have met thru Social Media because of our common diagnosis. Right down to the same pathology. We became fast friends and talked quite frequently thanks to our mutual friend – insomnia. There were many 3am conversations when Deb was recuperating from back surgery. If you’ve ever spent time in the hospital you know how difficult it can be to sleep for any length of time.

Deb loved her family. She spoke of her parents and how after as many decades they had been married they were still just as close as in younger days. Her husband, Ron passed after a long illness. It was very clear how much Deb missed him. The way she spoke of their marriage made me a little jealous.

The pride and joy, that always brought a smile into Deb’s voice were her Children and Grandchildren – 12 little ones in all! And of course her pups, Sully and Kiki.
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At Christmas we talked about our kids. Deb worked furiously on two identical doll houses for her Granddaughters. And then there was the trip to Disneyworld in March. Deb was so excited to tell her Grandkids and witness the expected ‘freak out’.  It was very important to her to make lasting memories as her health began to decline. Although she would never admit it or want to talk about it.

The first weekend in April, Deb helped me with a speech I gave in Buffalo (See previous post dated April 7). She knew how nervous I was and offered to read it and give me the honest criticism I needed. Then on Saturday night we Skyped so she could be my audience and I could practice giving my speech to her. Deb was selfless like that. Even though she had been feeling sicker from chemo and her liver failing she still made time to video chat.

Many of us with Metastatic Breast Cancer are active in some way with advocacy. Deb was no different. Her advocacy was on a local level. It was important for her to raise money for those receiving care at Cumberland Valley Breast Care in PA. Deb even designed a beautiful necklace with the help of a jewelry designer with part of the proceeds going to CVBC and to Breast Cancer Research. “Ribbon of Hope & Tears”. This is one ribbon I can endorse. It doesn’t have to have a pink gem. There are 10 gem options and 3 metal options for the ribbon.

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In the time I’ve gotten to know Deb, we had meaningful conversations and we were there for one another whenever we needed each other without question and regardless of the time of day or night. Deb knew I never muted my phone and that I am a very lite sleeper so the ‘ding’ of my messenger would never go unanswered if she needed to talk. I’m going to miss that. A lot.

“A dragonfly to remind me even though we are apart, Your spirit is always with me forever in my heart”…..Until we meet again Deb. I love you.

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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:
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http://nypost.com/2016/02/15/dont-pretend-its-not-assisted-suicide-at-least/

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.

Sucicide 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 sucicide. 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.

The Murky Waters Have Become Clear

It’s been a very rocky month.

Since my second breast surgery and learning of progresion in my ribs, I’ve started a new treatment of Ibrance/Faslodex and had another PET Scan.

Going into the PET Scan, we were expecting to find further progression in my lung and liver. I was very relieved to learn that was not the case. However, there was ‘intense uptake’ in my tonsils and in two quadrants of lymph nodes in my neck. I needed to know if this was the beginning of something else so I saw my ENT. I was again relieved to learn that, for now, I’m OK. Having my tonsils out should be considered but as long as it’s not an immediate concern they are staying put.

While all this uncertainty was playing out I had a lot of time to think of how I see my future playing out and how I want things to be. It renewed a belief that I’ve had since my diagnosis and that is I don’t wish to have this disease consume me when my treatment options end. I want to die on my terms and when I determine its time.

Last year I was interviewed by local media about the Death with Dignity when New York State law makers announced they wanted to introduce legislation. It was after that interview that i contacted Compassion & Choices and worked with them on an Opt ed piece that was published in my local newspaper November 2015.

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This past Wednesday I was interviewed again when Senator Amy Paulin announced she was joining the cause for Death with Dignity legislation after a family member suffered thru a cancer death.

http://http://www.whec.com/article/610/?vid=3128129

I feel like this is a renewed direction I need to go in. Not only for me but for those that also want to have this same choice. And that’s what this is. It’s a choice. It’s not mandatory. Its not something to get talked into. It’s an option. It’s something you can decide NOT to do too. 

Death with Dignity is also NOT sucicide. It’s very important to me to change the stigma. Death with Dignity is choosing to die on your own terms when you don’t have the option to live. Suicide is taking your life when you are otherwise healthy and have more of a mental/emotional issue.

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Some people that oppose this option do so because of religious reasons or because they fear that the person will somehow be taken advantage of by others. In other words, they’d be ‘talked into’ it because it’s the ‘easy’ option for the caregivers.

Growing up Catholic, I’m very confident and comfortable knowing that MY God doesn’t want me to suffer and more importantly wouldn’t want my Son to watch me suffer and die. MY God wants me to leave my Son with all the best memories I can and non of them include me laying in a bed wasting away or struggling to breathe.

It’s OK if this isn’t right for you. It’s OK if you prefer the biblical, regular way to die. That’s why this is a choice. MY choice. And I am going to fight for this the best I can so this is an option I can choose from.

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15 Days In and I Already Want a Do-Over

I’m not going to lie. The end of the year was rough. There was what felt like, an unprecedented number of deaths in my circles. So, when January came a knockin’, well I was all too happy to close the books on 2015.

But it didn’t stop. The deaths and bad news just keeps coming and it’s becoming too much. I’m afraid to open my Facebook or Twitter because I know that there will be more bad news.

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I’ve been feeling very much like I’m in a similar situation as the movie The Hunger Games. Any one of our names could get called for the last fight of our life. It’s just a matter of when – not if. Every time I hear another beautiful, strong advocate had her name called I wish the same wish – that I could give them more time. More time with their children. More time to give hugs and kisses. More time to read stories. More time to say “I love you”. 

Then I begin to wonder when I’ll hear my name called out in the crowd. When will my time come when things go sideways and I have to be stronger than I’ve ever been and make decisions I’ve been hoping I’d never have to make. It scares me because I’ve watched the health of my sisters go from NED (No Evidence of Disease) to being out of treatment options and taking their last breath in a matter of months.

When will people notice? When will people begin to care? When will there be outrage and anger for all the children that will grow up without their Mothers?  

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Every day I yell and rant hoping that someone listens. Hoping that someone helps us. It can be very discouraging when the bad news keeps coming but I won’t stop. I can’t stop. I will keep yelling, ranting and making noise until someone hears us, until someone listens

We Are Literally Dying For A Cure

Before Cancer, my Twitter and Facebook feed was filled with friends complaining about the inconveniences in their life – who got cut off in traffic, who spilled coffee on their clothes on the way to work and many voicing displeasure 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 make up, 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 still keep dying.  People keep participating in races and buying into the ‘Pink Propaganda’ but we still keep dying.

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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 mbcn.org 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”. Only 7% for the 155,000 people in the US living with terminal Breast Cancer. That’s part of the reason that 108 women die every single day.  Even the 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 it’s not looked upon as a serious matter.

It’s so frustrating to me that when I (or others) try to educate and inform women that have either not been affected by Breast Cancer or have had ‘early’ stage Breast Cancer of the truths and implications of what exactly 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 but the cold hard truth is that ALL Breast Cancer is terminal if it isn’t found early enough and even when it is, there is a 30% chance that it will end up in an organ or bones and that’s 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.

There have been Social Media campaigns on both 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 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.

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.”

dying for a cure'

Remembering Mary

Yesterday, on May 21st, I turned 45. Officially at 4:35am.

My Birthday is a mixture of happiness and sadness.  Happiness because I’m still here despite living with a terminal illness and sadness because I share this day with the passing of my Grandmother and the infant daughter of a high school friend. It’s bittersweet.

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My Grandmother and I were very close and not just because I was her only granddaughter. Growing up, I spent a lot of time with my Grandparents.  Most weekends actually, because both my folks worked at our family business. I learned a lot from my Grandmother: the finer points of gardening, how to play the latest card games, why it’s important to go to three different stores to buy 6 different items and how to iron.

My Grandmother often said we were a lot alike because we shared the same astrological sign of Gemini. We were ‘twins’.  I was always able to confide in Nonnie. She listened without judgement and never betrayed my comfidence.

I would argue that I inherited her stubbornness and compassion for others. When she was insistent on something there was no changing her mind. However, her naivety was all her own. She always saw the good in everyone….e-v-e-r-y-o-n-e. You could ask her about Charles Manson and she would insist he didn’t really mean to hurt anyone. This was frustrating as it was amusing.

As Nonnie got up in years it was clear she shouldn’t be living alone. She was becoming forgetful and she would occasionally fall. She was very proud of her independence.  She had spent 60+ years married to my Grandfather who took care of her completely.  After he passed away, Nonnie became self sufficient for the next 20 yrs.  It was difficult for her to admit she needed help. Not to mention dementia was taking hold.

Nonnie lived with my folks for as long as they could care for her. In early 2013, the hard decision was made to seek out a facility that could give Nonnie the care she needed. I spent many afternoons with her once she got settled into her new digs.

It was difficult to watch her decline over the next 4 months and in May it was clear she was transitioning and preparing to be with my Grandfather.  That day, my birthday, she hung on until we arrived but didn’t pass until I had left the room. It was her final gift to me.

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If I had to choose between having her here today and her passing on my birthday, I’d definitely choose the way things happened. I’m thankful she never knew of my diagnosis and at the time of her passing she knew I was the happiest I’d been in a very long time.

That was MY last gift to her.

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