It’s Always Something 

It’s been a bit since my last update and some things happened. They usually do. So it’s time to get caught up.

I’ve been back on Morphine for the last few months for new pain in my right side. It’s hard to pinpoint exactly where it is so let’s just say it’s in the area of my thoracic/rib region. 

When I saw my Oncologist at Sloan she ordered standard X-rays to see if I might have broken a rib. It didn’t feel like a broken rib and it wasn’t. No surprise there. Her suggestion was that if the pain persisted to move forward with a PET/CT. 

I decided that I would wait until my scheduled time and not do it early for a few reasons. First and foremost, should I have the scan too soon and there is something brewing it may not pick up what we need it to. Active cancer has to be at least 8mm before a PET/CT will detect it. The other reason for holding off is that I’m now on Medicare and I will only be “allowed” so many PET/CT scans before they tell me I’ve reached my max. Once that happens I will have to rely on CT Scans and Bone Scans which aren’t as reliable as PET/CT Scans. I want to be very careful with how and when I get scanned now. So, I will manage the pain and wait until November.

MEANWHILE……

Because I’m me and wacky things always seem to happen to me, September proved to be no exception. Although it began around the end of August. Here’s what happened…

I began to notice that my head felt sore. My actual skull. The left side hurt when I laid down to sleep or if I touched the side of my head. (Yeah, I know, don’t touch it). Every day the pain began to get a little more intense and the left side started to feel “lumpy”. The pain began to wake me up during the night. If I didn’t stay on my right side I would wake up in pain. 

I had my usual appointment with my local Oncologist coming up so I just dealt with it. It was maybe a week. Then the Monday before my appointment, the lymph nodes down my neck, at my hairline and near my clavicle popped out and were very angry. This made the pain in my head feel worse. My head felt super heavy, The left side of my head felt funny. No fever though.

I go to my appointment and casually mention what’s going on. The nurse looks concerned and mentions it could be shingles. (I’m screaming inside). 

Everything changes when my Doc comes in. 
She examines me, I fill her in. And she tells me to “follow her finger with my eyes” Nope. I can’t do that. I try but my eyes want to cross and it hurts my head. That, combined with my angry nodes, sends up red flags for her and the next think I know I have a STAT Brain MRI scheduled, a CT of my neck, I’m put on steroids AND they want me in to see my neurologist immediately. (Well, that escalated quickly).

So, long story short…I love my Doc for giving a shit about my freaky symptoms when I was trying not to make a big deal out it. My brain is still “unremarkable” (which is what cancer patients want their brains to be) and is not (yet) home to cancer. All of the strange symptoms have since disappeared (of course) and I stopped the steroids after 3 days. The CT of my neck was cancelled when my MRI came back negative and no one has any explanations for any of it. Big shocker – they never do.

So, now with all that out of the way, I can concentrate on my upcoming travels. In a few weeks I’m heading to Memphis for a conference with Living Beyond Breast Cancer where I’ll be participating in their advocacy training program Hear My Voice. Then the following week I head to Washington DC for the 3rd Annual Stampede and Die-In.

Stay tuned for updates on my travels/health updates and as always you can head over to The Underbelly where you can also find me. 

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Reflections & The Future

It’s the last week of September and there is no denying that Summer is definitely over. I’ve been in a deep denial over it. Deep. I could ignore it with the temps still tickling the 80’s but that’s changing now and it’s getting serious with helping Adam get college applications and necessary paperwork in before the end of October.

There were no big vacations this summer. Instead, Adam and I went on a few college visits that included a trip to NYC  where we killed two birds with one stone with an appointment at Sloan Kettering for me and a tour of NYU for him. The other college visits included University of Buffalo and University of Rochester, although since we live in Rochester I don’t know if you can technically consider it a ‘visit’.

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University of Rochester

The high-light of the summer was absolutely our trip to NYC. We packed a lot in those 2 days. I even managed to squeeze in something from my bucket list: Serendipity 3!  If you don’t know, Serendipity is this tiny, eclectic restaurant that is most noted for their desserts, specifically the Frozen Hot Chocolate. Reservations usually need to be made weeks in advance BUT if you are willing and able you can take a chance at walking in and waiting for a table. Adam and I went by what Google said were their slow vs. busy times of day and decided to just go and see what would happen. It was 4:30pm so a little bit of a wait wouldn’t be THAT tragic. At 6:20pm we FINALLY got a table! Our waiter told us that the table we were seated at happened to be Marilyn Monroe’s favorite table. Sure – I bet he says that to everyone he serves! We intentionally didn’t get stuffed on dinner so we could enjoy a decadent desert. Let me warn you now – they do not skimp on the dessert portions – AT ALL. The ice cream creations are served on top of a separate plate because they are literally overflowing and spilling everywhere. Let’s just say that experience didn’t do me any favors. I was absolutely miserable the rest of the night but it was totally worth it.

The next day we toured NYU. Wow. I absolutely understand why Adam wants to go to school here. Besides the obvious – being in Manhattan – the ‘campus’ includes buildings all around Washington Square Park. It’s a very different college experience but one that also affords so many more opportunities to do and see things not accessible or available anywhere else.

I’ve tried to pin Adam down on where his heart is with regard to his first choice. He won’t give me a straight answer. I guess we will just have to wait and see when the acceptance letters come and he has to make a decision.

I’m hoping that he and I can still squeeze in one last trip before he goes off to ‘wherever he’s going off to’ after graduation. A lot depends on how far away he’s going to be. If we don’t, he does have a class trip to Italy in April so that will just have to do!

This week I’m headed back to Sloan to meet with a GI Doc to see if we can start to figure out what is causing my ongoing weight loss and nausea. I’ve stopped one of my Cancer meds – Ibrance. I’ve weaned myself off the Gabapentin I was taking for pain and most recently I cut my dose of Topimax (anti-seizure med for migraines) in half. I’m basically down Faslodex for the Cancer and the bare minimum for everything else. The next person who tries to tell me this is a ‘med issue’ is going to get a black eye because so far – I still feel pretty gross and the weight is still coming off. At my Dr appointment on Thursday I was down another 6lbs.

And finally – stay tuned for October. I’ll be headed back to DC to join my fellow advocates on October 13th – Metastatic Breast Cancer Awareness Day to March and participate in the 2nd Annual Die-In for Metastatic Research. I promise you, this year will be epic. I’ll have more information soon but we hope to be able to stream live!!

I invite you to check out a new endeavor I’m part of that I’m wildly proud of:

Viewpoint with Ken Rosato

 

Just a quick follow up post.

The interview I did with Compassion & Choices New York a few weeks ago, aired last night. I wanted to share it here for those of you that may not regularly visit Facebook or Twitter.

I’m very pleased with how this turned out. Sometimes after editing, an interview can look very different than how it really happened. Not so this time. There was literally no editing done (that I could see anyway).

I’m very appreciative of the way Ken Rosato handled the interview and questions. He was every bit the professional you’d expect while also very understanding and compassionate about the subject matter.

Ken, if I’m lucky enough to have you read this: Thank you SO much for giving Medical Aid In Dying a platform on Viewpoint. You’ll never know how much it meant to me.

Our segment is the second one once you click on the link.

http://abc7ny.com/society/new-york-viewpoint/32277/

The Numbers are Not in My Favor

At my last update there was concern over my rising tumor marker: CA 27.29. I had my labs done on Thursday and the decision was made to schedule a PET/CT for August 2nd. The rising numbers coupled with my continued weight loss (I’m averaging about 10lbs a month) and my over all feeling like crud has my team feeling there is enough concern to warrant the scan. 

I’ve been thinking all morning. I’m working in a visit to Sloan Kettering on August 5th to see my Primary Oncologist while Adam and I tour NYU. I’m going to see if the PET can be done earlier that same morning before my Dr appointment. I haven’t been scanned there in a while and due to the mixed reading I recently had that involved the lymph nodes, I feel it would be best if Sloan could do it. Hopefully, all the stars align and it works out. *fingers crossed*

On a lighter note….I recently returned from a quick advocacy trip to NYC. 

Compassion & Choices asked if I would share my story and why I support Medical Aid In Dying with WABC7’s Ken Rosato for his Weekend Show – Viewpoint. Of course I said yes! It’s important to keep this important topic at the forefront and keep the conversations going. It’s the only way to gain traction and enlighten people about why terminally ill people, like myself, want this legislation. 

The interview took place at the WABC7 studio in Manhattan. The same studio that Kelly Ripa and Rachel Ray call home! In fact, Kelly Ripa was live on the air when we arrived.

Corinne Carey, the Director of the NY Chapter of Compassion & Choices and I sat with Ken Rosato for 10 minutes. Corinne spoke about the facts and statistics of the other states that already have these laws in effect. I shared a shorter version of my story and why I’m in support. I also stressed to Ken that I am in NO way suicidal nor do I WANT to die. I want to live. God, do I want to live. That’s so important for me to have people that don’t know me understand. I so hope I made that clear. I think I did.

The segment, I’ve been told will air on July 27th and again in October. I’ll be sure to post links on my Facebook Blog Page and Twitter.

At least I didn’t look as awful as I felt on the day of the interview. 😉

A Big Win For Choice

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Today the New York State Assembly Health Committee voted 14 to 11 in favor of the Medical Aid In Dying Act. This historic vote comes less than 2 weeks after the Bill was introduced by Senator Diane Savino and Assembly Woman Amy Paulin.

I am very proud to have been part of the beginning process of this Bill becoming a legal option in New York State and I hope to continue working with Corinne Carey and Compassion & Choices for as long as my health will allow.

Here is the link to the official press release from Compassion & Choices:

http://www.compassionandchoices.org/medical-aid-in-dying-act-wins-swift-assembly-committee-vote/

Advocacy in Albany

I’ve been working with Compassion & Choices since February of this year when lawmakers became serious about Aid-in-Dying legislation. I feel strongly that all states should have laws similar to those in Oregon and the other  States with Aid-in-Dying laws for those of us with a terminal diagnosis that want another option.

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The goal was this past Tuesday, May 10th, Lobby Day in Albany at the State Capitol. Very careful planning was going into this day. The main part of the day would be teams of people meeting with lawmakers or their representatives to talk about the Bill, share personal stories about why it was important for this legislation and to leave information so that ultimately we could have others support and co-sponsor the Bill to get it passed into law.

I was asked to take an active roll in both the lobby meetings and with the press. I happily accepted in the hopes that what I have to say would make a difference and perhaps open minds to see that this is an individual choice. I realize I won’t change personal convictions and that’s OK but those convictions shouldn’t object to someone else’s ability to choose something for themselves.

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My day began with a radio interview by Capitol Pressroom. I’m interviewed along with Gene Hughes, a disability rights activist, who also supports Aid-in-Dying.  Our interview is to the 13:00 mark.

http://www.wcny.org/may-10-2016-susan-rahn-john-sheehan-jill-furillo-jonathan-e-gradess/#canvas-sidebar

Immediately after the Press Conference began in the Senate Chamber Lobby. In attendance was Senator Diane Savino, Assembly Woman Amy Paulin, Senator Brad Hoylman, many members of the press and our opponents.

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It was so impressive to hear Paulin and Savino speak. They unveiled their new combined Bill – A10059 NY Medical Aid In Dying Act.

http://assembly.state.ny.us/leg/?default_fld&leg_video&bn=A10059&term=2015&Summary=Y&Memo=Y&Text=Y

I shared my story and why this was important to me. It was basically a shortened version of the speech I gave in Buffalo. It was extremely intimidating. There were reporters with cameras a few feet from me. Bright spotlights. I’m definitely not a public speaker. My voice was so shaky, but I think I did OK for being a total amateur.

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Senator Brad Hoylman spoke next followed by Gene Hughes, Assembly Member and Assembly Health Committee Chair, Dick Gottfried Bill Co-sponsor and Rev. Dr. Bill Levering.

I spoke with two reporters after the Press Conference who had more questions for me and then it was time to start the “Lobby” part of the day.

I was part of different teams of 2 or 3 other people. My job was to share my story and hopefully by the end of the meeting the representative for the Assembly Member or Senator we were meeting with would be willing to put the packet of information we would be leaving in front of him/her and have them read it.

In between meetings, I had the amazing opportunity to be interviewed by Amy Paulin for what I think was a Closed Circuit TV program that she does right there in the Legislative Building. She’s a genuinely nice person. Her sister suffered terribly during her decline with Ovarian Cancer. She lived in Georgia where Aid-in-Dying is not available and she stopped eating and drinking to speed up the dying process. It’s because of her Sister’s experience and suffering that she is so passionate about this Bill.

There were a few more meetings before one last interview. I was looking forward to meeting with Senator Robach. Not only am I his constituent but both he and I have attended events at the Catholic Grammer School my Son attended. This meeting was personal for me. Unfortunately, he was on a call with the Mayor of Rochester and not able to meet with me. I was able to meet with one of his staff and shared my story with him and my connection with the Senator. I urged him to convey why this was so important to me and he assured me he would. I believe him. With tears in his eyes, he hugged me.

My day wrapped up at YNN with Corinne Carey, Director of Compassion & Choices New York, Gene Hughes and my Public Speaking Mentor, Greg Menkee. We met with Liz Benjamin who hosts a political show called Capitol Tonight. Via Satellite was Senator Diane Savino.

As I got into my car and headed on the long road home, I reflected back on the day and all the people I met. I was really overwhelmed at how many people stopped me throughout the day to thank me for speaking, for being brave, for being a voice for those who can’t. I don’t think I’ve ever been hugged more in one day than I had in Albany. Reporters hugged me, Lawmakers hugged me, other advocates hugged me.

It validated that my belief, my stance on this topic and this Bill, my desire to advocate to make this a law in NY is absolutely worth it. It’s worth it because it’s also important to so many other people. It’s worth it because if my voice can help even a little, even a tiny bit, it will be a lasting legacy that my Son can be proud of.

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I’m A Fraud

I’ve been holding out on writing anything lately. There’s so much rattling around in my brain and it’s taken me a while to sort it out.

It’s kind of like when you open up a jigsaw puzzle and all those pieces fall out in a big pile. None of it makes sense. Some of the pieces are even stuck together in the wrong way. You know once you sort it out it will be the pretty picture you saw on the cover of the box and you’re excited to see how it all comes together. However, right now I need to get the end pieced and the middle pieces separated so I can work on the frame.

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That’s what I’m trying to do now. I’m trying to get the pieces in my head separated so I can start to work on the frame.

You see, many people see me as a strong person. A strong advocate and voice for the Metastatic Breast Cancer and Aid-in-Dying Community. And while that’s true, that’s just a small part of who I am. Others see me as a fierce and loving Mom of a smart almost Senior in High School Son. That’s also true. Still others see me as a loyal, “I have your back friend”. Another true statement.

What many people don’t know, what they don’t see because I hide it so well is that I’m actually a very scared, paranoid, anxiety consumed ball of nerves with an unhealthy load of guilt that I carry every day that gets heavier with each friend that died prematurely.

And that makes me a Fraud.

I push those emotions down. Stomp them down until they are all jumbled together like those puzzle pieces in the box so I don’t have to see them. Or deal with the how that finished picture will look.

So, I keep pushing the pieces around, because I havent been willing or ready yet to start working on what needs to be done. But that’s about to change.

I’m tired of being a Fraud.

I’m tired of ignoring my feelings because it makes others more comfortable. I’m done not being true to myself. I’m done not speaking up or backing down from a fight because others don’t fight fair and it’s easier to just take the high road. I’m done being bullied and letting people use my illness as an excuse to push their own adjenda.

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I’m going to dig deep and find the person I was before Cancer. I know she’s there. I know I don’t have to let that part of me go just because some people want me to believe she’s gone. Those are the people I need to ignore because they don’t believe in me nor do they have my back. Those people are the real Cancer in my life.

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Be patient with me as I go thru this process. I will still update on my medical stuff, upcoming PET Scan, which is May 16th. We will get to see how the Ibrance/Faslodex has been working.

You can follow the day to day updates on http://facebook.com/stickit2stage4