cancer

Let’s Talk About Bucket Lists

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Bucket lists.

They’ve always made me itch. From time to time I’ll hear friends talk about making their list or they will post pictures with a lead in of “Well, I checked this (whatever ‘this’ is) off my bucket list.” I immediately think about what happens when they finish the list or worse; they don’t get to finish because their health suddenly takes “that turn” no one wants to happen. Because of that, I’ve associated bucket lists with bad karma and never really put one together. I’m already living on borrowed time, why would I wag my finger in the face of fate just begging to get a clap back?? Ask anyone, I can be a pain in the ass with the whole – “no one’s going to tell me what to do, if I want to do it, it’s happening” but this is a whole other animal and I don’t think I’m ready to poke that chupacabra. Know what I mean?

All that being said. I still don’t have a formal list. Not even a Post-It note. However….

There has always been one thing, just one, that I’ve wanted to do. Even before cancer became my dark passenger. I had even kind of resigned myself to the fact that it wasn’t going to happen.

Then . (holy shit) . It . Happened.

What I consider a once in a lifetime opportunity landed in my lap to go home. Well, not where I grew up, but close enough. San Francisco, California. This was huge. I haven’t been home in 25 yrs. I truly believed I was going to die from this hideous disease without ever going back. The ironic thing is the way it worked out, I missed my 30th High School class reunion by four days but that was OK. Totally, absolutely, 100% fine.

This past Wednesday, two days ago Wednesday, I got on a plane and flew west. It was surreal. It really didn’t hit me until the plane touched down. As the plane taxied in and as I looked out the window, the familiar mountains in the horizon was like a hug to my senses. I cried. I cried the same way I am now typing this on the plane back (looking absolutely ridiculous to anyone that may catch a glimpse of me. I need a damn Xanax)

Oh those mountains
San Francisco Neighborhoods are Awesome

I only told one person I was coming home. There was only one person that was important enough to occupy the precious time I had. I only wish it could have been two. Both classmates. One from elementary/junior high and the other from high school. Unfortunately, Laurie, my dear friend from elementary school tragically died in 2011. That will always be my biggest regret, not coming back in time to see her.

I was able to give the biggest hug to Melanie. She’s no slouch giving hugs back! We had the best time catching up and hanging out. It was like I’d never left. Kind of. We ended up at at a casual neighborhood pub that made the evening even more memorable. We had no idea we walked in on trivia night. We opted out which lent to even better comedy. (We were compared to the old men on the muppet show but in a good way – I swear).

Our “30th Reunion”

It was the most amazing trip. I cannot emphasize this enough. This was everything.

I still don’t have a bucket list. After this week, I honestly don’t need one because I completed it without ever needing to make one.

To those that made this all possible (the whole thing), I could spend the rest of my days thanking you and it truly wouldn’t be enough.

Seriously, Thank you.

The Underbelly – Changing Breast Cancer Narratives

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In my last blog post, I left a link at the bottom of the page to a project that I’m involved in with two of my closest friends – Melissa McAllister and Melanie Childers. (I hope that you clicked thru and took a look!)

The Underbelly was an idea conceived by Melissa and Melanie after many conversations about all the harsh realities that come with having a diagnosis of Breast Cancer and the aftermath of it all. Everyone hears of the “happy celebrations” and “bell ringing” after treatment ends but no one ever talks about what REALLY happens. The issues that can arises after surgeries, the depression, the feelings of isolation, how your body changes with treatments, PTSD and the list goes on. Men and women need to talk about these things and many feel they don’t have an outlet for these conversations or a safe place to go to read about others with similar experiences.

The flip side is what those dealing with Metastatic Breast Cancer live with. The shock of getting a terminal diagnosis, having to be in treatment for the rest of our lives, having to process grief sometimes on a daily basis when another friend dies, the anxiety that comes with every blood test, scan and test.

Factor into all of that there is a discord between those that are diagnosed with Early Stage Breast Cancer and those living with Metastatic Breast Cancer, the three of us wanted to create a community all of it’s own where it would be inclusive of ALL of those that have ever had a diagnosis of Breast Cancer – past or present. The Underbelly would be a place where we could share real, raw stories that were not ‘sugar coated’ or covered in ‘pink platitudes’. And not just our stories – we invite and encourage others to contribute their stories and experiences.

And that’s just what we did.

In August, The Underbelly had a soft launch of it’s website and Facebook page. We were extremely pleased with it’s success and the embrace we received from the Breast Cancer community.

We have now expanded our mission and we have some pretty lofty, although very attainable goals, for The Underbelly. However, to make it all happen we have started a Crowdfunder and have set a goal of $20,000.

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The magazine is not supported by way of subscription fees, which means we get to deliver amazing content to our community for FREE. The costs of running the site are around $2000. That includes hosting, a code monkey on the backend, equipment, and storage.

We’d like to pay back our initial investors (Melanie’s awesome folks) at $2000.

Most importantly, we need YOUR help to fulfill our commitment to providing a source of financial assistance in and for the breast cancer community. Cancer really sucks your wallet dry. Giving women & Men who’ve been diagnosed with breast cancer an opportunity to tell their stories and make a little cash on the side is incredibly helpful, so your support will directly help contributing writers get PAID. Three articles/writers a week @$50 per article for 9 months is $5400.

We also intend to grow and expand our reach and voice in the community, including podcasting and video. For that, we need funds to invest in joining with other projects, traveling to conferences and events, advertising, and sponsoring causes that positively impact the community.  We estimate $5000.

To continue growing and supporting ourselves, we will also be launching a store to generate income and distribute super cool swag, such as bracelets, t-shirts, mugs, posters and other awesome items. $2000 will go toward launching the shop.

Additionally, a percentage of proceeds from certain merchandise sold through our store and this crowdfunder will go to nonprofit organizations who either fund metastatic breast cancer research or directly assist patients in need. 10% of the bracelets will go to the non-profits we’re supporting, around $2000.

And of course, if fully funded, the administrative fees for running the funder itself come to around $1600.

As of last night we reached 16% of our goal!!  Not bad for launching just one week ago today, but we are still a long way off.

We have some pretty nice “perks” that can be chosen when making a donation. There are 6 different Mala Bracelets that represent the 6 Non-Profits that we support and each were designed in their respective colors by our own talented Melissa McAllister. 10% of each bracelet goes back to that NPO.

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Your contribution may support a writer directly, or get your ad in front of our email list, or a full sponsorship of the site for a week, two weeks, or a whole month!

If you can’t give to our campaign, that’s OK!  I still love you an awful lot.

It would be SUPER awesome if you’d share our campaign on your social media platforms or even this blog post and encourage your friends to help us out. You never know who might be looking for something just like The Underbelly, or who might want to share their story!

Also – and this is a pretty big deal, at least I think so. TODAY – well tonight at 7pm EST. I am going to do a Facebook LIVE on The Underbelly Facebook page and broadcast to whoever may be out there to talk about why The Underbelly is important to me and perhaps if some of you pop on and don’t leave me hanging you can even ask me some questions. I’m kind of nervous about doing this but Melissa and Melanie have already done it and today is my turn and I can’t let the team down!!  So, set an alarm – mark your calendar – SOMETHING!!!  Please SHOW UP!!

The Underbelly – Changing Breast Cancer Narratives

My Son The Doctor

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Ever since my son was 7 yrs old he had a love of computers. He discovered YouTube and found that he could watch courses taught by MIT professors. He took notes. He was fascinated. He taught himself programs like C++, Java and Unix. We were always at the library checking out books on Application Development or Web Development. I was happy he found something that he liked and was good at.

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As my son got older he began to get savvier in his knowledge and his network of friends. He began doing projects for different people and was being generously compensated for it. He was updating websites, creating ‘universe’s’ for games and developing online stores.

His technology experience was also well known at school and was often asked by teachers to help when there was an issue with a computer or smart board. If you asked anyone, they’d tell you HE was the IT Department.

When Adam was 10, he discovered a free local computer magazine. He took it upon himself to contact the publisher and ask if he could write an article for the magazine. The publisher wrote back that he could with my permission. Adam excitedly wrote an excellent article about a program created by MIT designed to get kids interested in programming. I still have about 50 copies of the magazine.

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Last February, Adam started working for a well known General Practitioner after school. Adam was very impressed with the Dr and took a shine to him.  The Dr was aware of Adam’s strong technical ability and had helped with a few projects the Dr has asked him to help with.

This past September when Adam started his Junior year, he decided that he wanted to pursue Medicine instead of Computer Science. In making this change he added a third Advanced Placement class to his schedule.

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Today when he was at work he told the Dr that he is going to go Pre Med and asked him for his advice. Adam told me the Dr was very pleased and told him he was welcome to shadow him with seeing patients. He also gave Adam other great advice that Adam plans to pursue.

I’m so overwhelmed. I always knew my son was exceptionally smart but it never occurred to me that he would want to become a doctor some day. Thinking about it brings tears because I can’t say if I’ll be here to see him reach this goal. Right now, I’m just trying to make sure I’m here to see him graduate from High School. I would give anything to see him graduate from medical school but the likelihood is slim. I’m not being negative, I’m being realistic.

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But how amazing??  My son…the Doctor!!!

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Door #1, 2 or 3

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I have been on a medically approved break from my Aromatase Inhibitor since June. Since then I have been able to lose 15lbs and I’ve felt so much better.

While I’ve been on this break I have been seriously considering making this break permanent.  Whelp, my Oncologist got wind of my thoughts and wrote me an email. She was very stern and let me know that this was only to be a short break and that at our next meeting we would discuss other options.

Fuck

Last Wednesday was my appointment with my Oncologist. I repeated my thoughts and told her that quality of life was becoming a higher priority for me. Let’s face it, at some point I will have progression. This will happen on or off meds. No one knows when this will happen. I’m very comfortable rolling the dice at this point.

BUT…I did hear her out.  My Oncologist offered me 3 different Aromatase Inhibitor options: Anastrozle, Toremifene or Raloxifene.  The first two have the same side effects as what I was on but includes blindness and urinating blood. FUN!!  The other includes more weight gain, swelling of hands and feet and more.

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Her other option was sending me to a surgeon that would give me a lumpectomy. She would only feel comfortable with my choice to stop meds if I removed the cancer from my breast. She told me that the MRI I had in June did show uptake as did the deeper tumor that we were unable to biopsy.  My metastasis bypassed my lymph system and went directly to my bones so she explained that doing nothing and taking no meds is like playing a game of Russia Roulette with a loaded gun. It wouldn’t be a matter of IF but WHEN.

Fuck

Tomorrow, I see the surgeon. I will discuss with her the lumpectomy and I will also ask about a mastectomy as well.  I know a mastectomy might be overkill and a much harder surgery but if I’m going to consider surgery I would be remiss in not covering this topic.

Then I have to make a decision:

Door #1: begin a new Aromatase Inhibitor
Door #2: Lumpectomy  or
Door #3: No surgery, No meds

I’ll be honest and I know I’ll catch shit for this but, gun to my head, if I had to decide right this second…I choose Door #3.  Here’s why….

What if I don’t progress for 5, 10, 15 yrs? What if I never progress before something else does me in? What if??

After how completely shitty I’ve felt taking Exemestane and the 4 weeks of Letrozole, I’m not in a hurry to go back to that. Yes, I know chemo is much, much worse. But who knows when I will have to pony up to that bridge and (more brutal truth) I’m not certain I will decide to do chemo. There are so many considerations that will go into THAT decision. First and foremost will be what age and where my son is in his life.

I realize I may catch all kinds of shit for my lack of drive and perseverance when it comes to my treatment but please understand, I’m in a different place in my life. I don’t have young children, I’ve already had some amazing experiences, vacations and career. I’m pretty content and whether I have 2 yrs or 20 yrs, I don’t want to be sick, hurting or be a drag on my family.

So….this is where I am. I have a feeling I’ll have to decide sooner than later and by that I mean this week.

I will update again soon…