memories

When You Wish Upon a Star – My Magical Month of May!

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May was a BUSY month! So many amazing milestones were reached I’m still not sure if they all happened. Every day I look at all the pictures taken over the last month & I thank the universe for allowing me to be a small part of it all.

It all began with double graduations from the University of Rochester for my son & his fiancee. We weren’t sure what would happen thanks to Covid-19 until a few months prior. It wasn’t exactly ideal but what matters was I saw them both in their caps & gowns, heard their names called & what every parent dreams of; watching them both walk the stage to receive their degrees. Well, degree covers. There were five ceremonies in all spread out over three days. The big commencement & two-degree major ceremonies for each of them. All streamed live for parents and loved ones to see.

The Graduates

Immediately after the pomp and circumstances, we switched into wedding mode. They chose to get married in my daughter-in-law’s home state of Oregon. I don’t know how they planned the wedding while attending their last year of college AND working. All the while not even sure it would all happen due to all the restrictions and rules for the pandemic. If it weren’t for her parents, it would have been a nightmare for both of them. When it comes to inlaws, Adam won the lottery.

Rehearsal Dinner

They had a beautiful day weather-wise. Their ceremony and reception took place outside. Making for an ideal setting. Clear blue skies and warm temperatures all day. Actually, it was damn hot.

If it had been a contest of who cried more, Adam won. Hands down. It filled my heart to see all the emotions he was experiencing. There was no doubt just how much in love he is. The bride was stunning. She glowed with happiness as her father walked her down the aisle.

After the ceremony, there was a lovely dinner, toasts to the bride and groom, something called The Shoe Game that involved all the wedding guests and llamas. Yes, llamas.

Llamas Anyone?

When I returned home, I was given the all-important task of babysitting their five cats and dog. That week I was literally a cat herder. No easy task I might add.

The newlywed’s honeymooned at Disney World in Orlando, Florida. They had a fun and relaxing time. I won’t lie, I was a lil bit jealous.

Epcot

When I began this blog, my biggest goal was to see Adam graduate from high school. If someone had told me I’d be there for that and so much more milestones in his life I would have laughed and laughed. I never let myself hope for anything beyond the one goal I would set for myself. I was too afraid of hoping for things I’d never be part of. Cancer forces one to not look too far into the future no matter how optimistic. I don’t say this to put anyone off or to be a downer. I say it because of how grateful I am. I must acknowledge how incredibly lucky and appreciative I am.

Which brings me to share, with gratitude this last bit…

Just in case anyone doesn’t understand the photo above, these should do the trick!

January 2022

I’m going to be a *gulp* GRANDMOTHER!!

Truth be told, I’ve known for a while. This has been the HARDEST secret to keep. Those that know me, understand how physically painful this was. I was SWORN to secrecy until other family members were told. Nothing is worse than finding out about important life events than on the internet. So, how long have I known, you ask?

I have a magical new goal!

The Quiet Time

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Most mornings, I am the first one awake. I like that. I have a routine that I follow. I go into the kitchen, turn on the Keurig, put hazelnut creamer in my coffee mug, and while the coffee is brewing, I prepare Bella’s breakfast. The first of her several small meals throughout the day. I grab my coffee, my meds, an “after breakfast” cookie for Bella, and head for the couch. While I check my phone to see what I missed overnight, Bella & her full belly snuggles up next to me & falls asleep.

Morning puggle snuggles

This quiet time is my favorite time of the day. The only sounds that I hear are the clock’s ticking on the dining room wall, the soft whooshing of the traffic below us & Bella snoring. It’s peaceful & relaxing. My Twitter feed is full of tweets about what’s going on in the world & updates from friends sprinkled in between them.

It’s ironic how the brain triggers the memory of events that happened in the past. Songs, smells, places, reading a book, or specific dates. It happens even when we don’t mean to or even want to, depending on the memory it triggers. That happened to me this morning. Not just one memory, but two.

These memories are both exceptional, each in its own way. They are separated by fifteen years. I can recall every last detail of each memory. When I think of them, it’s as if I am back in that moment again. I hear the sounds, what was happening around me, and who was there with me. I even experience the feeling as if it’s happening for the first time. I don’t always remember them in the order in which they occurred. However, one always triggers the other. It’s like being in a time machine but without the “Back to the Future” Delorean. Does this happen to everyone?

This morning it happened backward. My memory placed me back in one of the many waiting rooms at Memorial Sloan Kettering in Manhattan. I was waiting for the nurse to call me for the first of four scans I was having. I was sitting in an armless chair; the bright sun came through the windows on my left. Above me, in the corner of the room, the TV was on. Good Morning America was on. A couple won a contest to be married, live on their show. The hook was that John Legend would also be there to serenade them with his wildly popular love song: “All of Me.” Later that afternoon, I would be in the exam room sitting next to my Oncologist and, on the other, my husband. She read the results of my PET scan. It was the first one I had after I started treatment and the first time I heard: No Evidence of Disease. I was confused. My doctor put her hand on mine, looked me dead in the eyes, and said, “The cancer is not detectable. The Aromatase Inhibitor is working. This is the best possible news.” It took a minute to sink in. I cried & laughed at the same time. That was seven years ago.

GMA 2014, Courtesy of ABC News

I will always be grateful for that memory. It’s probably the only positive, happy experience I’ve had living with cancer. I had hope again. Hope that cancer had taken from me. That feeling is what triggers my next significant memory. It was a snowy day in 1999. I had the ultrasound that every expectant parent looks forward to. I saw my son, for the first time, cramped in my belly. He looked so chill. The tech pointed out his tiny little finger buds, his spine, his legs. She was reassuring that all was well. Did I want her to tell me the sex? she asked me, YES, I wanted to know. She moved the wand back and forth over my stomach. “There it is,” she said. “You’re having a boy” The rest of the story can be read Here

As I sit here remembering these two events, I think about what’s to come this month. My son & future daughter-in-law are graduating from college. They will have commencement ceremonies this year. While the No Visitor policy is still in place, I’ll be watching the live feeds. The following week I will have fully realize a dream I never imagined I would have the honor to attend; my son’s wedding. I am so looking forward to watching his bride walk down the aisle to exchange their vows.

I adore these two

I’m still trying to wrap my brain around all of this. When did he grow up? Most parents who get to this point in their children’s lives want to turn back time to when their kids were little. I honestly don’t. I cherish this time right now as he builds his life with his soon-to-be wife. They both have accomplished a lot in the last four years. I couldn’t have imagined a better future for my little pup.

My lil pup

At the last minute, I chose to have my PET scan last Friday. I wasn’t going to do any significant medical stuff this month as I didn’t want anything to put a cloud over these monuments occasions, but in the end, I knowledge is power. I didn’t post anything about it or the “look at me; I’m having a scan” picture on social media. Many of my friends are dealing with their health that it just didn’t feel right. I realize it shouldn’t stop me from talking about what’s happening with my own health. It’s separate, but I guess I’m becoming more empathetic now that I’m in my 50’s. Is this what happened to the Grinch?

May 2021 will be the most fantastic month. I am going to take in every second & enjoy it to the fullest. I feel so, so fortunate, and I thank the universe for keeping me No Evidence of Disease for now.

And God Laughs

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I should be sleeping. It’s 2:33am. I have to be up in four hours.

I am in Albany as part of a campaign for New York’s Medical Aid in Dying Act. The campaign, 50 Reasons by Compassion & Choices, highlights 50 stories of real people and their reasons why they support the bill. Its genius. The people included aren’t just terminally ill patients; they are members of the clergy, doctors, caregivers, loved ones. They all have personal stories; reasons that provide their perspective.

Today is my day to share my reason.

Normally, I can do this with my eyes closed. I’ve been coming to Albany and have been involved in this advocacy for years. I’ve blogged about it in the past. My reasons then were very clear. I didn’t want my son to see me actively dying, lying in bed for who knows how long and remember me that way. I was working hard to create special memories for him. I wasn’t going to have the end of my life strip that all away. While that’s still true, he’s much older now. There is another reason that has moved to the top of my list.

(This is the most unnerving coincidence – I know God is laughing)

Exactly one year ago, I published a blog What The Fuck Is The Reason. My dear friend Melissa died the night before from metastatic breast cancer. I had sat with her family, her best friend Chrysta, and watched countless others come and go as they checked on her or said their goodbye’s. There were a few nights I stayed with her Aunt and close family friends so Melissa wasn’t alone.

Facebook Memories Suck

Melissa lingered for nine days. There were times she was in pain but unable to communicate beyond calling out. She was visibly restless, and fluid was building up in her lungs. It was incredibly frustrating for those of us sitting there bearing witness. We were mad. We were upset. We felt helpless. I can’t fathom how Melissa felt being trapped in a body shutting down and not being able to communicate what she needed.

Death is not how it is in the movies or on TV. It’s not a natural, peaceful, falling asleep death. If you’ve never sat bedside for anyone while they died and thought that’s what it was like – you’re greatly mistaken. Cancer patients who have been on pain medications for a long time have it the worst. There is a level of tolerance that develops. A false understanding exists that with the right ”formula” of morphine, any pain can be managed. That may be true for some, but not everyone. The line between palliative coma and death is razor-thin.

Those days and nights I spent in Melissa’s hospital room gutted me; not to mention how it impacted her family, those that loved her and her sweet daughter. I don’t ever want to be trapped in my body like that. To put my loved ones through that. Those nights reinforced to me how important it is that there be Medical Aid in Dying laws in every State. Everyone with a terminal illness should have access to this option if they want it.

It’s not a religious issue – It’s a personal choice.

It’s not suicide (OMG It’s NOT) – I want to live. Cancer has other plans.

I think I always knew about the correlation in dates between yesterday/today and last year. I just never let my mind REALLY go there until it forced me. Always the middle of the night. Thanks, brain. While it will be familiar, it will also be different as I see staffers and lawmakers. The tears I know will come will be about Melissa.

I’m livin’ the dream, Melissa.

Livin it for you babe.

Two hours until I have to be up…..

August Is My Trigger

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A trigger is something that sets off a memory tape or flashback transporting the person back to the event of her/his original trauma.

 

Every year since 2013, August has been my trigger. There is no getting away from it. I’ve tried. I keep trying. Every week of this month has a day that I can’t escape from. Every one of those days plays back in my mind like a scene in a movie. A bad dream that I will never wake up from. The sounds, the smells, even the tone of the voices. It all comes back.

They say that one way to face your fears or anxiety is to talk about it. Verbalize it. Take the power away from it. That may work for some people but that hasn’t worked well for me. I’ve tried it. Every year.

Once in a while I try to bring up a memory early in the month: “Today’s the day I went to the Doctor, remember that?” The reaction is never consoling or understanding; its more like: “Why would you want to remember that?” or “Ugh I’d rather not” or worse…silence.

Believe me, nobody but me knows better what it was like living thru that month 5 yrs ago and every day since. Not that it’s all been shit, but what makes it all suck worse is when my trigger is made to be about someone else’s feelings. That just makes me want to throw things – at other people.

I have gotten better at having meltdowns alone -at night, in the dark, where it’s just me and my pup. I still do have those days, when the emotions from whatever memory that plays in my brain, creeps out. Those days I play the “I don’t feel good” card and keep to myself having as little interaction with anyone else as possible.

Then there are days like today. Today was my monthly check-up with my Oncologist and the dreaded Faslodex and Xgeva injections. Everything was fine – Until I pulled into the parking lot of the Cancer Center. My mind flashed back, just for a second, to my very first appointment. Before treatment even started. When I parked my car, I had to sit and wait until I was able to compose myself before I could go in. I couldn’t stop it. I tried. I was so pissed.

I get so angry at myself when it happens. I want to grab myself by the shoulders, shake myself and say:

“This is ridiculous. You should be on top of the world. You’re still alive after 5 yrs with this bitch. Stop it”

I wish it was that easy.

Simply put, August is 31 days of PTSD, Flash Backs, Panic Attacks, Anger, & Sadness, wrapped up in a blanket of Survivor Guilt. And it’s not over yet:

 

August 2013 Timeline

August 7 – Saw GP possible kidney infection

August 9 – No infection, Sent for CT

August 13 – Sent for MRI

August 16 – Told over phone “Cancer found in bones”

August 24 – DVT Blood Clot

August 28 – 7:30am PET/CT

August 28 – 5:30pm – The phone call that changed everything.

 

So, if you happen to see me on August 28th, the day I recognize as my 5 yr Cancerversary, no words are needed. Just raise a glass of whatever beverage you’re drinking that day and offer a toast to whatever additional time the universe feels I am worthy of.

Here’s hoping the universe continues to be extremely generous.

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.

I Still Have Work To Do

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Five years ago this August, I was told I had 2-3 years left to live. Five years ago I wasn’t ready to die. Today, I’m still not ready, but it’s not up to me; so until that day – I have work to do.

When I look back over these years since cancer invited itself into my life, it’s a tapestry of faces, friendships, events, gatherings, meetings, and experiences that literally takes my breath away. I have a very difficult time reconciling the fact that none of these things would have happened and I never would have met the people I’ve met had it not been for cancer. I didn’t want it then and I sure as shit don’t want it now. But I can’t have one without the other. If there is a God or higher power, he or she has a really twisted sense of humor.

In the world of cancer, especially early stage Breast cancer, doctors tell patients that once 5 years “no evidence of disease” is reached, you’re allowed to exhale. When you have Metastatic disease and you’ve lived 5 years, you’re basically living on borrowed time. I am extremely fortunate that I have had a good response to the treatment I’m currently on, however, my eyes are wide open and I am fully aware that at anytime this could change. I am now racing to beat a clock that’s ticking down to an unknown time that will only be revealed in the moments before the big hand strikes twelve.

I have been a vocal advocate for Metastatic Breast Cancer for damn near all of these 5 years. I’ve shouted on my own. I’ve lent my voice to others when needed. I’ve been part of new projects. I’ve helped launch grassroots activist organizations.

Through all of these things, I’ve met, worked with and learned from the most amazing people. Many of whom have since died. Each person has left a footprint on my heart. One individual in particular not only left a footprint but she also took a chunk of it with her when she left us.

Beth Caldwell is that person.

In the months before Beth died, we spoke frequently about how we needed to keep advocacy and activism at the forefront. We were making plans to meet at the last big conference of the year the San Antonio Breast Cancer Symposium and discuss a plan to keep moving forward. Sadly, that meeting never happened.

As most people did, I respected the hell out of Beth. I still do and always will. More importantly, we were on the same page of the same shitty book when it came to what we felt needed to happen. We needed to shake shit up, make noise, storm the gates and take no prisoners if we wanted people to hear us and help save us. Enough was fucking enough. Lives are at stake – our lives. When she asked me to help get METUP off the ground, I was all in. When I stepped back to pursue other projects, I continued to support Beth & METUP. Beth was a force. Beth roared and people listened. She roared until she couldn’t.

It’s important that Beth’s vision continues. She worked too hard, for all of us, for the ball to get dropped now. I can’t let that happen – I won’t. I know she’d kick my ass if I did and I’m not ashamed to admit I’m a little afraid she’d come back and do it.

That being said, It’s my intention to use this borrowed time to do Beth proud. I will be taking an active leadership role with METUP.  It’s my intention to help grow the organization with active volunteers so we can continue to address the important issues facing Metastatic patients through direct action.

I encourage anyone that is interested in getting involved with METUP or those that want to learn more about what METUP is all about go to METUP