Read if I Die

AUGUST 28, 2020

Sitting on my desktop is a folder called “read if I die”.  It’s been sitting on my Mac for 13 years. My kids know about it, they’ve never opened it, but they know it’s there waiting for them.  It’s mostly filled with practical information.  To make things easier when I’m gone.  From time to time I open and read through the one letter I wrote to them.  I know that no matter what words I leave them, it will not be enough. 

I write of my never-ending love for them and my pride in being their mother; and for the last time I apologize for having had breast cancer.   

I’ve tried very hard to find purpose in life. Especially since June of last year when I received such a terrible blow.  After 13 years of living with metastatic breast cancer - cancer which leaves the breast and spreads/metastasizes to other organs (in my case brain, lungs and bones) I was additionally diagnosed with Leptomeningeal Disease (LMD). 

 LMD is when the cancer cells spread through your CSF (central spinal fluid) up around the lining of your brain and is aggressive as fuck. And difficult to treat.  Blood brain barrier.  It’s complicated.  LMD has a terrible prognosis. I was given 6 mos. to a year.

At City of Hope, I looked into a clinical trial, but it was risky and involved putting an Ommaya Port in my skull and then pouring chemo into the port.  Sounded awful. I am not about life at all costs, I am about Quality of Life, and the cost has to be reasonable.  Even so, I signed the consent forms; my grown kids and their big brown eyes were there with me.  Ultimately, City of Hope did not accept me on the trial.  I was relieved. 

I began exploring end-of-life options, including California’s “death with dignity” legislation. Talking to hospice, giving away my best purses, and sorting jewelry with my kids. Breaking news to family and friends.

On Amazon, I ordered a large leather-bound Art Journal, imagining that my last few months would be spent making memories. My idea was to take pictures of me and whomever visited and write my thoughts and feelings along with pasting a photo in that journal. Kind of old school.  Maybe even some original art. A way to hold space for goodbyes; love, friendship and shared good times. That was my plan.

Around that same time, I had a talk with one of my friends, actually with a very logical and smart friend whose opinion I respect very much. I needed perspective on quality-of-life and asked his opinion.  I wanted to know what things he’d be willing to give up, and still be okay with being alive.  He shared his views on “reasonable” quality-of-life. I took his words to heart and tried to think about what I would consider a reasonable quality of life. What I’d be willing to accept.

I put all the pieces together for an end of life that had some reasonable quality of life. And I was okay with that plan.  It included spending time with family and friends, the dogs, some writing and some art. I realized I would have to give up Dance; I just didn’t have the stamina. But I still had my friends from dance and I still could enjoy music.

I was trying to stay in front of the light, even in my impending death, I didn’t want to give in to the darkness.  I spent too many of my early teen years feeling invisible, feeling obscured.  Eclipsed.  I prefer the lights on.  
n orchestrating my last days, my plan was to hang out and be seen.  And when pain and vanity took over, and when dignity left, I’d execute my END OF LIFE OPTION ACT, as allowed by the state of California. 

Then in a last-ditch effort, I was accepted onto a Phase I (first in humans), clinical trial looking at using two novel drugs in combo. Thankfully the dose escalation phase was finished, and the MTD (maximum tolerated dosing) was established. By the second cycle I could see that the clinical trial was working. Small cancer nodes melted away flat.  Fire-ants nerve pain improved.  Along with killing cancer, the trial was killing my quality-of-life.

From my first infusion on December 26, 2019 forward, I was not well and had debilitating side effects.  I was over-shadowed by cancer…something I was not used to enduring. 
After going thru 3 cycles on the trial, the one drug I was most interested in received FDA accelerated approval.  I left the clinical trial and returned to my local oncologist to continue on the single drug in hopes of improving my Quality-of-life.

Then--just at the time I was feeling strong enough to resume living a reasonable quality of life-- Corona-Abscura shows up.  And just like that I’m thrown back in the darkness. Filled with fear, I went into double lock down mode and here I am six months later feeling very disconnected and again searching for something reasonable in my quality-of-life. There has got to be meaning along with reasonable quality of life, for me to get up every day. Something to look forward to other than side effects, housewivery and taking care of my Mini dog.

The most valuable and nurturing entity for me is human connection. In real life.  Especially NOW.  With time running out.  I need to see people. And their whole face. Being able to hug. Laughing freely, sitting side-by-side. Driving together. Cooking and sharing meals.  Sharing life’s experiences. In person. In real time. And without fear of a horrid and disconnected death by Covid. My time is running out!

I am dying to leave this quarantine.

I just cannot act on those feelings…that is the divide.  Sometimes my anger at this predicament blows up…into rage, into that ring of fire.  And sometimes my anger turns inward, into sadness and great longing for times past when I could have physical closeness. Be held.

But even a hug would not be enough right now.  Years ago, I remember my wise therapist saying “baby, when you’re starving for a meal and all you’re getting is crumbs, you will never feel satisfied.”

I am starving for a meal. And nothing is enough.

Trees

MAY 9, 2020

Last May my doctor said 6 months, maybe a year.  I stopped talking to the Universe. I didn’t ask for any signs. I didn’t ask the Universe for help. I just wanted to clean out my house and get my affairs as much in order as I could. I wanted to ease the burden for my kids.

Almost every day, I noticed yellow birds in my backyard. Gathering on the old stale wall fountain. Swooping around, undoubtedly to get my attention. Shut up Universe, I thought to myself. I don’t believe in signs anymore. 

Fountains are very finicky.  I couldn’t decide if I wanted to fix the old wall fountain or add a bird bath.  I imagined I’d soon be confined to bed. At least I could enjoy the garden view, especially the Birch trees, a favorite hangout for the backyard birds.  I also noticed that not a single bird was interested in the new bird bath I had purchased. They all still sat around the old murky wall fountain. 

From my bed I have a pretty nice view.  Peaceful.  I can see my garden and the old wall fountain filtered through the long graceful branches of the silver birch trees.

I watch the Birches every year as they lose their leaves and the tree fills with hanging lantern-like stacks of seeds.  Eventually these seed stacks will unwind and blow all over the yard. But before that happens, tiny brown finches, no bigger than the missing leaves, will fill the bare tree in the late afternoons, feasting on whatever bugs are now exposed. It’s a charming show right outside my bedroom window. Birds as leaves. Seeds as lanterns, then flying saucers and I notice the fountain needs water. 

Every spring when the Birches burst green again, they are a jungle gym for the Roof Squirrels. All afternoon the Birches host a variety of birds, squirrels and flying insects. 

One year a friend was over. We were in the backyard and she looked at the naked Birches and stated “your trees are dead”. With a great grip of fear in my stomach, I looked at them too, and wondered if she was right. Did the Birches die right before my eyes and I missed it? It had been a year of drought and alternate day watering. Everything in the yard looked a little dry.

I decided I would try watering them a bit more.  Every other evening, I would turn on the soak hose, quietly, hoping my neighbors didn’t see me breaking the water usage rules. I also started to talk to the Birches. Asking them not to leave me. Telling them I was sorry I had not noticed their thirst. 

After a few weeks, I could see new buds and soon they burst forth again much to my relief. I love these birch trees. They’ve been keeping me company for over 20 years.  The year that my friend thought my birch trees were dead, reminded me of something my mother told me many times in life. “Flori, don’t write the ending.”

So, while I am suffering, and I am afraid, while the whole world is suffering and it is afraid, it is good to be reminded. Take things a day at a time. And don’t write the ending. Because birch trees and people can burst back to life.

I Can and I Can’t

AUGUST 30, 2020

My friend Dikla called me last week. She tells me she’s now been living with MBC (metastatic breast cancer) for 18 years.  And then laughing she says, “my cancer is old enough to vote!” The two of us crack up at this irony. Dikla is one of my Sheroes. And a dear friend. And an inspiration.

We met 13 years ago, when I walked into a UCLA cancer support group. I could barely find my way to the room on the top floor of that 300 building. Hyperventilating, with red eyes from non-stop crying, I had just been diagnosed with Stage 4 of 4, terminal! metastatic breast cancer (MBC).  Seven years after finishing treatment for early stage breast cancer!  (Nope, no family history. Yes, I found the lump myself. No, it wasn’t in my lymph-nodes. No braca gene.  Yes, I was supposed to be “cured”). 

Walking into that Living Beyond Limits group, my head was spinning.  Celeste, our facilitator, was one of the loveliest women I’ve ever met. She is a pillar of grace and kindness. And love and support.  She still facilitates that support group, although now via zoom.

13 years ago, that group was my lifeline. I met Dikla that first week. Plus, many others—probably 10 of us around the table. Month after month I realized many of the original women had started to die. It was heavy, and it was freaking me out.

I said to Dikla, pretty soon we will be the last girls standing—maybe we should stay away from group for a while. We laughed, but the fear, sadness and heartache were real.  We continued to show up.

Every three weeks I’m supposed to have treatment. An infusion. Because of Covid, I have to go alone. Thankfully I love my nursing team and because I’ve been in treatment for so many years I feel oddly at home there.  This new drug, called Enhertu, which to me sounds like I-hurt-you, is a cutting-edge treatment for heavily pre-treated people with MBC.   What is it, you ask? Enhertu is an ADC (antibody-drug conjugate) targeted therapy. The combination of the topoisomerase I inhibitor and the linking compound is called deruxtecan. The linking compound attaches (conjugates) the fam-trastuzumab to the topoisomerase I inhibitor chemotherapy. Get it? Well, I do. 

Most of us living with MBC have an honorary PhD in Oncology.  I certainly do.  It took me about 3-4 hours of dedicated nightly reading, researching, watching lectures, listening to science panels, and looking words up, one by one by one by one.  After three years, I was conversant.  By year four, I could weigh in on my own treatment plan and suggest outside the box thinking on drug combos to my team.  I was treated as a colleague but most important, I was respected as an expert on my own case. 

Every three weeks when it’s go-day, I think “I can’t do it again”.
I can and I can’t.
I’m the little engine who obsesses.

It’s been eight months of every three weeks, I can and I can’t.
The little engine who chemos. 

My doctor has done two dose reductions to try to help mitigate my side-effucks.  By the way, I have doubled-down on calling side-effects side-effucks. This was a term I recently heard from a new Twitter friend, Silke. When I attributed it to her, there was a long thread of metastatic breast cancer survivors attributing it to another person and another person and another person. Whomever the original clever-creator, it is my go forward term from now on.

I can and I can’t.
I don’t know if I can take another cycle. 

It’s hard to describe the days following chemotherapy. I feel poisoned. Rotten inside. Like I drank battery acid.  Nauseous.  I have no shortage of meds for my meds.  Steroids to help the nausea.  Anti-nausea pre and post meds. It’s so much medicine, but it’s the only way through. 

This drug is so tough. We have a private Facebook group for people on this regime.  In December 2019, when the group was started, we had about 50 members.  Now we are over 250.  That is still a tiny amount of people for an FDA approved regime.  Usually a chemo-specific Facebook group will have membership in the thousands. 

I have a handful of friends who are still on the original clinical trial for this drug.  Still enduring arduous scans every 6 weeks, tons of blood work, all day observations, and rigid rules of the trial.  These friends have made it possible for me and others to have access to this new drug.  And they’ve also managed to stay on this regime for two years and counting.  They are well past cycle #34. I just finished cycle #11. 

I can and I can’t.

I’ve used my time this summer to become involved in two different initiatives to make life better for people living with MBC. One of the initiatives has to do with patient centered dosing, and how people with MBC should be having conversations with their oncologists PRIOR to starting a new regime, to determine the appropriate starting dose based upon their unique case.  We have gathered data from over 1200 people living with MBC and will present our findings later this year at an annual prestigious conference. 

I can and I can’t.

Another initiative has to do with making clinical trials more accessible for patients living with breast cancer brain mets. When breast cancer metastasizes, or spreads to other organs, like the lungs, or bones, or brain, it is still breast cancer.  It doesn’t turn into lung cancer, or bone cancer.  The same is true for when breast cancer spreads into the brain.  Commonly called mets (metastasis) brain mets are tricky fuckers to treat. 

Patients with Brain Mets, LMD (Leptomeningeal disease) and CNS (central nervous system) mets have a have a much worse prognosis. We’re harder to treat.  Therefore, many clinical trials hesitate to add in this population because it can make their trial results look worse. Yes. Read that again.

I can and I can’t. 

I am working with a team of metastatic breast cancer patients, and some big Pharma partners, and some fabulous allies, under an alliance, to insist that big Pharma include people with Breast Cancer Brain Mets, LMD, and CNS disease in their clinical trials, early on. To give us a fair chance to live. Sharing our stories is the best way for this to happen.  Oftentimes scientists and researchers do not have many opportunities to interact with actual people living with MBC.  There is a disconnect.  Our first step was to share our stories via zoom, to create connection.  It was an inspired meeting. 

I can and I can’t.

Today I feel shaky, weak, stomach pain, short of breath. I’ve been running a fever, have a cough.  All typical side-effucks of Enhertu.  I feel Scared. Anxious. Alone.  My friends call and they check on me, but I’m not well enough to sit outside today. What would be great, is to have people in my background. In my physical space. The sounds of life in the background of my house, while I’m resting.  No can do…Covid has messed that up.

I click online and see some of my beautiful advocacy friends working hard.  They are busy raising money, pod-casting, sharing their stories, promoting diversity, amplifying Black Lives Matter, teaching, organizing conferences, networking, giving support, encouragement, sharing life photos, kids visiting, sharing links - sharing vital information that may be lifesaving in helping others live a bit longer and a bit better.  I see an online community working their asses off at being Brave Thrivers. Everyone living with MBC knows how this will end.  There is no cure.  There is no winning.

These friends deeply inspire me. I draw so much strength from them. More than they realize.  Their ability to push through, inspires me to push through. All of us fighting to keep a toehold while reaching to pull someone up along with us. Keep moving forward.  This MBC community has become my extended family.

I can’t and I can.

I Am A Mess

OCTOBER 19, 2020

I wasn’t cut out for this and I am a mess

Every time I feel like I grab my center
I get re-centered
Every time I am centered
something knocks me right on my ass

I feel very scared
I did not get the best results on my pet-scan
My next steps are not very promising

And the MRI machine tried to swallow me today.  It’s the fucking clothes.  I tried to explain that I don’t do hospital wear.  They do not care.  So they give me gowns, with hundreds of strings, tie this across that and then put this one on backwards; you don’t have to do the snaps and then “sorry Mrs Henderson, we only have XL pants, but just tie the string, and make sure you don’t have any clothes underneath, or any metal and leave it all in the room, and here’s a giant ruler with a key fob that might be wet from my personalized sanitizing efforts, but hey, lock up all your stuff.”  He went on, “my name is Francis, I will escort you to the MRI room, can I see your wrist band?”  I’m wondering if he notices that my name is Flori Hendron and not Florence Henderson.

I wasn’t cut out for this and I am a mess

I somehow got tricked into thinking that may be my treatment was actually working, and that I would somehow be able to stick it out and stay alive for a while. Even as I say these words I am crying because the side effucks still haven’t resolved and it’s been four weeks since my last treatment. Especially my stomachaches. Weird upper stomach thing. Shortness of breath. And shortness of patience

I have advanced breast cancer. I have some kind of involvement in my central nervous system. My lungs are not too happy. Hard to say for certain what’s going on in my lungs. Inflammation from some kind of a bacterium? Or Inflammation from cancer? Or inflammation from months of dangerous air quality?

I want to finish my art. I want to get my website finished. I want to get my book finished. I want to live to see my grandniece or nephew. And maybe even my own grandchild.

Covid has made my life 1 million times worse. Maybe 1 billion times worse.  And living on my street has become utter hell. This is the second time in less than a week that there’s a big protest on the corner and so my street is wall to wall cars and filled w people honking, people yelling, and all of it is very unnerving. I feel scared. I wish I had two huge German Shepherds in my front yard. Then I would feel safe.

I am exhausted all the time. I’m scared to be dead, but I wish I was dead. Don’t go. The old me stood in the mirror, looking back. I had to look away from her.  I could see the disappointment in her eyes.  Don’t go, she silently pleaded.  I felt hinged between the worlds, the peace of being dead, but the sorrow for all I leave behind.

I am a mess.

I Didn’t Mean to Get Cancer on the Weekend

SEPTEMBER 26, 2020

If you believe in Murphy, then you know Murphy’s Law rules. It just never fails. A weird symptom, a fever, not feeling well or a UTI always show up after normal business hours. “If this is an emergency please hang up and dial 911. Otherwise, please press one and a doctor will be paged.”

3-day weekends used to be a source of pleasure, anticipation and delight. Three days off in a row! An extra day to just relax. Or maybe 72 hours for a quick getaway.

Now 3-day weekends fill me with anxiety. Which of my doctors might be going out of town? Who might I call in an emergency? Can I go three whole days without needing medicine or medical guidance?  3-day weekend? No thank you. I’ll take extra weekdays along with more business hours; then maybe I can relax. 

I never let symptoms or side effects build up. I don’t like to wait till it’s three in the morning, two in the morning or Saturday morning. Like today. Today, The Weekend, I wake up not feeling okay. UTI relapse? It sure feels like that. Ugh. I’ve only been off antibiotics for 24 hours. Do I resume for a few more days or do I need to switch?

 I wait another hour for 9 AM, not wanting to bother anyone too early.  I spend time reading online, pacing around my house, trying to think what I should do.  What I need is medical advice; it’s not a life-threatening situation but a definite urgent situation. And I don’t want things to get systemic, into my kidneys. I’m still recovering from a rough chemo cycle and am worried about my counts. And while I may not have had a lot of (UTI) colonies, the settlers I did have wreaked havoc and I felt cruddy.

Finally at 9:00AM I make peace with the fact that I’m going to text my nurse practitioner.  I make peace with the fact that I hate to bother her but I’m going to bother her. I am so fortunate and grateful for her guidance and support. She’s been helping me for over 10 years.

We go back and forth with an information exchange.  And decide to resume the antibiotics that I just stopped, hoping a few more days will kill the remaining colonists.  Or at least discourage them from staying.  I’m back pushing fluids, trying to flush my system.  It’s exhausting.

I hate Murphy and his law. And I hate having a disease that doesn’t care about business hours.  And while I am playing whack-a-mole with smacking down metastatic breast cancer, I can’t afford to lose time to a UTI.  Hoping Murphey and his law leave me alone until Monday! For now it’s me against those settlers.

Murder by Cancer

MARCH 31, 2020

When someone from the Metastatic breast cancer community dies, we don’t say they lost their battle.  We don’t say they passed away.  We say another beautiful soul was murdered by Metastatic Breast Cancer. We use the term MURDER; it is the only word strong enough to express our outrage.  Technically, murder is not the right word.  But emotionally it is exactly the right word.

Metastatic Breast Cancer stalks us like a skilled assassin.  We never know when it will strike but we feel its constant presence.  And we do fight back, with super-human power.  Enduring harsh infusions, pills, and chemicals. Amputations. Radiation. Treatments.

We know from the beginning that we are fighting a losing battle.  We accept that, and we fight not against cancer, but we fight instead for our quality of life.  And for time.  We mostly fight for time.

Time to spend with our beloved family and friends. Time for advocacy; to make things better, easier, accountable, available, equitable, safer, and transparent for those walking behind us. 

We stand tall.  We lead with a big flag.  Or a bus.  A Facebook community.  We light buildings.  We show up at conferences.  We lead with poetry. With art.  With words.  We lead with truth.  Agency.  Accountability.  Community.  We lay down to be counted.  We stand up to be heard.  One voice.  MBC.

And when one of us dies, we say MURDERED!  Our condolences end with Rest in Power. 

And we mourn together; online-- socially distanced but emotionally connected.  We share photos, stories and grieve together.  Gone but not forgotten, memories will serve as blessings, and tears to ease pain and give relief.  Clichés are suddenly gold.  We remind each other to breathe.  When we return to our own front line, we push back with more resolve.  Reminded of our assassin.  Try to get further away.  Too many murdered. 

Yes, Rest in Power. 

In memory of the 116 people who die of MBC, every day.

Crossing the Threshold

NOVEMBER 9, 2020

I could hear them calling me from the other side. I bent down and looked and I could see them way up ahead. They were waving me on. Come on, come on!

It was darkness like a dream. But the sun was shining. And the moon was bright. Throwing shadows from the trees. Vines hanging all around me. I could hear my pounding heart. I was walking forward but turning in all directions, I didn’t feel safe. It was like a dream but it wasn’t a dream. I was wide-asleep.

They were calling me. Using my name. My Hebrew name, how did they know? I was shaking from adrenaline. I didn’t know where to hide. The room was so cold. I wish I had taken more Ativan. My heart was in my throat. How can this be happening again?

OK this will just feel just like a facial the technician joked. Joked! The nerve of him making a shitty joke jolted me out of my fantasy.  I wanted to stand up and strangle him. But instead all my suppressed anger came pouring out of my eyes.

He placed a jumbo sheet of hot wet woven plastic over my face. It’s too hot I said, but he said just relax and they started washing me with cool water. Rolling down my neck. Into my ears. Mixing with my wet anger.

Hold still Flori, hold still everyone said. I was strapped to the table, what choice did I have? SHIT why didn’t I take more Ativan for this face smothering? The warm plastic was starting to harden, it was fitted so tight, it felt like a wet helmet with a hole for my face. But my jaw was locked in and swallowing was not an option.

I began walking then running. I could hear the loud laughter, sounds of a huge party up ahead. C’mon c’mon they called to me! I don’t wanna be here I screamed.  I want to leave this cancer shit behind. WAIT FOR ME!

What do you mean I have mets in my brain? I feel fine. How big are they, where are they, what will they affect?  There are films up on all the monitors. Is that my skull?

They said don’t worry. FUCK. Don’t worry we can target them. We have the TRUE BEAM. Our state-of-the-art radiation machine. We can sculpt the beam, control it and target the tumors. Within one millimeter. All in one session, less than an hour. You won’t feel anything.  Don’t worry - you won’t feel anything.

WHAT THE ACTUAL FUCK?

Don’t worry, you won’t feel anything? I have never not felt anything. I already feel everything. And I am angry and I am terrified. I see my daughter out of the corner of my wet eye.  I try to pull it together and stop acting like such a baby.  She deserves better I think, but I am too flipped out to rein it in, too angry. Too petrified.  

Why is this happening to me again?  I’ve got to get out of here and off this table and out of this helmet. I am panicking. FUCK!

My thoughts are interrupted by noise from the party people, again I see them through the jagged portal in my head.  I see my grandmother, the one from Florida, she is tan and smiling and dancing and waving me in.  I don’t know if I should cross that threshold. 

The True Beam radiation set up begins. They move me to a cold metal table. There’s a flying arm swooping around me. Fuck!  Everything in the goddamn room makes a whirring noise. They place the torso mold under me so that my position cannot change. They place the smother mask helmet over my face and they bolt me to the fucking table. CLICK. Lock jaw, and I’m freezing.

I lose peripheral vision from the helmet, and as the table turns I feel waves of motion sickness. I asked the technician to stand where I can see them so when the table turns I can orient and not feel sick. The room is dark and the cross beams cut across my face and head. OK Flori-we will be right outside, we’re going to get started. What a bunch of chicken shit pussies.  WHY ARE THEY LEAVING ME ALONE IN THIS MORG? Who thought this was do-able with just one Ativan?

Once again, my fear and anger pour out of my eyes, into my ears, down my neck, onto the table, soaking the mold, but they are right. I cannot move. I am sandwiched and bolted to the space-age machine.  How did I wind up here? After 13 years of doing all the treatments only to have 4 little fuckers pop up in my head.  I’ve heard that to look back is to lose the soul.  Regret. It will fuck you up every time.  Time moves forward.  Until I cross the threshold, I have no choice but to keep moving forward.

Eclipsed by Cancer

NOVEMBER 7, 2020

For nearly a decade I kept my metastatic breast cancer status eclipsed from all but my inner circle.  I was lucky, after the first year I was diagnosed and rolling different chemotherapies, I switched oncologists. And then I was lucky, my cancer responded to all targeted therapies. Which gave me very low to no side effects.

I had just gone through a terrible divorce. My ex who was an exemplary husband and father snapped in half. Doubt that I’ll ever really know what happened, and I no longer care to know what happened.

But from the moment it happened, and he walked out of not just my life but our home and walked away from his kids, I knew things would never be quite the same. We were all knocked far out of our orbit.

One of the last things he said to me when I caught him cheating and living a secret life, was that he could no longer do this dog and pony show.

It was shocking to me, we all looked up to him so much. I think for many years the vision he saw of himself was a vision reflected from the light and love of my eyes and the eyes of our kids.  But even the most powerful sun cannot keep away one’s own personal darkness. And ultimately his feelings of being a worthless piece of shit prevailed. And now I agree with him. Turns out he is a worthless piece of shit. I’d add traitor and liar And sex addict and embezzler to the list as well.  Yes, broken and damaged. His repetition compulsion got the best of him.

He threw our world out of orbit and in many ways, I entered a darkness like none I’ve ever known.  I know any repair he’s done, has made him into a completely different person than he was when we were a family.  

Between his desperate marriage to the lying sex addict whore and his complete lack of contributing financially to raising our kids, educating them, and there’s the fact that my son was so damaged that he also broke for a short time, and my daughter still has zero contact with him, I’d say my kids were hurt the most as is often typical in a divorce.

They don’t get to date a new daddy. They are stuck with the shards of that break up. And they weren’t even little kids. They were 14 and 16. But that is literally another story.

My story of living in that darkness continued into the first summer. I managed to send both of my kids to their normal summer camp program, sleep away camp for both different sleep away camps for both Which left me alone, in deafening darkness surrounded by a house of lies. I was hurting worse than I had ever hurt before and in a different and profound way. A man I thought was my family was not my family. He was not only not trustworthy he was dangerous.

The more I paced through my house of darkness, the more I felt thrown out of my orbit, overshadowed by grief and fear. But still surrounded by 1500 ft.² of tchotchkes. 

Sadly I couldn’t take looking at all of the collectibles that represented an 18 year marriage. Pacing around I started throwing and breaking stuff into my trash. It was the most satisfying feeling in the most satisfying noise combined. I mean I was so broken, our marriage was so broken that it seemed pointless to leave all of these tchotchkes intact. I never wanted to see them again. Who would want them? Him? I couldn’t imagine ever laying eyes on these items that were bought in a time of love, under false pretense, to mark different occasions. The sparkling glasses of birthdays. Beautiful hand-blown vases. A lot of cool art pieces. Things that a couple collects because they are building a life of memories together.

Well, despite his degree in architecture, the foundation he was laying was shaky at best. Passive-aggressive charade of a man who felt worthless at his core. After I finished breaking all the things that represented “us “. I felt a little better. By the following weekend I was back in darkness. And fear. Who would ever love me again. If a man I loved so much, and gave him such beautiful children, and a beautiful home, could treat me like gods garbage, could lie to my face, could tell me he was depressed and wanted to go to therapy and then when I went with him to therapy he just lied week after week wasting so much time and wasting so much money. Who would ever want me if my own husband didn’t want me?

I stopped eating and spent a few days mostly laying in my closet floor in total darkness. A total eclipse of light and love. On Sunday I decided I would shower and go to whole foods and put food in the house. And then I would figure out ways to end my pain. My kids would still be away another week so I had some time.

 At Whole Foods a very handsome man came up to me and asked if I remembered him. He used my maiden name from my school days. I did not recognize him but when he said his name I did remember him from junior high school. He immediately blurted out that he had the biggest crush on me. 

Here we were standing face-to-face at whole foods and I had no makeup on and I looked like shit. And he was telling me that he was going through a divorce and I said to him so am I. Then he asked if I’d like to get together and I said yes I would.  I could see his jet-black eyes were filled with sparkling stars, and the dancing sparkles in his eyes were starting to reflect some light towards me.

So, when I got home I decided I wouldn’t kill myself. I would maybe go to dinner with this handsome man with eye sparkles. Plus, I really wanted another chance for him to see me with some makeup on my hair done and a decent outfit. My vanity prevailed.

I dated this man for six years, I credit him for saving my life. For reminding me what being a woman is about. For reminding me that sexuality has nothing to do with body parts. And for teaching me that short guys can have some of the most beautiful bodies on the face of the earth. He cheered me on when I was first diagnosed stage 4 terminal cancer, back in 2007.

The timing between us wasn’t great, my kids were going off to college, but his kids were just in grammar school. He was star soccer dad, I already put in my hours on the soccer field.

The beautiful energy between us started to change towards resentment. To be honest, the biggest problem was that he was a financially unstable. It didn’t leave us anywhere to go in a serious way. I could not afford to support another partner financially. He was trapped in his divorce settlement and in his own insurmountable feelings of guilt. He really had nowhere to go with his emotions and our relationship started to disintegrate.

We split up and soon after I met another man who took my breath away.  Here was a second man who didn’t care about my cut and pasted body whatsoever. When I say he didn’t care, I was beautiful to him. So, it reinforced sexuality again for me. And allowed me to be fully seen in the light. With self-confidence. I did however continue to underplay having metastatic breast cancer. It had been under control, I went in every three weeks for an infusion, into cancer-land, and then walked out again and pushed it out of my mind.

This compartmentalization of having breast cancer really allowed me to be the best and brightest me I could be. The second relationship didn’t last very long, but I have no regrets. It was a thrilling three year of love and laughter. Fun times of travel and having incredible experiences like watching the Mars rover launch and going to Obama‘s second inauguration party and living a very exciting life.

I wasn’t wise in choosing him, I literally fell head over heels. But at 58, he had been engaged and then dis-engaged from at least four serious commitments to women in his life.  He was a public figure who was loved by almost all, but never able to find “the one” to love enough to commit. By his own admission he came the closest with me - by then it didn’t really matter.  He was too terrified and too unstable.  Our relationship ended abruptly and for me it triggered tremendous grief and the pain of un-loving someone.

I concentrated on me for a change. Got my certification in social emotional arts. Learned how it felt to be a single woman with no kids living at home and now undergoing metastatic breast cancer treatment on my own. Or sometimes with friends. Or most often my beautiful daughter. I learned how to dance, I became part of the dance community and it saved me. That was in 2013. I walked my daughter down the aisle, just she and I alone. It was one of the most beautiful moments of my life. I saw so many milestones I never ever expected to live to see.

I begin my own exploration into art expression, into some writing, and still heavily into social dancing.

In 2017 I invited 75 of my best friends and family to my home. To celebrate my 60th birthday, and to celebrate a decade living with metastatic breast cancer. On treatment every three weeks. It was like a coming out party, so many people had no idea. It was also a night for me to show my art and to sell it, and I donated proceeds to benefit metaViver.org

I was no longer living in the shadow, instead I was finally living out in the full sun. Proudly.

Surrounded by the people I love the most, my family and my friends. And I was loving them the best way I know how; by bringing them all together, and by sharing food, drinks, art and life!