Cancerversary #3, 2017-2020

Three (3) years ago today, when I was diagnosed with breast cancer, my doctor told me that two (2) to three (3) years was the median life expectancy I could expect. He did tell me that people with bone only metastasis could potentially look at a life expectancy of up to ten (10) years but that only unicorns/outliers made it that long. It was an incredibly difficult day for me and my family.

And now I’ve lived those three years since my diagnosis with MBC.

I’m at the end of the median life expectancy and it’s a weirdly uncomfortable feeling. On the one hand, I’m incredibly grateful for the time I’ve had and will have with my husband, my children, my family, my dear friends, and the amazing men and women I’ve met during the last three years. On the other hand, coming to the end of what I was told to expect is oddly terrifying and exhilarating all at once.

After three years, you’d think that I would have this cancer having thing figured out. I really don’t.

You’d also think I’d be super excited to have reached this milestone. Yet, I’m entirely ambivalent about it.

Yes, I’m incredibly blessed to have been able to reach this milestone and to be feeling as well as I am. No one is more aware of how amazing it is to have been able to live this long with a terminal illness, than I. And yet, I think survivors guilt comes into play with all the amazing men and women who are dying every day — approximately 116 men and women every single day in the United States. The more I get involved with the metastatic community, the more friends I’ve been connected with have died.

I have chosen to lean in, to connect with other cancer havers, to attend conferences, to learn, to advocate, and to immerse myself in this new world I’m living in. This has been my choice and all of these things have helped me to deal with my own diagnosis. I’m glad to have learned all I have learned; I’m far richer for connecting with all the amazing men and women over the past three years. Yes, cancer is a gigantic part of my life and it’s working for me as I deal with living with the specter of death looming over me.

And yet, the price of that immersion is loss. Losses that could be prevented. Losses that wouldn’t have happened if research into metastatic breast cancer was prioritized. Losses that shatter my heart over and over.

I read a statement when I was newly a mom that said something along the lines of: Having a child means having to live with part of your heart walking around outside your body. While getting close to another terminal patient is very different from the relationship between mother and child, this idea holds true for me. Getting close to other terminal patients does mean that parts of my heart are walking around outside my body with some precious human beings; human beings whose lives have been and will be cut drastically short.

At the end of three (3) years, I haven’t had any epiphanies; yes, my life is different and arguably better because of the choices we’ve made to avoid stress and unhealthy things, but I’m not of the opinion that cancer itself has made my life better. Cancer has irrevocably changed my life and dealing with those changes has affected every part of my life and the lives of everyone who is around me. Have those changes been for the better? Overall, I think most of the changes have been for the better, but due to the response we’ve had to my diagnosis, not because of cancer.

I have a 25%ish chance to live two more years. That’s my next goal line. And I’m going to be advocating and learning and living my best life every day until I get there.

My 2nd Metaversary

March 8, 2017, I received my breast cancer diagnosis and on June 21, 2017, I was told that I had actually been Stage IV from the beginning (aka de novo). I’ve marked the former as my cancerversary for the last two years and yet the latter needs some sort of acknowledgement. It was the latter diagnosis that has literally upended my life while we were still struggling to assimilate the idea of cancer.

That day, a Thursday and the day before my second AC infusion, is irrevocably seared into my memory. The call, early in the day, that I needed to come in, didn’t matter the time, just come. I was in the middle of prepping for a hearing and couldn’t just drop that, so I prepped, went to the hearing and then went to my doctor’s office. Elliot insisted on coming with me, he intuitively knew it was bad. I was in denial and initially told him not to come, that he’d already missed too much work due to my medical appointments and surgeries.

When my first medical oncologist (he retired in late 2017) gave me the news that’s I’d actually been Stage IV for a while, it was paralyzing. My ability to think just stopped and all I could visualize was my kids. I’m sure my doctor gave us some details, but the only detail I remember from the conversation was when he mentioned 10 years as a potential life span. I seized on that comment and asked some clarifying questions. My doctor immediately stopped me and said that 10 years was considered an outlier and that the life expectancy was closer to 2. He talked up the progress made with chemotherapeutic drugs in recent years and was kind and gentle. The very features that I didn’t like in him initially, because it felt paternalistic then, were the very things that I appreciated the most at the time of him delivering such devastating news.

So here I am, I’ve been knowingly living with Stage IV metastatic breast cancer for over 2 years. I’m sure the actual time I’ve had cancer has been longer than 2 years because back on June 21, 2017, I learned that the cancer lesions were in literally every bone. It took some time for that to happen and I’d been feeling pain for several months in the area where a 5 cm tumor had put down roots.

There are things I know now that sometimes I wish I knew then, but in reality the last two years have served as a way to assimilate and understand my diagnosis. I couldn’t have done that more quickly I don’t think. It has literally taken this time to adjust to this new life, these new parameters, the new end point and my new goals.

Cancer has changed everything and has taken a great deal away, yet there is still magic, there are still memories to be made and I’m alive today.

That I’m alive today is something I’m learning to EMBRACE. Today I get to be here with my boys and that’s the most important thing right now.

Mother’s Day 2019

May, 2019 is the third Mother’s Day I will celebrate with cancer. It’s only the second Mother’s Day I will celebrate since knowing that I was de novo metastatic (meaning from the beginning) since it took a few months to figure that out after the initial bombshell in March, 2017.

Every holiday since cancer, especially metastatic breast cancer, takes on a new significance. Every time, I can’t help but wonder whether this is the last of whatever holiday it is that I will celebrate. Every time, I go a little more overboard in celebrating just in case it really is the last time. Every time, I have to consciously look away from the storm clouds gathering overhead, especially when a scan or other treatment is coming up.

As a daughter, I hope the celebrations and gifts for my mom have gotten better over the years. My mom is pretty forgiving and accepting of our efforts over the years, even the misguided ones. It makes my heart smile a little seeing how she has kept a variety of the trinkets and projects I made over the years for her. One of our most memorable mother’s days, for me, was driving together (just my mom and me) from Virginia to Florida after I graduated from law school. Being one of six means that we all rarely got our mother’s undivided attention. Her attention was and is priceless and coveted. Being the eldest means I still have 18 months of her undivided attention more than any of my siblings.

A few mother’s days stick out for me since becoming a mother myself. My first Mother’s Day as a new mom in 2013 when j finally got to celebrate as a mom. My first as a mother of two when we came home from the hospital on Mother’s Day in 2015 and I tandem nursed my boys for the first time, marveling at how HUGE my 2 year old eldest looked compared to his newborn brother. The very first gift I received on Mother’s Day that my son made for me at school, which I display proudly on my piano to this day. Since Mother’s Day happens during the school year, there are usually celebrations and trinkets and fun activities with the kiddos.

Each of these celebrations were and are a salve to the wound of watching other women celebrate Mother’s Day when I ached to hold a child in my arms. Each of these celebrations remind me how lucky I am to have an amazing role model in my own mom.

The older I get, the closer I get to the end of my life, the more I treasure time. Time to be with those that I love. Time to celebrate milestones and time to impart important lessons I’ve learned.

This Mother’s Day and every day, I am reminded to be grateful for the mothering I’ve received, grateful to be gifted the opportunity to be a mother to my boys and the awe-Inspiring responsibility it is to be a mother. I’m also reminded of those mother’s days when I longed to be a mom and my heart hurts for those families that feel incomplete.

Today, and every day, thank those people in your life who show love, who nurture without thoughts of reciprocation and who make life and love beautiful. Those people don’t have to be moms, dads are pretty good at nurturing too, as are Aunts and Grandmas and people who give freely of themselves. After all, Mother’s Day is just a made up holiday anyway. 😉

Cancerversary #2

On March 8, 2017, I heard those fateful words “You have breast cancer.”  It has now been two whole years since that day and everything is so very different now.

But how to talk about that?

Am I a happier person?  Nope

Am I angry? Yep

Am I depressed/anxious?  Yep

Do I think about death more often? Yep

Do I tolerate BS?  Nope, but then I never really did before.  I AM more vocal about things I perceive as wrong.

What I am is more centered, less stressed, and more present.  I don’t see breast cancer, specifically a terminal diagnosis, as a gift or a blessing or something good, but I do see the “magic” (as my friend Emily Garnett says) in what has come out of the experience.  I’ve met some pretty amazing people that I likely would never have met.

Yet, I am also presented much more often with the death of those friends.  Many of the women who have touched my life, I’ve never met in real life.  It’s an odd shift, to be invested in relationships that occur primarily virtually.  Yet, the grief when we lose one of those women is real and it is intense. The raw, deep and intense rage I feel at organizations that take money and yet don’t truly fund the cure we desperately need has been growing over time.

I helped to organize several Secret Santa exchanges over the holidays for groups that I’m involved with.  I love Christmas and I love exchanging gifts.  When I got messages from family members that one of the participants in the gift exchanged had died and that person who was actively dying had been concerned about her Secret Santa recipient not receiving a gift, my heart broke a little more.

In one of the support groups I’m in, I participated in (and recruited my whole family) to participate in making Christmas magic for little kiddos who had lost their mom this year.  I talked to my kids about this, how important it is to care about other little boys and girls who don’t have a mommy or maybe a daddy to help them celebrate or buy gifts as my heart broke for them celebrating Christmas without me.

Sometimes I think staying away from death and illness and progressions and cancer might be good for me.  At the same time, I keep coming back to these women and these groups because the people are, on the whole, authentic.

Authentic in their pain and genuine in their celebrations.

I read a “parenting book” recently that suggested that we should not wish for our children to be happy but to wish for our children to be authentic.  Authenticity is truly rare nowadays.

So, on this 2nd cancerversary, I will celebrate authenticity and genuineness and I will be vulnerable and put my heart “out there” because there is joy and love and beauty in seeing others, in experiencing life with like-minded people.   I’ve met some amazing people and I celebrate those friendships and the magic we are creating together.

I like to say that while I treasure the friendships that have survived my transition from “normal” to terminal illness, that it took cancer to find my people.  I’ve found a group of people, that include some before cancer friends and lots of after cancer friends that lift me up and answer my middle of the night texts and are raw and honest and live life each day like we’re dying, because we are.  That’s something to celebrate.