Grief: "The Box"

The work as a cancer advocate can be quite rewarding - but it has its challenges too. For the majority of my short time in this arena, I have been able to meet patients at the beginning of their journeys; just finding out their family history, encouraging them to undergo testing, a "mutation positive" result, preventive surgeries (my personal favorite!) or a newly diagnosed cancer. 

But recently it seems the reality of working with cancer is catching up to me. Not everyone survives. In the last year I have worked with several terminally ill women who have undergone genetic testing to give knowledge to their families, in hopes that maybe there was an answer for their cancer. I have found myself playing more of a supporting role through their final days - and also through the family's transition to a "new normal".

As I've spent time with these grieving families - I've taken some time to reflect on my own experience with grief.  I don't believe grief is some "cycle" that can be completed. Grief is not a tunnel that we walk through and other the other side we're just "over it", grief is ongoing.  

The question I've been getting a lot is "How?" How do you move on? How do you stop crying? How do you not think of them 100% of the time? How do you find happiness again?

“The Box”

Sometimes your mind puts painful memories into a “box” in the back of your mind. A compartment where memories can be filed and visited.

 The box is always there, but you learn to talk about a difficult experience without the raw memories in that box escaping. You see, when you first lose someone, the box hasn’t been built. The emotions and memories run wild. You may be having a great day and a thought, a song, or even a person may send you spiraling back into inconsolable heartache and sadness. 

Our “box” is our way of surviving, because I can tell you, there’s no way a person could go on to live without the box. You feel like a victim of your own life, you’re at the mercy of everyone and everything around you – but you’re not sure what to fear day to day. You long to go to the grocery store without crying, you hope the radio doesn’t play “your song”, yet you hope someone mentions their name just because it’s a comfort to know others think about them and miss them too. 

The box can be a scary place. You fear losing the memories. You want to keep every memory of them, even the hard ones, alive – because in some weird way, if the memories are alive, they’re not entirely “gone”. The only thing worse than remembering your loved one, is the fear of them being forgotten.

As months and years pass, you will notice that you are able to pinpoint what your triggers are, maybe a date/anniversary, a holiday, an item. You will be able to prepare your heart for the pain that day will bring. You will know who you can be around and who you want to avoid. You will find that your loved one’s favorite Mexican restaurant will not be a place to avoid on their birthday – but rather a destination to celebrate their life and memory. 

The things, people, and places that were once “triggers” are now “comforts”. I don’t know exactly when that crossover happens or that there’s a definitive point – but it happens. 

The box makes it possible.

The box cannot be neglected, the box needs to be visited and maintained. This is why grief is ongoing – grieving never ends. The memories in the box may be a blend of really graphic, hard, “negative” times. Perhaps the actual death of the person you loved – a struggle or battle they fought. In my mom’s case, it’s thinking about what chemo did to her mind and body, memories of holding her hand and remembering the texture of her skin and certain glows in her eyes. I knew she was dying. I forced myself to make mental note of the way she breathed, the way her voice sounded, what her handwriting looked like. Most, if not all of these mental notes, are housed in the box. 

The box may be home to really happy memories, too. Some of these memories may be the happiest times of your life. You may wonder how this memory ended up in the box – sometimes it’s because your happiest days were with that person. I think this is our heart’s way of letting us find peace. If we compared every vacation, every “jam session” in the car, every cozy night in -- to the ones we had with our loved one, we may never find the same, pure joy again. 

The box is something we need to fully embrace. The box not only allows us to survive, but to thrive. The box allows us to lay our head on the pillow without crying ourselves to sleep. The box allows us to make new memories with those we love, who are still here.  

No Body Part is Worth Dying For

This morning I read about another BRCA sister who lost her life. She knew she carried a BRCA mutation before she was diagnosed with cancer, but never opted for any preventive actions.  As I read comments from her family and friends, one stood out to me “No body part is worth dying for.”

No body part is worth dying for. Wow.

When I went in for my bilateral mastectomy at age 22, I had a 10 month old little boy, Peyton.

I had more than one health care professional remind me (in various ways: questions, comments, informed consent) that this surgery meant I would not be able to breast feed Peyton or any future children. This surgery meant the “equipment” we as women are given to sustain life, I would no longer have.

My friends and family had their way of reminding me too – “are you excited for your new boobs?” “How big are you going to go?” “Is it going to hurt?”

I would say these questions came as a combination of trying to make conversation, ease my anxiety, and general curiosity and/or misunderstanding about what a mastectomy is. I wasn’t offended – I just knew I needed to be open about my experience for them – and for myself too.

From my medical team, the constant reminders were their way of gauging if I knew what I was getting myself into; there are risks and there’s no undo button. They wanted to make sure I knew the finality of my decision.

I did. I accepted whatever the outcome would be, because no body part is worth dying for.

Now some people will say, you only have an “increased risk” – or my personal favorite “we’re all gonna die of something, someday.” One of these days the thought in my head will escape. “I’ll trade you the chemotherapy that’s almost certain in my future, for the peaceful death in your sleep – deal?”

Of course we’re all gonna die someday – but as my friend Denise says “If your airplane had an 87% chance of falling out of the sky, would you get on it?”

We’re all going to die, right. Riiiiiiiight.

If we can do something to prolong our life, maybe see the milestones of starting a career, getting married, having children, and seeing our children reach these milestones – why wouldn’t we do it?

No body part is worth dying for.

So no, cutting off my boobs was not “radical”. It was conservative – a way to preserve my life and health as I know them today.

And planning to remove my fallopian tubes, ovaries, and uterus at age 35 is “extreme” – extremely smart. As two-thirds of those diagnosed with ovarian cancer will die from the disease.

And monitoring those organs every six months until that surgery is not “over the top” – but I can tell you what is “over the top” – the way I’m going to live the life I have.

In 2017, we are going to give more people control of their health and their lives by empowering them with lifesaving genetic knowledge. It’s important to know this information – but to feel empowered and worthy enough to act.

Your life is worth it – No body part is worth dying for.