“I get by with a little help from my friends…”
A few months ago I wrote a blog called Radioactive Reb.
This was about the incredibly stressful experience that advanced cancer patients have of undergoing PET scans to see if their cancer has grown, spread, shrunk, or changed in any significant way. That PET scan ended up being inconclusive, and it was decided that another one would be done in eight weeks. Fast forward eight weeks and starting a week ago, I began sweating out that call from my oncologist with the findings.
The waiting is brutal. So many things go through your mind. At certain moments, I become convinced that every single pain in my body is certain metastasis. In fact, I start to believe I can feel the tumors growing as I sit here. Cray Cray. Other times, I know – I just know, that things will be stable. They have to be, right? Of course. I need more time.
Then I think about my friends Beth Calabotta, Champagne Joy, and Samantha Stohr – they all needed more time. They all needed clean, stable PET scans. They didn’t get them. I know that no matter how badly I want more time, I have no more guarantee than they did that I’ll get it. And of course the reality is that even if this one is stable, the next one very well may not be.
This is a challenging way to live. The life of a cancer patient is plagued by constant uncertainty and a very raw awareness of one’s mortality. We have lost the luxury of ignorance afforded by existential denial. So, as I found myself becoming an anxious ball of nerves and feeling like my life was on “hold” until I got my results, I realized that this is not a comfortable or productive way to exist. I needed to find a better strategy to live well in between and during these scans, procedures, results, etc. for the rest of my life. Am I going to let the outcome of each visit or test dictate my mood and actions? Or am I going to decide how I want to live and feel and stick to it no matter what is said on the other end of “that call,” and the call after that, and the call after that.
Of course – I could allow myself to be miserable. I could be a nervous, whiny, miserable wretch of a person (and believe me sometimes I am). We all have things in our life that could justify being that way. Insert divorce, financial stress, grief, disability instead of cancer … we all have something. But…that is no way to live, waiting for something to happen or to pass until you start living your best life. This makes no sense, especially when you are acutely aware of how limited your time to “live your best life” may be. I don’t want to live like that. I want to choose joy. I don’t mean Christmas morning jumping up and down joy or “I just won the lottery” joy. I want to find and maintain a sense of joy that is peaceful, internal, and enduring, not caused – or altered – by external events. I believe this is the challenge that my current life situation is offering to me.
So…here is how I am finding joy in the midst of the unavoidable external stress of going through scans, blood work and biopsies that will have life and death results:
- I had one of my lifelong best friends come meet me at the PET scan this time. I usually go alone and realized there really is no reason to. Even though she didn’t need to really “do” anything, just having someone there that loves me and whom I’ve known (since I was 6!) was so comforting. It reminded me of so many good things in my life and all the love and support I have from her and so many others. Also, it gave her a glimpse into what my life is like as a cancer patient and helped her feel more involved in this situation that makes so many loved ones feel helpless. All I had to do was let her in. I found Joy in opening my heart.
- Instead of constantly working on the foundation like I normally do in some way shape or form, I decided to bring headphones to that appointment and treat myself to watching a few hysterical episodes of one of my favorite shows, GIRLS, while I got the IV, drank the glucose, and waited the hour for my body to be ready for the scan. I felt joy not only in the fleeting emotions that come from laughing and getting caught up in the drama, but lasting joy that I was able to comfort myself and give myself permission to experience that. I found Joy in nurturing myself.
- The next day – again, I made time to do little things that are meaningful to me. I sent a friend, who is across the country, a package that I thought she and her family might enjoy. I found Joy in caring for others.
- Learning from last week’s PET scan, I invited my childhood friends to join me at my appointments again this week and we decided to make a two day event of it in NYC:
Here we are arriving at Memorial Sloan Kettering Cancer Center – first stop Blood Draw! These guys spoiled me rotten – carrying my bags, calling Ubers, holding doors, and they really showed their love for me when they refrained from making crude jokes and heckling my oncologist during my physical exam (as they had threatened to do) while they sat two feet away silently cracking up and making faces like 12 year olds at the hilarity of me getting an unclothed exam with 6 people in the room watching, and while I chatted away about all my gross surgeries and gave the wide-eyed, unsuspecting young med student far more of an education than she was looking for, EVER. Thank you ladies 🙂 I found Joy in feeling loved.
After a stressful, emotional day in our hotel getting lab results and on and off calls with my doctor, we decided we needed a pure comedy night. We needed to laugh. This is what I love about NYC – that on a random Monday night – you can do just that. We went around the corner from our hotel to a live comedy show, then…still in need of some more chuckles, we went a few blocks north to see a hysterical movie. I found Joy in finding humor.
The next morning, we took up residence on a few comfy lounge chairs by the pool and stayed there from coffee to cocktails.
We were waiting for more news and it was an opportunity to practice feeling at peace and joyful no matter what I was dealing with or waiting for. To practice feeling joy in the midst of so much stress is challenging. Of course it did not hurt that we were lucky enough to be in this incredible oasis that made you feel like you were in South Beach Miami – in the middle of Manhattan.
However, despite the gorgeous setting – I found myself sinking back into that black hole of fear and despair about my situation. It was a good reminder that it does not matter where or who you are. You can feel despair even in a place that looks and feels like paradise if your mind is not at peace. I had to continually challenge myself to focus out of it and maintain peace and joy in my mind. To do this, I needed to detach a little bit. I don’t mean that I stopped caring about living or the people I love, I just stopped holding onto everything so tightly and tried to just accept what was happening in the moment. It is extremely hard to feel anxious if you are completely focused on the present moment – unless of course a hungry bear is standing in front of you -but luckily that was not the case. But to detach from worrying about the future, or regretting or holding onto the past is to free fall into the present. That is where I found my peace and as a result, joy. I found Joy in staying in the moment, taking one breath and one moment at a time.
Again, we took calls back and forth from my doctor and it was a stressful day, but being in this setting, continually coming back to staying in the moment, and having the support and humor of friends, family, and my medical team just made me feel wrapped in love. I am not alone. I found Joy in feeling connection.
I am home now and those feelings of quiet joy have endured. It takes practice – just like working out a muscle. Coming back to the moment – detaching a little from the past and future – and letting go of what you can’t control, remembering your connection to the 7 billion other people on the planet, your humor, your love, free falling into the present – and knowing you are exactly where you are meant to be at this moment in time – this all allows me to find peace and joy in my mind. Despite the fact that there are many unknowns and having cancer is beyond unsettling, I am figuring out my new normal and not waiting for something good or bad to happen or pass to get there. I choose to feel at peace right now, no matter what, because the only thing any of us can be sure of is this moment we’ve been given, right now. Don’t waste it.