the whipped cream conundrum

I recently watched American Symphony on Netflix. As acclaimed musician Jon Batiste composes a symphony, his wife, author Suleika Jaouad, undergoes a bone marrow transplant. While the primary focus of the movie is Batiste’s musical journey, the filmmakers also offer a glimpse into Jaouad’s treatment. While I could identify with her experience, it was the way both Jaouad and Batiste lived two truths at the same time — he was at the pinnacle of success yet she was facing a life threatening illness — that got me thinking. What does it mean to live with two conflicting truths at the same time and which ones am I holding onto?

I hold these truths … I live with uncertainty and acceptance.  In the spring of 2016, as my doctors slowly exited the exam room after informing me I had no more options, living with uncertainty in 2023, almost 2024, is actually a pretty damn good place to be. So on the one hand, I struggle daily with the feeling that some day the other shoe may drop, that this miraculous treatment which melted my tumors away may no longer do its thing, and that the good cells will stop fighting the bad cells. And it’s true, even doctors don’t know the long term prognosis for people who respond positively to immunotherapy. However, at the same time, I look back seven, nearly eight years ago, when all hope was gone, and have accepted that if uncertainty is what is keeping me alive, I will take it.

I hold these truths … I experience joy and grief. 

I watched as my father took his last breath. He inhaled deeply and, in my mind, exhaled into another world. I felt many emotions all at once including heartbreak and love and loneliness and peace. My grief, although not always outwardly expressed, is ever present. In the midst of my grief, I experienced joy. I recall a time where I danced for hours as if no one was watching. I was going through an emotional time, but I was able to let that go to feel free and joyful. I remember someone once asking, “How can you laugh at a funeral?” To me, that is what it means to hold joy and grief at the same time. At my funeral, I hope you not only laugh, but you dance, too.

I hold these truths … I am a badass and I battle my self-confidence. It’s usually others who tell me that I am a badass, but this time it’s me. As we watched “American Symphony,” my mother pointed out to me just how much I have actually been through in the past 13 years. There are some scenes in the film that could have been taken from my own life — the transfer of the bone marrow, the conversations with the doctors, the isolation from the world — but they are ones that I have compartmentalized. However, these, and many more, were my lived experiences. And I conquered them all. So, I guess it’s ok to call myself a badass. At the same time, my other hand holds my lack of self-confidence. I don’t always feel as though I can take on the world in the same way I handled cancer. Indeed, there is a scene in the film where Batiste is fighting his demons of anxiety and not wanting to face the day despite all of his talent. I have a lot to learn from holding these two truths together.

These, among others, are the truths of my life, and, I powerfully hold them in each hand at the same time. Sometimes one truth is stronger than the other, sometimes a truth rears its ugly head at the wrong time, and sometimes many truths converge to make a big hot mess of my life. 

It’s after 11 o’clock at night. On a Wednesday. Of a very busy week. I should be resting. I should be drifting off to sleep preparing myself for the adventures and demands that tomorrow will surely bring. Instead, I am here — a place I haven’t been in a while, and a place I have missed.

Before I lay my head on my pillow with Sadie snuggled by my side, I feel compelled to write about an important, yet complicated, question that was asked of me today — what are your hopes and dreams? Initially, I was at a loss for words. I took a pass on answering. Several minutes later, after revisiting the question, I was overcome with emotion. I don’t think I have given any thought to my hopes and dreams in a long time.

I am not sure if I have any hopes and dreams right now. I say that as a person who worries from moment to moment whether I will wake up a healthy person or a sick person. I say that as a person who has lost many hopes and dreams but has yet to grieve those losses. I say that as a person who needs to give herself permission to hope and dream despite the cards she’s been dealt.

13 years ago, before I was diagnosed with Hodgkins lymphoma, I was filled with hopes and dreams. Some of them materialized — I have found meaningful work; I am part of a close-knit community; and I am having an impact on the world as an educator. Others did not materialize by my own choice, like becoming a successful lawyer (If you’ve seen Suits, you may know why!). During the years that followed the first diagnosis, my hopes and dreams began to diminish. Cancer began to steal time and opportunities from me.

The first big loss hit me as I was going in for my stem cell transplant. I was literally about to be admitted to the hospital when I asked what the doctors were going to do to preserve my fertility. I always thought I wanted a family, or at least know I had the option. “Oh,” said the oncologist, “there’s nothing we can do. You’re going to go into early menopause.” And that was it. There was no discussion about options, and they sent me on my way. I was devastated and angry. My hope of ever having a child was taken from me, and I had no control. I used to hope for financial security, to own a home, to find a partner, to travel, but because of cancer, some of these may not be possible. For so many years, my life was consumed with doctors and hospitals and treatments that I missed out on a lot of the life milestones that people my age experinced.

I wish I could wrap this all up with a bow and tell you I’m ok, and, to some extent, I am. I am high functioning; I am happy; I am in remission. But, in some ways, I am not ok. I am grieving; I am angry; and I am frustrated. I will leave you with this, however, while I do not necessarily have a list of hopes and dreams at the moment, I am hopeful that they will come to me.