By Andi Straus
I woke up one morning in August, 2020, with a curious pain in my side. More discomfort than pain, really, a little like gas pain but different. I didn’t think much of it, except that off and on I felt this pain over the course of several weeks. Something just wasn’t right. I checked with Dr. Google – maybe it was IBS? Pancreatitis? Gluten sensitivity? I finally made an appointment with my primary doctor who ordered a CT scan. All of a sudden I found myself on a cancer journey, a member of a club I had no desire to be a member of, in an alternate universe to the one I’d always known and had thought would last forever.
“Look Both Ways” is what I’m calling my blog, and this is the first of what I hope will be several entries on my cancer journey, a journey similar, I’m sure, to many at our beloved Ann’s Place which has so generously and graciously offered to host blogs like mine so we can share our experiences. The meaning of “Look Both Ways” is that I’m living in liminal space (more on that later) where I have one foot squarely in the land of the living, and the other in the terminal illness territory which will result in my death. So I hold both of these in my vision, sometimes together, sometimes one at a time, and I plan to share here what that is like. I hope that my words will elicit comments and feedback from Ann’s Place readers so we can support one another, share our insights, and grow together.
I came to be part of the Ann’s Place community following my diagnosis in February 2021 (it actually took me three additional months to find Ann’s Place) when I learned I have a rare cancer called a liposarcoma, which is 1% of all cancers, and within that 1% there are more than 80 subtypes. I have a particularly aggressive subtype and have exhausted the few treatment options available: chemotherapy and surgery. I am now participating in a clinical study, and my condition is stable. There is no remission with my kind of cancer, and I’ve already had two recurrences, so my prognosis is poor.
I find myself asking so often: How did I get here? How did this happen? In the middle of this past summer I found myself moving into an assisted living (later independent living) facility in Westchester where I now live with people at least 15 years my senior and in most cases I am the age of their children. I am 71, recently retired, had lots of plans for my retirement including moving to Colorado to be near my daughter and granddaughters, finding a new home in a new community, decades of healthy living ahead of me. It all changed so quickly, and I found myself bewildered, fearful, unbelieving, grieving, all at once. In the hurry to move into the facility, I gave away my winter clothes, gave away most of my belongings, because I could foresee no future for myself. This was so not part of my retirement plan, so not what I wanted or expected. I wasn’t thinking “why me?” so much as how can this possibly be? I lived in a state of blissful denial. I mean, I knew I was getting older and there would be inevitable aches and pains, but THIS?
As I mentioned earlier, I now live in a space that is liminal. As defined by Merriam-Webster, this is “relating to, or being in an intermediate state, phase or condition: in between, transitional.” Eyes wide open. I look toward the future while not knowing if there will be one, and at the same time face my own death, which is at times unbearable, unimaginable, unthinkable, and so real.
A friend told me that some time ago liminal space was thought of as a place where people went to seclude themselves from society, and when they returned it was in an enlightened state with wisdom to share from that experience. I don’t know about the wisdom part, but I do know that there is meaning here and purpose, joy and awe and gratitude. Also a huge amount of grief, sorrow, pain and suffering. And those too live side by side.
My apartment in my independent living facility looks out on the Hudson River and I draw strength and peace from it, awe. The Palisades cliffs have changed from the green of summer to the spectacular colors of autumn to the stark brown of winter. The barges move past my window, and their work goes on. Life goes on.
When I was close to death this past summer, on oxygen 24x7, fluid filling one of my lungs, too sick to even tour the hospice where I planned to end my days, I knew what my job was and so did those around me. I completed my will, shared my end of life wishes with my family, gave away my possessions, accepted care from whoever offered it. And then unbelievably the study medication I was taking began to take hold and I started to gain strength, feel better, cut out pain medications, feel restless. We don’t know how long the medication will be effective: my oncologist tells me the median progression free survival time on this treatment is seven months. I am in month eight. I wonder if I will be like one of the cast of the movie Awakenings, where people recovered from catatonic states due to a new medication. And then the medication ceased being effective, and they returned to catatonia. Will this be me too? In the meantime, how will I live?
I never forget for a moment that I have cancer and that my life is precarious. But I have also decided to renew my social work license, which I had let lapse, am signing up for continuing education courses to support my license, rejoining the chorus I used to sing with (although I told them I might not make it to the concert in May), volunteering as a mentor with Imerman’s Angels (a volunteer organization that matches mentors and mentees who share similar cancer diagnoses), and have inquired about becoming a literacy volunteer. Helping others has always given meaning to my life, and as long as I am here and have the strength, I want to continue this. Along with hugging my grandchildren as often as I can, seeing family, friends, spending time outdoors, singing. Planning travel is more fraught for me but may happen. And I am trying to take care of myself as well as I can – on the one hand I think, I might as well eat those Oreos, and on the other, I want to be as healthy and strong as I can be.
I will be exploring all of this and more in the weeks to come. Do you feel you too live in a transitional space? What is that like for you?