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In the last years of my mother’s life, she struggled with dementia. She was a mild-mannered woman who enjoyed reminiscing, so whenever I visited, we would look through lots of old photos, a pastime we both enjoyed. There was one photo in particular that I loved looking at, a photo of my mother, aunt, and grandmother taken long before I was born. The women were so different in their personal styles but so close as a family. It looked like it was taken in the countryside somewhere and the three of them appeared happy, young, and beautiful. They had their whole lives ahead of them, lives that were eventually filled with children, grandchildren, and great-grandchildren, with good times and bad times, and through it all the secure connection of family to share their lives  with. Whenever I look at the photo, I think of the life they had yet to live, and all the experiences they had yet to live through.

 

It’s a timely reflection for me now because I’ve gone through six rounds of chemotherapy for angioimmuniblastic T-cell lymphoma, and I am in my 142nd day of recuperating from a stem-cell transplant. My immune system is slowly recovering, and my new stem cells continue to get bigger and stronger every day. When a year passes, I will get all my immunization shots once again, plus some new ones, and celebrate what stem-cell transplant patients call a rebirth. I think of this now because, like the photo, I realize that there is still a lot of life ahead of me to be lived and enjoyed.

 

When I tell friends and family that I completed treatment successfully and am in remission, or that I am cancer-free, everyone is overjoyed. My hair is beginning to grow back, and this can all be put neatly in a box of  memorabilia and stowed away on a shelf in the closet. It feels like the general expectation is that it’s over now and life can resume again. We don’t have to talk about the thorny subject of cancer anymore, and yet for me, even though it’s over, it’s not really over.

 

I am thrilled that I finished chemotherapy and that I survived a stem-cell transplant. Still, the transplant process was more complicated than I anticipated, and after four months I still tire easily, I don’t feel as focused, and odd things happen to my skin. Sometimes it feels like I am being stuck with a needle from the inside. I get nauseated and have digestive issues. I am constantly monitoring what I eat in order to try to find a pattern or way around the upset stomach. I remind myself, however, that I did survive, and that’s a blessing. It might not always feel that way because the side effects I’m left with are constant reminders. When people express their joy over my being in remission, I agree in earnest because the ordeal of the past year is over, but I don’t necessarily feel  the joy of being “cancer-free” or of being in remission (my doctor said they mean the same thing).

 

To me “remission” implies that there is the possibility of cancer hiding somewhere in my body while “cancer-free ” means just that: being rid of cancer. After speaking to my doctor and reading the reports, I believe that cancer is gone for now, but it might return someday when I least expect it, when I let my guard down and move forward with life, which is proving to be more difficult than all the ordeals I have gone through so far. Part of the difficulty is that now I have a bit more energy but the number of COVID-19 cases continues to rise, and even though vaccinations are forthcoming,  we don’t know when we will get them, so though I have more energy, I can’t do much with it. I hadn’t noticed how restrictive COVID-19 was during my chemotherapy and stem-cell transplant because dealing with my illness took up most of my attention, so now I feel like I am experiencing the frustrations of COVID-19 for the first time. Cancer and COVID —the two C’s — continue to hang over me.

 

Today my treatments are over, I am in remission (or perhaps cancer-free), my appointments with doctors have dwindled, and my hair is growing back. By these indicators one would think that it’s time to move forward and put this all behind me, but I’m noticing that I can’t. Cancer has made me more vulnerable. There is a mass of conflicting emotions I feel throughout the day. I often feel sad and think I am grieving the loss of my health, as the ever-present symptoms and side effects — exhaustion, stomach and skin issues, the inability to focus — are still with me, and they continue to hold me back. What’s more, when I retired five years ago, I was confident that my life would continue to be productive, but now that confidence has been taken away from me because of the two C’s. I feel like I need to rebuild from scratch. Because I feel unfocused, I don’t know what direction that rebuilding should take, and equally distressing is that my creative energy eludes me. When I was going through cancer treatments, I didn’t have to think about all of this because my attention was fixated on treatment itself, but now I am feeling weighed down by loss and the fear that there will be no regrowth. I miss the single focus of treatment: it gave me a mission.

 

I realize, however, that not all is lost.  Even though I am heavy-hearted, I must still remind myself of my skills, accomplishments, and creative abilities. I am immersing myself in sadness, which is all right for the time being, but not as a way of life. I choose not to fight sadness, but instead let it run its course, as I believe all my feelings need to be validated before they can be dispelled. I know from other life experiences that it doesn’t last forever. This is not the first time I’ve experienced sadness, and in the past I realized that when the weight of sadness gradually lifts, I learn something about my strength and resilience. This time may feel different because I haven’t been in this particular situation before, but, as I write this, I wonder how many times I have said that to myself. Perhaps that is a resistance in me that doesn’t want to let sadness go yet. My coping skills will once again be challenged and stretched, and I will once again be able to move forward, because I remember that I have access to the key: trusting and having faith in myself.

 

Helping myself out of this phase of sadness requires galvanizing resources. I have found that joining groups virtually or on social media with other cancer survivors provides a sense of validation. It eases the sense of isolation knowing that someone else out there is experiencing something similar to what I am going through. Keeping a journal has been a major source of comfort to me since my teen years and, more recently, writing and sharing my work online have all been channels of self-expression and catharsis. In essence, though there might be a desire to pull the covers over my head for an indefinite amount of time, talking, sharing, and connecting with others are important parts of the remedy.

 

The ordeal of being diagnosed with cancer, going through multiple courses of treatment, and the gratifying achievement of remission is a taxing experience both physically and emotionally. Practically speaking, life cannot go on “as usual.” Life is always presenting us with changes and challenges and so our task is to move forward and have faith in ourselves that we will eventually feel better. We deserve to treat ourselves with kindness and gentleness. Elizabeth Kubler-Ross, so many years ago, wrote about stages of loss and grief: it starts with denial then moves to bargaining, anger, depression, and, finally, acceptance. It is said that we go back and forth through all these stages until we are ready for acceptance. I experienced these stages many times in my journey with cancer, some feelings like anger and sadness more than others. I never found myself bargaining, perhaps because I spent so many months trying to find a reason and solution for my symptoms. By having faith that life is a process and that we will not feel this way forever, we can summon the strength to know that we have the skills to get through it, and we are getting ourselves ready for the gain. We will once again look forward to what’s ahead for us: life that has yet to be lived, like my family in the photo.