“Well, Asha, congratulations,” my doctor announced as she walked into the room where I sat in a gown for my checkup. “You are a survivor!”
I stared blankly at her. I didn’t do anything to survive breast cancer besides completing all the treatments she told me to do. I happened to survive.
The word “survivor” seems so passive. My body happened to react well to the chemo and I was lucky enough that it didn’t spread to my lymph nodes. I was one of the lucky ones.
Many of the young women I had met and become friends with who had a similar diagnosis didn’t have the same luck. But that wasn’t their fault. We all followed the doctor’s protocols with the same hope of survival. Many of us all had the same positive outlook, thinking that we could learn from this experience and eventually move on with our lives.
My mom, devastated about my diagnosis found support through Mothers Supporting Daughters with Breast Cancer. Online she met a woman named Sandi, whose 22 year old daughter, Reigan also had breast cancer. Sandi and my mom began corresponding with one another daily, frequently discussing their concerns and fears of having a young daughter who might die before they did. Reigan and I began communicating via email.
Reigan was two years young than I was, and had been diagnosed almost the same day as I had had a similar diagnosis and treatment plan — stage 1, 4 rounds of AC (chemo) followed by radiation.
“Hi Asha! My mom has told me a little about you. I live in New Zealand and am going to be finishing my treatments shortly. It’s so comforting to know there are other young women going through this too. I often feel so alone.”
Along with her email, she sent a picture before her hair fell out. She was gorgeous – 5’7” with long blond curly hair, a huge smile, and a sparkle in her big green eyes. You could tell she was full of life and I knew immediately that we would be friends.
Reigan and I corresponded several times a week over email, asking each other questions that we couldn’t ask our friends or families. Whenever I had a concern or question or just wanted someone to listen and understand, I wrote to her. We talked about little things like how we hated getting flowers from everyone we knew because they died after a few days and it reminded us of how fragile life was.
She understood all the feelings I had, about being strong for her parents, about dating again once she finished treatments. She also understood the importance now of living in the moment and being passionate about what we do on a daily basis. We often talked about all the things we wanted to do before we died; about how this must be a blessing in disguise; how we were lucky that we had a chance to realize how important life is while we were still young.
Both of us would finish radiation around the same time. When either of us had a hard day, we’d encourage each other to keep going because we were almost done with treatments and that we were almost better. We talked often about our non-existent social lives that would improve drastically once we had our long hair back. Finally I had found someone who understood just what I was going through.
I woke up on June 10, 2000 and I couldn’t believe the day had finally arrived – my last radiation treatment ever…hopefully. I walked into the waiting room of the hospital proudly.
“Today is my last day,” I announced.
In a strange way, I almost became sad as I said these words. I had spent almost every day in this hospital for the last six months. What would I do with myself after this? It was my daily routine and a pattern I had gotten used to. I wouldn’t have to wake up at 5:30 a.m. anymore to get to the hospital and see all my favorite doctors and nurses. They all knew me here and had become my new friends. Bizarrely, I felt at home and comfortable here. Teary-eyed, I hugged a couple of them.
“I’m really going to miss you,” I told them.
“No you won’t. Don’t come back and visit. We love you but we don’t ever want to see you here again, you understand?” they told me.
I promised I wouldn’t be back.
When I got home, I had an email from Reigan.
“Yay, sweetie, we’re finally done. I’m so proud of us. Now we can move on with the rest of our lives. I love you! Love, Reigan” She had finished radiation a week before. I sent her a similar email in return. It was exciting and scary at the same time but I had waited a long time for this day and couldn’t wait to begin the rest of my life.
Breast cancer had consumed my thoughts and it was the major focus of the 24th year of my life. By now, my friends and I had renamed it “The Crapper” because it didn’t “hurt the heart as much as ‘Cancer’,” as my friend Liz put it. Every family function, party, get-together revolved around my crapper. I was so sick of answering the question, “how are you feeling?” that I began ignoring people when asked.
Many weekends of those six months of treatments were booked with visits from relatives, friends or both. While I appreciated these visits and felt loved, they were exhausting. I had no time to myself and hated talking about myself and the crapper to every single person. Mostly I hated feeling like I was a sick person.
My biggest concern after all my chemo ended was, “What do I talk about with people now?” I felt I didn’t have much to contribute to any conversation. The only books I had read in the past year were about breast cancer; the only new friends I met were from the hospital and the only daily activities I had besides work were doctor appointments; the only people I interacted with were people I already knew or people in the medical and breast cancer community.
Thankfully I had something to look forward to that had nothing to do with breast cancer when I finished treatments. My family had planned a bike trip across Tuscany before I had been diagnosed and it was scheduled for June 18, a week after I finished radiation. They had originally contemplated canceling the trip when I was diagnosed.
“Absolutely not. I will be joining you. It’s my present for when I’m finished,” I told them.
So when radiation began, I started taking spin classes, preparing to ride 100 miles a day across Italy. Some people thought I was crazy for pushing myself. But for me it was a release and a goal to look forward to, another thing I could put on my mental checklist to accomplish. If I could ride across Italy for ten days, I knew in the back of my head I could eventually be ok.
The bike trip was more unbelievable than I could have imagined. We rode through the hills of Tuscany, past cow pastures, up through villages where the locals greeted us with hugs. Life seemed simple there. The Italians understand the important things in life without having had gone through cancer. Their days consisted of waking up with a big breakfast of coffee and biscuits, walking down the street whenever they finished their meal and talking with their “coworkers” who happened to also be their friends and family.
After a two-hour nap in the afternoon, they’d head back to work. And they would end the day with a huge feast with their twenty closest relatives. I envied that they seemed to instinctively understand the important things in life. They hadn’t gotten caught up in the rat race of New York City, trying to be smarter and more successful than the next person. For them it was all about love (and food); money didn’t matter as long as they were surrounded by friends and family.
Reigan and I hadn’t emailed in a few weeks because we had both gotten busy with our new lives – she had started school again and I had been busy with my two jobs of teaching music and working at a breast cancer non-profit as an outreach coordinator.
A few days after returning from my bike trip my mom and I received an email from Reigan’s mom. She had a recurrence and this time it had spread everywhere. I was in shock.
How could this have happened to her? She had such a positive outlook. Would it happen to me also?
I sat at my desk attempting to compose an email to her. But no words came to me. I stared at the computer, my mind drawing a complete blank. She had been given two months to live. What do I say to that?
I could barely see the computer screen past the tears in my eyes. Without a clear head, I began writing whatever came to mind.
“Dear Reigan,” it began. “I can’t imagine how scared you must be. I wish I could be there right now to give you a huge hug…” I empathized with how frustrated she must feel to have worked so hard to rid herself of it just to have it return. I told her that I admired her strength and vitality in the face of all this and that she was my inspiration.
The next morning I sent her a little bracelet with a good luck charm and a health charm that my favorite cousin gave me when I was first diagnosed. It was the first time I had taken it off my wrist but I wanted her to have it. That afternoon I received an email back.
Thank you for your sweet email. I admit it was a shock when the doctors told me it had spread everywhere. I am scared, Asha, but it’s only because it’s the fear of the unknown as we have spoken about. I am at peace with myself. I have tried everything I could to fight this dreadful disease and I have no regrets. I have had such a special life with such wonderful family and friends. Many people don’t even live to my age, so I feel lucky to have experienced all that I have.
I have decided to spend the rest of my days at home with my parents, younger brother and three dogs. The doctors told me I could get back on chemo but it would probably only extend my life several months and that’s not even guaranteed. Or I can choose not do chemo at all. I am choosing quality over quantity of life and I feel content with my decision.
I am scared, but I am ok. Mum and dad are not. They don’t know what they will do without me. They keep saying again and again, it’s not fair—they should be the first to go, not me. I try to remind them to see the positives in this, not the negatives. I remind them daily that even though I won’t be here with them for much longer, I will always be looking down on them and loving them. Love doesn’t disappear. I don’t know what happens when you die but I do hope that I will meet up with them again when they are much, much older.
I am planning my funeral as we speak. I have a lot of friends and family coming in for it, and many have already booked flights to come visit. Everyone has been sending me teddy bears – I told them not to send flowers because they die too quickly. My mom told them to send teddy bears because I find them comforting to hold.
I am excited to see everyone. We don’t know how long I will be here, but they are coming early so we can spend some time together before I depart. I am busy putting together a slide presentation for it. I think it will be really beautiful. In it are pictures of me with different friends and family members at various stages throughout my life. I have also been working on a video where I say goodbye to everyone and what they have meant to me. I hope they will like it and I hope I can finish it in time. I am getting more and more exhausted each day as the cancer eats away at my body.
I didn’t want mum to tell you, because you and I are different people and my body just happened not to respond the way I had hoped. I know you are going to have a long and healthy life and I am going to live vicariously through you though I won’t be around to see it. I want you to do everything you’ve ever wanted to do and enjoy each moment you have. You are a special person with an amazing energy – take your candle and go light the world.
I love you. Stay strong for the both of us.
I emailed her several more time over the next couple weeks but didn’t hear back from her. Her mom wrote me a couple times saying that she was exhausted and didn’t have the energy to write but was thinking about me and wearing the bracelet I sent. I walked around in a daze for those two weeks just trying to get through each day.
I hadn’t seen Doctor #1 since I had finished radiation but I had an appointment with her the week I found out about Reigan.
That was when she congratulated me on being a survivor.
Breast cancer was like a really messed up girls club. Some people almost liked being in the club because they felt a sense of belonging that they must not have gotten before in their lives. I had done several breast cancer walks and spoken with tons of women who were months or years out of treatment. Everyone who had gone through treatments proudly announced that they were “Survivors.” Others who hadn’t had cancer often congratulated me on being a Survivor. To be honest, it always bothered me when they said it though I couldn’t put my finger on why exactly. Now I knew why.
“You know,” I said to my doctor, “I think there needs to be a new term besides “Survivor.”
“And why is that?” she asked.
“Everyone thinks that I’m a survivor because I had a great attitude. I’m not denying that a good attitude helps, but look at Reigan who is more positive than anyone I know and she was given two months to live after going through chemotherapy. It’s not her fault that she is dying or that someone won’t be able to call her a Survivor.”
I had met many people who were miserable and angry that they had to go through cancer in the first place, yet they were called survivors.
“Well, if you’re not a Survivor, then what?” she asked.
“I would rather be a Thriver. No matter how many days Reigan has left, she was and always will be a Thriver because she is living her last days to the fullest.”
Three weeks to the day that Reigan’s mom first called me, I got an email from Sandi.
“Reigan passed away last night. Before she went to bed, she called her father and me in to tell us how much she loved us. She told us she was going to move on soon to the next part of her journey and asked us to bring the three dogs in to sleep with her. I held her head in my lap, she smiled her last smile, closed her eyes and she was gone.
She made you a present before she passed and it’s already in the mail to you. You should be getting it shortly. She had planned out her funeral before she died and we will be having it tomorrow. It will be a celebration of her life. That’s how she wanted it. In the video she made for her funeral, she read this poem that I wanted to share with you.
Do not stand at my grave and weep
I am not there, I do not sleep
I am a thousand winds that blow
I am the diamond glints on snow
I am the sunlight on ripened grain
I am the gentle autumn rain
If I should die and leave you here a while,
Be not like others sore undone, who keep
long vigils by the silent dust and weep
For my sake turn again to life and smile,
Nerving thy hear and trembling hand to do
Something to comfort other hearts than thine
Complete these dear unfinished tasks of mine,
And I, perchance may therein comfort you. – ANON
Thinking of you.
I went home sick from my teaching job. I crawled into bed and finally fell asleep around 1a.m with a pillow drenched in tears. In my dream that night, Reigan came to me. She reached out her arm and draped it over mine. I hadn’t seen her approach me because my head was in my lap sobbing. I looked up and she was there with a smile on her face. She looked so beautiful and healthy.
“Asha, it’s OK. I’m OK. It was meant to be this way. You need to move on with your life. I had a wonderful life while I was there and now I’m happy here. Enjoy what you have.”
“I just feel so depressed,” I responded.
“Asha, rather than get upset, you need to take advantage of the time you do have here on earth. The only way for you to do this is to move on,” she told me in the dream. She smiled and put something in my lap. I picked it up and it was some kind of potted flower but I couldn’t tell what.
“But we hate flowers because they die…” I started.
“Not this one.”
And without another word, she left.
A week later a package arrived in the mail from Reigan. I unfolded the pink tissue paper. Inside I found a small pot with a plastic flower stem sticking out of it. Instead of a flower at the end of the stem there was a bear’s head. What was this? I saw a tiny card at the bottom of the packaging.
Asha, I made this teddy bear plant for you. Don’t worry. It will never die like the rest of our flowers. Look at the teddy whenever you need comforting and remember that I will always be with you. And always remember to follow your dreams.