Today I think of my mother. I take the day off. I see a movie that makes my heart full, I sip warm cups of tea, and snuggle in blankets with hound dogs, and I remember to text my dad and little brother.
I love you, Mom.
P.S. May 27 2016, December 16 2015, May 27 2015, December 16 2014, May 27 2014
She died. While I was on vacation, and not thinking about it, she died. I sent her a card, but I took eons to get it in the mail. I’m not sure she received it in time. Who will open the card? With the octopus, inside, promising a hug with all 8 arms. Who will sift through her things and decide whether the card is kept or tossed?
She died. I had kept such good tabs on her over the last several weeks, even installing messenger app to be able to more easily communicate with her. We texted a few times each day. When she said that things were getting bad, I started sending messages where I insisted she needn’t message back unless she wanted to. I told her that she could let me know if there was anything she needed, anything she wanted to talk about.
She died. I am living. Her cancer came back. Mine has stayed at bay. It whispers warnings on the wind, crashing the waves against the shore and rocking the boats as they travel on their way, but still it stays away. What did my cancer have that hers did not? What luck was I doled that she did not receive? What clemency did I earn in this life or another? I do not sit on these musings, I do not feel them rooted in my soul, I do not stew…but I breathe the thoughts in and out. I feel their depth and their impact. I acknowledge their power and shift them aside.
She died. She did not pass, she did not lose, she did not battle. I hope she knew that she could talk to me. That I would have listened to her think about death and dying, that I would have sat with her as she analyzed the movement from living to dying to death. I hope, that in some small way, I helped. I hope that she was surrounded by those who made her not afraid. I hope, I hope, I hope.
She died. And what does it all mean? The idea of her living on inside of me, that I am better because I knew her, even in the small fraction that I did. What does that mean? What do I do with that piece when I cannot give it back to her? When I cannot make her whole again? When I want to give it back and make her whole?
She died. Can she think, can she see, can she sense, can she breathe, can she feel the universe in a way unimaginable? I hope so. I hope, I hope, I hope.
How would you respond to the writing prompt, of a photo of the grim reaper?
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This writing comes directly from one of our participants in our Unspoken Ink Creative Writing Group for young adult cancer survivors. The participants meet for 2 hours each week, for 10 weeks during our Fall 2016 session. This writing has not been edited since its original creation, showing the wonderfully raw and powerful prose coming from the courageous writing group participants each week. If you’d like to sign up for future sessions, please email info@lacunaloft.org or sign up on our interest form.
A friend of mine is dying. I can’t remember if we’ve ever spoken on the phone. I know, with certainty, that we have never met in person. Still, I will call her my friend.
I met her on this young adult cancer journey of mine, just as I was beginning to grapple with everything that cancer had taken in its tight little grasp. We stayed in very loose contact, mostly over social media; liking photos and wishing birthday thanks as time went by.
Then her cancer came back and it came back with a vengeance. She sought alternative treatments and then resorted to chemotherapy. Before losing her beloved hair, she married her sweetheart. Just the other day, she made it to her 6 month wedding anniversary.
She wasn’t supposed to live that long.
I think of her every day. I think about what I could say to her that might help while still being fully aware that I don’t actually know her that well. I have never met her, never really carried on a conversation with her that didn’t revolve around cancer, yet I feel so connected to her. I think about what she must be thinking. I wonder if she is mad or sad. I want to ask her about death. I want to tell her that she can confide in me, that she can have the hard conversations with me if she wants, while also knowing that it is probably not with me that she wants to go through those transition-like talks.
I know, deep inside, that I want to have these conversations for her, but also for me. I want to hear what conclusions she has come to about death and dying, about heartache and loss, because the truths in her life right now frighten me.
I see in her what could so easily happen to me.
Today would have been my mother’s 60th birthday and my parents’ 38th wedding anniversary. I write about her on two different days each year: her birthday and wedding anniversary, and on the day that she died.
I’ve written a bit about missing my mom in the past, about various thoughts I have on death and dying, as well as end of life planning. I’ve written from the perspective of being her caregiver. Today, I have little to say…just a mixture of happy and sad feelings in my heart. I regularly think about giving her a call. It usually takes a few happy seconds before I realize I cannot do that.
This summer I am embarking on a journey with my father on the Pacific Crest Trail. This trek is so much about her, and so much about him, and so much about all of us. Death causes rifts. I feel like ours is just starting to heal, to scar over and adapt to the passage of time.
P.S. December 16 2015, May 27 2015, December 16 2014, May 27 2014
Welcome to the comments and discussion of Chapter 7: Mortality Bites of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s! Catch up on Chapter 1: Ramenonmics, Chapter 2: When G-d Things Happen to Sick People, Chapter 3: Single, Chapter 4: Human Spectacles, Chapter 5: Malignant and Indignant, and Chapter 6: Something in the Air.
Let’s get started! Chapter 7!
This chapter was hard for me. The phrase mortality bites hits the nail right on the head. Living is hard. Living with a cancer diagnosis, manifesting itself into chronic symptoms that may or may not be taken seriously by a healthcare team bites. Outliving a loved one bites.
“My brother’s death was an awakening for me. For me, cancer was the C word at that point. I had to dispel a lot of fear around the C word. I finally realized that cancer can be a vehicle for transformation, even if it means death.”
“Mourning someone I had met only once for four hours felt like an act of trespassing, as if I were sneaking into the backyard of those who were grieving the loss of Amilca as a wife, mother, a daughter, a sister, a friend.”
Man oh man…I underlined more in this chapter than in all of the other chapters combined. Over the weekend, while at CancerCon, I had the privilege of volunteering for the Chronic, Metastatic, and Advanced Cancer session. I walked into the session, introduced myself to the two women running the hour and a half discussion, and figured out what my role would be in time keeping and tissue monitoring. I made it very clear that I was not a metastatic patient, respected the safe-space needed by those who were, and insisted that I therefore not actually participate in any of the sharing/participatory pieces of the session. I knew when I walked into the room that my role would be one of quiet support and love.
It was one of the hardest hour and 30 minutes of my life.
These brave and courageous souls shared of their fears of being forgotten, their acknowledgements that death could be close or far away, and the silent truths held by those who face death and mortality every.single.day.
I had trouble holding in my emotions during various points in the session. I looked up at the ceiling a few times, willing the tears to stay in my eyeballs. I wiggled my toes and started messaging the other members of the steering committee with about 20 minutes to go, hoping someone could grant me access to the locked room we stored our CancerCon-magic-making supplies. I needed a place to let it out and I knew that I could not do that while in the session or out and about the rest of the conference.
Usually, when I am scared of something difficult and cancer related, like death, my healthy peers wait it out as I speak (or blather) while keeping their distance physically and emotionally. When I finally was able to burst through the door into the steering committee office, tears flooded from my body and I spent the next 20 minutes repeating myself and shoving starbursts into my mouth. My fellow steering committee member hugged me with tears filling her own eyes. Slowly, other steering committee members started coming in. Each one would hear what I needed to say and start to cry themselves, hugging me all the while. They stepped up, came forward, and stood with me emotionally and physically as I melted into fear and anxiety.
In that moment, I knew that I needed to be a part of CancerCon and the steering committee for the 2017 conference. Understanding the frightening reality running rampant in the Chronic, Metastatic, and Advanced Cancer session is not for the faint at heart. And most of my healthy peers refuse to approach the issue with any authenticity. I get it! I really do! It is scary thinking about an illness manifesting itself into something that cannot yet be cured. I live with that fear though, and my fellow young adult cancer survivors do too.
Thank you to all of the young adult cancer survivors who have shared their stories with me; who have given me pieces of their courage, their warmth, and their love. I am forever grateful for the tears, fears, laughter, joy, and love that we have given. Here is to sharing so much more quality of life together, even in cases where quantity of life is lacking.
And to all of those metastatic warriors out there…you are my heroes.
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Thanks for joining us for our Chapter 7: Mortality Bites of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s! Join in next Monday for Chapter 8: The Myth of Eternal Optimism.
If you’re just joining us, here are some logistics:
We will talk about a chapter each Monday until the book is done. Then, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss. Join in, in the comments every week! Also, there will probably be spoilers. Read along with us!
How are you enjoying our young adult cancer book club?
Part One of Young Survival Coalition’s Pink Elephant End of Life series was wonderful. The conversation was enlightened and captivating while offering down to earth and relevant information. If you missed the live streaming event you can watch it all via youtube, anytime you want!
If you watched the event and want to share what impact it had on your own planning, let us know!
Part Two of the series has been scheduled for January 13th at 9 pm EST and will be a lively discussion with Michael Hebb, founder of Death over Dinner. Find out more about the free, live streaming event by going here. Young Survival Coalition has worked hard to put on a meaningful and enriching series and you will not be disappointed.
These end of life discussions are important to have even before we feel the end of our life approaching. Young Survival Coalition’s End of Life series can help you figure out what information you need, who you will want to include, and how to go about planning for everything in an easy to digest live streaming format. Check out Part One if you missed it and sign up for Part Two today!
Did you check out the first part of the End of Life series? What do you think about the speakers and topics so far?
The Young Survival Coalition along with Kate Adelstein of the University of Virginia are hosting a three part “End of Life” series. The first part of the series is being live streamed on Thursday, December 10th at 8 pm EST/7 pm CST/ 5 pm PST and will be one hour long. If you want to attend the event, you must register here. Though Young Survival Coalition serves the young breast cancer population, you need not be a breast cancer survivor to attend the series!
While talking about and thinking about end of life can seem like a “morbid” or “negative” experience, let’s take a second to consider what happens when we do not have these conversations. If someone you are helping care for dies…
What type of structure will the funeral or memorial service have?
How would they like their body to be dealt with?
How would they like their belongings and/or wealth to be distributed?
Who should be included in the funeral or memorial service?
These logistical questions are hard to make when dealing with grief and we want to make these decisions while being well informed on the desires of the person being celebrated. Logistical conversations are not the only ones to have surrounding end of life. Where can you go to “find” that person once they have died? What might they want to have you remember once they’ve died? My mother told me specifically that I could talk to her anywhere I might be. This thought has remained a calming one for me throughout the years since her passing. That specific conversation with her happened years before her cancer diagnosis. Not being close to the end of your life does not mean that you can ignore your end of life discussions.
Part One of the series, “The Research & Benefit of Introducing Palliative Care Early in the Cancer Journey,” is supported by “key findings from an Institute of Medicine report that those introduced to palliative care may live longer than those who do not receive this kind of support.”
Will you attend the series? Have you discussed end of life preferences with your family or in a formal document?
From the moment I was told, “Your son has cancer”, I had hope. I was filled with it. It was the feeling I had when looking over treatment plans. It was what I thought I heard in the doctor’s voices when they were telling me what we were going to do next. It was the word I heard the most often from people.
“We are hoping for the best.”
“We hope that the chemo works.”
“We are holding out hope for a miracle.”
“Don’t lose hope!”
It was the name given to the Facebook support page. “Hope for Sebastian”. It was on the t-shirts we had made. Hope was everywhere.
When you are a parent, you have nothing but hopes and dreams for your children. From the moment my children were born, I had all these great ideas about who they would become, and what kind of lives they might have. I pictured them riding bikes, losing teeth, going on dates, graduating high school, getting married, starting families. I had hope that they would each have the best lives imaginable.
But then cancer showed up. And my hopes for my son changed. It went from hoping for him to get into a great college to hoping that this round of chemo doesn’t make him as sick as the last one. Hoping that he might get to go back to school for a little while. Hoping that he won’t have to be in the hospital for his birthday again. Hoping that the test results show improvement. Hoping that the treatments are working. Hoping that the cancer will go away. Hoping that he won’t die.
I continued to hold on to that hope. Even when the tests showed that the drugs weren’t working. Or when we changed drug trials. Or when we switched hospitals. Especially when we switched hospitals, because the newest hospital had a team… one that specialized in Sebastian’s cancer. New found hope! Surely they would find a way to fix this.
A year later, after countless clinic visits and chemo rounds and tests and scans, the doctors told us that we really had no hope of curing Sebastian’s cancer. They told us that everything we could do would just give him a chance at a little more time. The doctors actually said “no hope”. No hope? I’m his mom… I can’t give up hope. This is my son, my child, someone that has all these plans and dreams waiting for him. How can I stop hoping he will get better? I can’t give up hope. I just can’t…
Last spring, the side effects from all that hope-chasing caught up to us. Sebastian ended up in the hospital for 12 days with multiple infections, and we were all afraid he wouldn’t be able to get through them. A DNR was put into his file. His grandparents dropped everything and came to town to stay with us. We had conversations with his pastor about funeral plans. Reality slapped us all in the face. But, our hope prevailed, and the antibiotics cleared the infections up, and we started talking about what we were going to do next. But Sebastian had other plans.
Towards the end of that hospital stay, Sebastian decided that he was tired of doing this. He was tired of the hospital stays, he didn’t want to keep making himself sick from chemo, he was tired of missing out on his life. He asked me if I would be mad at him if he decided that he didn’t want to fight his cancer anymore. He was letting go of his hope for a cure, and just wanted to live his life out, his way.
So, last July, we stopped his treatment, and started him on hospice care. No more chemo, no more weekly clinic visits in Chicago, just pain management and hospice nurse visits at home. I keep in touch with his oncologist via text on a weekly basis, just keeping an eye on how things are progressing. And for a while, nothing was happening.
Last month, we decided to do a set of scans because his pain was getting worse, and spreading to new areas. The scans confirmed our fears, his cancer was spreading. I looked at the scan results, and my fears were confirmed and that hope I had been holding onto for so long was crushed. He is getting worse. His cancer is not going to go away. Sooner than later, my son is going to die because of this. I cried, I shared the news with friends and family members, I told my other children what we had found out. I looked at what we had and I accepted it.
I let go of the hope that he would get better. That fight I had been fighting from day one, thinking he was going to be the one that beat the odds, even though the odds were completely stacked against him from the beginning. I accepted reality and let go of the dream. I just let it go.
I slept for 13 straight hours that night.
Holding on to hope for something that isn’t possible is a lot of work. I didn’t realize how much work it was until I stopped doing it. People have a misconception that having acceptance about something means that you have to like whatever it is. That is not always the case. Accepting something means only that. You accept it, and let it be what it is, and you stop trying to will it to be what it isn’t.
I’m not saying that I don’t have any hope anymore. I still have an overabundance of hope, but today it’s for different things. I hope for comfort for him, that he can handle his pain. I hope for strength for all of us to get through what is coming, together. I hope to draw closer to my family while we face the things ahead. I hope that Sebastian continues to find things to make him happy. I hope for him to have peace. I hope for just a little more time.
Recently, a new friend of mine asked me about my story…about my mother’s death and about my own cancer diagnosis. While seated at my lovely friend’s dining room table, all the time hand sewing a gift for my grandmother, I told the cliff notes version of my mother’s diagnosis, treatments, and death…followed ultimately two months later by my own Valentine’s Day biopsy surgery and my own diagnosis.
I cried….but I did not fully enter that space either. That space of sorrow and loss still feels like such a black hole of grief and pain. So much still feels missing from my life since my mother left.
I wish that my mother could see what I have tried to build here…what Lacuna Loft has come to mean to me. At the same time, without my mother’s death I’m not sure Lacuna Loft would have come to be. It is intriguing to me how these things in life evolve. How rebirth can come out of such loss and sadness.
When we went to St. Louis Children’s Hospital in October 2011 and was told, “Your child has cancer”, naturally, the plan was to fight. To do everything in the doctor’s power to get rid of Sebastian’s cancer. So, that’s what we did, and Bastian was led down a path that consisted of chemo, radiation, bone marrow transplants, pain, nausea, more chemo and more pain. He spent countless days in the hospital, missed out on school and friends and birthday parties and swimming. He lost all of his hair, and a quarter of his body weight. The treatments made him so very sick. And all the while the scans continued to show no disease improvement. The treatments were not working.
In June, the side effects of the chemo and radiation caused him to have to get a urinary catheter due to damage in his bladder. Complications from the catheter landed him in the hospital for 12 days with several infections. Right about the time he was being released from the hospital, his docs gave us the treatment options available for him. After several discussions about what the options are, Sebastian finally tells us, he doesn’t want to do this anymore. He doesn’t want to keep making himself sick. He wants to stop.
Imagine making this decision for yourself, knowing that nothing you do will take your disease away, and everything you are doing is potentially causing more pain and more problems. Would you know when to say when? At some point, the desire for quality over quantity would present itself, and that’s where Bastian is.
We’ve known for a long time that we would be faced with this decision; I just didn’t think that Bastian would be the one to bring it up. The docs told us a long time ago that there is no chance of curing Bastian’s cancer, and that everything we are doing is an attempt to give him more time. After his last stay in the hospital, Bastian said he wanted to spend the rest of his time with the people he loves, not taking things to make himself sicker, and not constantly being hooked up to IV’s. He wants quality over quantity. His decision was not accepted by a lot people in his life, particularly his peers. They don’t understand how “he can just give up”; they think he should try every single thing possible. But those of us close to him know that this isn’t him “giving up” or “choosing to die”, this is him choosing to LIVE.
This is the ultimate act of letting go. Letting him make this decision, and follow through with it, means that we aren’t doing anything to slow his cancer growth, and that he will die from his disease. But letting him make this decision, and follow through with it, means he gets to live the rest of his life on his terms. And that is much more important to us.
Stopping cancer treatments is a difficult and painful decision. Have you experienced something similar?
