I don’t know how long I sat there. My hands were clasped in sweaty-palmed desperation. My eyes were shut and my jaw clenched. The office bustled around me and phones rang. I ignored the morning commotion of the sales office and concentrated. I was praying. Bargaining, really. I was cutting deals left and right with God.
I was praying so hard I was sweating. I was praying with my whole body, physically willing God to listen to me. I laid everything I had in me on the table.
I was praying for my brother to have cancer. To have a specific type of cancer. We already knew that he was sick. We already knew that is was malignant and that it had spread. We had been told that it was cancer. We just didn’t know what type. We were given two probabilities. One awful, the other devastating. I was praying for my brother to have the awful kind of cancer. The one that had a slightly better chance of survival.
And even though every muscle in my body was tense with fear, I had to resist the urge to laugh. The absurdity of my feverish praying. Please God, please. Let my brother have Rhabdomyosarcoma. Please. We will fight it and we will make something good come out of it. Just please, if you can’t make this all go away, please let him have this kind of cancer.
I don’t know how long I sat in my cubicle going round for round in the deal making. At some point, I unclenched my hands and loosened the lock in my jaw. It was time to leave for the hospital. I took a moment to assess. I decided I felt good. Optimistic. Strong. I was sure in that moment that we were not going to hear fantastic news, but it would be something we could deal with. I relied on this gut instinct to get me out of my chair and out the door.
I stood up and steadied my shaking legs. I had to pull myself together. I ignored the stilted air escaping from my lungs, and walked to my car.
Driving to the hospital I almost felt a sense of peace. It’s going to be ok. With deliberate casualness, I made my way through the sterile halls to my brother’s room. I must have been late, or the doctor was early, but when I opened the door the heaviness in the air spilled out the doorway and almost took my breath away. I took in the scene. Everyone was expressionless, listening to the doctor speak. I looked over at my brother, leaning against the propped up pillows in the bed. When I saw him I went weak with fear. His face said everything and nothing. Stone faced, eyes dark. He didn’t move. He stared at the wall and I felt terror at what he might be seeing. I felt any bit of hope drown in the heaviness of his empty gaze. I swallowed hard and turned my attention back to the doctor as he finished his sentence…
“We have seen some cases of survival.”
Some. Some cases of survival. What does that mean? But I knew what it meant. He had deliberately and carefully emphasized the word “some.” He was going to great pains to not give us false hope. I heard a blur of words as my head started spinning, “Stage four.” “Aggressive treatment.” My brother didn’t have the awful kind of Cancer. He had the devastating kind.
The nightmare we’d all been denying was playing out.
I wanted to scream and rip out the blinds and throw stuff. I wanted to run out of the room and escape. I wanted to run to the doctor and shake him and beg him to make it go away, to take back the words he’d just said. I wanted to run to my brother’s bed and hold him. To tell him that it would be ok. That it was all a mistake. Please don’t be scared. Please don’t give up. Please tell me you’ll fight this and win. I didn’t do any of that. I couldn’t move. He was my baby brother, the annoying kid that teased me and played pranks on me. The brother that I was supposed to protect and look out for. And I felt like I was letting him down, just standing there doing nothing. I didn’t know what to do, how to make this better. I was lost. Completely, fully lost.
We all were trying to process what we’d just heard. We were all doing our best to keep it together and be strong. My brother didn’t move. Didn’t acknowledge that he’d heard a thing. He just stared at the blank wall with a dullness I had never seen in his eyes. The look on his face broke me.
I think I may have let out a whimper. I ran out of the room, disgusted with myself even as I was doing it. Fleeing. Avoiding. I exploded into violent sobs on the floor. My mind was racing while my body was revolting to the news. I tried to imagine what was going through his mind. Was he thinking about dying? Was he scared? Was he pissed? He just stared. I couldn’t stop seeing his face.
I worried that they could hear me, but I couldn’t control any of it. I was helpless. My body was reacting physically and bearing witness to my lack of control. I couldn’t control the manic sobs any more than I could control my brother’s cancer. It was the first time in my life I had no idea how to proceed. I had never not known what to do next. I had never not been able to find some sliver of hope. I had nothing. I was empty.
My brother began chemo and radiation immediately. Our lives became littered with new language. Words we’d had the luxury of never learning the meaning of before. We learned about the limited options of being diagnosed with a rare pediatric cancer. We learned about the lack of treatments tailored to my brother’s disease. We learned that Oncologists had to get creative when it came to treating diseases like Ewing’s Sarcoma. Our roles changed. My mom had to become a nurse to her 16 year old son. My sister and I took to researching and reading and digging to find any treatment or obscure therapy that could help. We all fought.
My brother fought. He fought with an easy grace. The stone face with the dark eyes I saw in the hospital that day- they were replaced with the laughter and mischief that always played on his features. He joked his way through treatments, he kept us all laughing and strong. He did stuff that teenage boys are supposed to do- hang out with their friends, cut up and get into trouble. I don’t have time for cancer he would say as he would head out the door and brush off my mom’s concerns about him over-doing it. He gave us all a little hope while he did the heavy lifting. We occasionally even felt joy that wasn’t laced with fear.
Eventually, the cancer had it’s way. Cancer took his life from us a few months after he turned 18. The shock of loosing him wasn’t dulled by knowing it would happen. I still have trouble comprehending the fact that he won’t be walking through the door.
I still feel my heart stop when I think about that look on his face that day in the hospital. It’s a memory I don’t visit often, but when I do I’m right back in that room. All of my fears live in that room still. When someone in my family gets sick repeatedly. When my four year old son had an unexplained illness that wouldn’t go away. When the doctors were running test after test. There are many times I’m right there, standing on the edge of panic and despair. The reality of a devastating diagnosis too real, too fresh in my mind.
I have had to learn to fight those fears. I have learned to walk out of that room calmly now. I think about my brother. His fighting attitude. Every time my thoughts and fears threaten to take me back to that place, I remember his words.
I don’t have time for cancer.
Today is Rare Disease Awareness Day. Please consider, when you decide where your charitable dollars are going, that some diseases don’t get much attention or research. That parents are spending hours raising money for treatments and clinical trials when they should be able to focus on spending time with their child. That approximately 50% of the people afflicted with rare diseases are children and of those roughly 30% will not survive. That 95% of rare diseases don’t have even one FDA approved drug treatment.
53 Responses
This is so beautiful and such an inspiring tribute to your brother and Rare Disease Day Gretchen. I can feel your pain through your words. I am so sorry. Love you!!
Thank you my friend. Love you too. <3
the memory lives on, bless his courage, it is inspiring, thanks for sharing, this life is only a step, amen
Thank you so much, that is a beautiful sentiment.
they say we learn every day, and the trials of those who go before us, help us to understand that little bit more, thanks for your comment
You are beyond brave to write this. And urging people to help in the battle to end rare diseases is a beautiful way of remembering and honoring him.
Thank you Robin. If he had survived I’m pretty sure he would have been active in some of these causes.
Gretchen,
The leukemia my sister died from had a specific pediatric treatment and a specific adult treatment. She was 20 years old and they had no idea how to treat her. Thank you for sharing your story. Rare Disease Day needs to get more recognition. There is now a cure for the leukemia my sister had.
Amie, I can’t imagine how bittersweet it is to know that there is a cure for her cancer. My family started a grant for research for Ewing’s. I will celebrate in a HUGE way when they find a way to cure it. But at the same time, there will be a part of me that will be immensely sad that my brother couldn’t have benefitted from it.
You’re amazing, you are doing wonderful, incredible things in his name, and I think he would be proud of you. By striving to raise money and awareness, you’re giving families in this awful situation that very thing – time – the time they *don’t* have for cancer, to spend with their loved ones who have the diagnosis.
Bravo, my sweet, brave friend. <3
Oh, Lizzi. To think he would be proud of me? I don’t know. I really hope so, the thought makes me want to cry. He always told me that he just didn’t want me to get old and “uncool.” (I was the cool sister, my older sister was the motherly one) I hope I’ve at least *maybe kind of* accomplished that at least. Thank you my friend. <3
OHMIGOSH, G, you are the FURTHEST THING from uncool! You go to festivals and rock concerts. You visit Texas to hang out with bands of women you’ve never met. You love music HARD, you write REALLY really Real, and YOU SASHAY!
Geeeeeeez, you’re INCREDIBLY cool!
Added to which, you’re taking your love and grief and doing AMAZING things with it – he would ABSOLUTELY be proud of you. None of it is done in a self-pitying way, or in a way which holds back – it’s all there, laid out, with his character bold as brass and centre stage, demanding attention and INSISTING that we, the reader, focus on the devastation which can be wrought on families due to shitty rare diseases. And you’re doing it while we all have time to consider. Time to think about it. That’s the real gift – you’re doing this while we HAVE the time.
It is kind of bizarre to think about praying that way, but I completely understand. Gorgeous way to bring awareness and also express those fears so many families face in situations like these.
It was completely bizarre to be praying that way. It was desperation. They offered us a little bit of hope, that if he had the other type of cancer that they had better treatment protocols. (and Rahbdo is also an insidious, awful, deadly cancer) Before that moment I prayed for it to be something not terminal, not cancer, not too serious or debilitating. You name it, I tried to cover all the awful stuff. Thank you for your sweet words. <3
Very powerful writing, Gretchen. I remember every bit of this as told to me by your mom. My heart was broken then and it still feels broken reading this. Much love…Nan
Sent from my Sprint Samsung Galaxy S® 6.
<3
I just want to hug you. <3
One day, we’ll meet up at some blogging or writing conference or a meet up like we used to talk about in the Bunker. I’ll take you up on that hug then. Thank you my beautiful friend <3
Thank you for sharing your story. I needed to cry. My daughter has a rare sarcoma. People with it rarely live for 5 years. She is up to 3.5 years. Not sure how much longer I will have with her.
Oh, Helen. I am so sorry. I have so many questions. I tend to ask questions and want details to maybe be able to offer some kind of hope. But it’s probably best for me to say that I am so sorry you are going through something no parent should ever have to withstand. I saw what my mom went through and she is one of my heroes, was definitely that for my brother. I can only imagine that your daughter looks at you in the same way. *hugs*
Thank you for sharing this. I want to say a million more things but I am speechless. My heart…..
<3
Hugs
Thank you. <3
There are no words. I love you and your family- amazing people.
I am so sorry for your loss. Thank you for letting us share in his story and strength.
Thank you so much Lynn.
Amazing piece. You have unfolded it very well. I love that line of your brother’s, I don’t have time for cancer.
It was his mantra throughout his year and a half of treatment. He was determined to soak up life with the time he had. Thank you for coming here and reading this.
Hugs to you. Three years ago, I lost my brother to stage four lung cancer only 2 days after we found out. While he was in his 50’s at the time and refused to see a doctor for his breathing problems, it doesn’t lessen the pain that is felt. And when I think of him, mostly, I remember our childhood together.
Jennifer, I am so sorry you lost your brother. My brother was young, but I mostly think about his teenage years. That’s when we became friends and not just brother and sister. And no, age doesn’t make the pain less. Losing someone you love hurts no matter what age they were. *hugs*
I have never had to suffer the kind of devastation you describe, and your words, strong and beautiful as they are, I’m sure don’t even scratch the surface. But they open the window to who you are, and we are all blessed to see that view. My condolences on the loss you live with every day, and I hope that sharing with us offered you some small sense of relief.
Thank you so much Erin. Every time I write about him I feel like I process some of the grief. It doesn’t make it go away but it helps me deal with it instead of trying to ignore it. Writing has been incredibly therapeutic in that way.
Your words are so powerful they made me go back to my family’s experience with the illness – deadly cancer – of my sister in law, a mother of two children who passed away three years ago after a brave fight against malady. I think of her every single day: she wanted to live so desperately… we wanted, needed her to live so desperately. Those days, two years and a half, watching her going away although chemio, radio and surgical therapies, changed my life, and the way I look at life, forever. Sorry for my poor english: I am reading your post at the table kitchen of my home in Milan, Italy. God bless you and your family.
I’m so sorry you lost your Sister In Law. It is so incredibly sad to think about that as a mom, leaving behind children. And I think it does change you, being close to someone who’s that sick and seeing everything they go through. It makes the unthinkable a reality. It absolutely changed my life forever. I don’t stress about the little things. To me, any day that someone I love is not gravely ill is a good day.
It’s the same to me. That experience changed my order of values forever. At the end of that terrible year I lost my job but I felt I could manage it and that it was nothing compared to the loss of a life. On the other hand, now I feel myself and people I love so frail and so exposed to illness, to the changes of fate… I have come through it but it’s been devastating. Thank you Gretchen.
Oh, Gretchen. I can’t even begin to find the right words to say. Love to you, beautiful friend.
Thank you so much Sandy. <3
Once Cancer comes a’knocking, it never really goes away, does it? Whenever I have an ache, even if it’s just from something simple like sleeping awkwardly, there’s that mote of a thought, sneaking in under the door. I’ve reached the point where I can say, “Hello there, now turn around and march back out”, without too much effort, most of the time. Hope it works that way for you too. 🙂
I’m mostly guilty of worrying about it with my kids. Last year my son was sick almost once a month, for about 12 months. I had a few teary-eyed moments of “What if…” At one point, I had to have a talk with his doctor to make sure they weren’t missing anything (luckily we have an amazing doctor who I trust) Once you see a healthy kid get taken down so quickly it’s too easy to go there in your mind. I’ve gotten much much better over the years. The last thing I want is for them to pick up on my worrying and absorb that.
My daughter died of the awful kind of cancer, it gave me a little shock to see it named here. Then you read through the comments, all the losses, all the grief. Some days it’s just too much, but I do believe the sharing of it helps.
Kiri, I can’t say how sorry I am that you lost your daughter. I have watched my parents go through the worst pain any parent can endure and my heart goes out to you. And I feel terrible that seeing this caused you any shock or pain. I hope that this did not come across as glib towards Rhabdomyosarcoma. I tried to be very careful to make it clear that it is also a horrific, insidious cancer. And I also tried to make it clear that praying for it was a desperate (and probably not the most coherent of thoughts, it of course was a terrifying moment) plea for some glimmer of tiny hope. I hope that came across.
And yes, some days it is too much. Some days I can’t read about other’s loss. Other days, it helps. I know how I feel when I hear of someone having Ewing’s. Just hearing it takes me back to those terrifying moments. And sometimes I have to stop reading or turn off the tv when I see those stories. We must always take care of ourselves and be gentle with our grief, that is what I’ve learned from my mom who is incredible and one of my heroes. Thank you for coming here and reading this even though I know it couldn’t have been easy.
Oh no it did not come across as glib at all, sorry I didn’t meant this as any kind of criticism, I can totally understand this impulse. I have probably wished my daughter had ALL Leukaemia (the highest cure rate) and those whose children have been in the small percentage who relapse terminally from ALL probably wish their child had the other kind. Reading it was a little shock partly because it is hardly ever mentioned anywhere and I don’t even use the term myself often, because you then have to explain what it is. I just say cancer.
You do have to pick your moments when you feel strong enough to read about others’ loss and I often quickly scroll past news stories on days I when I know reading them would just break my heart.
Still I think sharing grief is so important. It’s brought me a community of people who understand me and it’s also brought me some peace. And I cannot count the number of people who tell me that Zoe’s story has given them pause to think about how they are living and parenting.
Thank you for sharing your experience. I was especially touched by Lessons from the worst day of my life, which I reblogged on my blog a while ago.
I’ve been blessed beyond measure to have not had any up-close-and-personal experiences with anything like this.
It’s one of those life moments I understand to be unimaginable and emotionally intangible until the day, God forbid, you finally face it yourself.
I think maybe all of life’s really difficult moments are like that.
When you write it down, I know that people familiar with that pain and horror get to feel a little less alone and heal a little bit more.
It’s the beautiful and accidental side effect of what we do. As always, you’re really awesome at it.
I know this happened several years ago. But I’m experiencing it today, right now in the present tense. Whatever the least-worthless version of saying “I’m so sorry for your loss, Gretchen.” is what I wish I knew how to say.
Thoughts and prayers for your brother and family, and for all of the families facing these unimaginable mountains to climb. (I saw Wendy F. comment up top. Obviously thinking about that family, too.)
Excellent writing, Gretchen.
Thank you Matt. Writing this definitely had me crying, it’s one of the memories I really shut out for a long time. But I almost always feel better when it’s done. It does feel healing for me. And you can never go wrong just saying you’re sorry for someone’s pain. I honestly find myself at a loss for words when I encounter someone who’s going through great loss. Which is crazy, considering what my family has been through. I know that any nice thought or gesture was very comforting and I don’t think anyone going through (or having gone through) loss really worries about which words are used, it’s the general feeling of support and concern that is felt. So thank you for that.
Excellent post. Thank you for sharing.
Thank you Tammy.
I am also the middle child with a younger brother and an older sister. I can’t bear the thought of something happening to either one of them. I’m so sorry for your loss, so grateful for your words. Grace and peace to you.
Thank you so much Aileen, for your sweet and beautiful sentiments.
I’m weeping . ❤️
saw your article on upworthy, and thought it might be ewings. my little brother was diagnosed a little over a year ago. not a club i ever wanted to be in. thank you for sharing your story <3
Ugh. I am so sorry. Every time I hear of another case of Ewings my heart breaks a little more. “Not a club I ever wanted to be in,” that’s what we say (my family.) I hope he’s doing ok. I hope you’re doing ok. <>
Hugs to you my friend. Grief is a beast that has torn my heart and mind apart at times. I appreciate your words.