You Face Sarcoma Cancer
The following insights, thoughts and feelings were shared by those people who attended the sixth RIS Patient Gathering in October 2009. We sincerely appreciate everyone who joined us and opened their hearts. Your voices still resonate, for us and for so many others. Thank you.
How Might You Feel?
Hopeful
I tried to stay positive because I wanted to do something, to take back some control in my life. We talked a
lot to all the nurses, and they told us, what they’ve seen, is that those people who get well – they believe. They have hope.
Determined
The word “race” is in cancer. And I am a runner. I was a runner. And you have to decide, how are you going to run your race? Are you going to run it with your head down? Or are you going to run it with your head up, looking at your kids?
My doctor told me, when I first received my cancer diagnosis: "think of yourself as a survivor".
I never once thought I would be one of the people who didn’t beat cancer. I always told myself I would survive.
Sad
The trouble is, after your first cancer is over, you just want to get back into your life. I was in college. When I found out the cancer was back, I just sat in my dorm room, and I cried.
But then I decided, there was no reason I would not make it.
Angry
Yeah, you can talk about faith and humor and all that. But you can also be really mad.
And I told my friend, it’s okay to say: “this sucks.” Have your temper tantrum, or whatever you need to do, then you can move on and move forward.
When I was in treatment, people were always telling me how important it was for me to stay positive.....
And I wanted to punch them.
Scared
I’m sure that you, like I do, fear recurrence . . .
When the cancer returns, it’s just so much scarier. It is extremely scary.
After my treatments were over, I kind of started unraveling. And I think a big part of it was, I would not admit to myself that I really wanted to be well. I believed so strongly that I had to be able to accept whatever the universe gave me, I would not allow myself to say: Yes, I want to live.
Happy!
I wrote thank you notes. I wrote them to my family, I wrote them to my doctors and nurses, I wrote them to my friends. And each time I did, I just felt so happy.
Invisible
I think the problem is that most people on chemotherapy don’t walk around with blood coming out of their
body someplace. So other people look at you and think: it must not be that bad, after all.
No one said anything to me when I lost all my hair and went completely bald in the space of about five weeks. There was not one single hair anywhere on my body, and no one said a thing about it. I wondered if I might have become invisible. But the good thing was, when my hair grew back, it was dark and curly at first, like it used to be when I was young.
Loved
This has brought all our friends much closer together. And we don’t worry about the things we used to talk about, either.
We’re just living in the moment, every day.
What Can You Do?
Name your blessings
I always started with the sky. And when you start with the sky, your list gets really long, very fast.
Engage with people
I have this friend, and he gets depressed. He won’t reach out to anyone. He doesn’t think he has anything to offer. And I love that guy. I’d do anything for him. So reach out to people. There are so many people who really love you. They’d do anything for you. Let them.
Take care of yourself
I had this important job, and I thought I was the only one who could do these things. But I needed to realize that other people could do this, to let go of some control.
Rest
Walk
Be Outside
Eat Well
Laugh
Read:
“Bald is Beautiful”
“Crazy Sexy Cancer Tips,” by Kris Carr
“The Human Side of Cancer,” by Jimmie Holland and Sheldon Lewis
“Pulse,” at www.reininsarcoma.org
The poem “What Cancer Can’t Take Away.” And in my darker moments, I said: “you wanna bet?!”
Embrace your life
I look back on it now, and I think, in those months, maybe we should have done more to enjoy our life. We’ve learned now, you should appreciate everything you have. Don’t take anything for granted.
I don’t really like my scars. But someone told me, scars are sexy . . .
Believe In Survival
Make Future Plans
Pray
Engage your faith
Cancer raises so many hard questions, especially when people are young. And it can be so scary, to ask those questions. Because what if you don’t like the answers?
I needed to find answers I could embrace right now, and tell my children, before it’s too late. And I landed where I always do, more with questions than with answers. But I don’t believe God sent me cancer, or takes children away from us. I think life happens, and people die because we’re all going to die. I believe God works through the human heart. To help change us, so we will be okay, spiritually, no matter what happens.
Share Poems
“Words Under the Words,” by Naomi Shihab Nye, and “New and Selected Poems, Volume 1,” by Mary Oliver.
I love these poems, for the same reason I love RIS so much. They are big enough to embrace the sorrow and the loss. This is big, right? This is really hard, what we face. But they also manage somehow to be so life-affirming and hopeful, too.
And When You’ve Lost Someone, You May
Question
When your child dies, you just ask God, “Why?”
Grieve
And when you lose someone, this can just completely destroy you. You can be just completely destroyed by this. But I don’t think this is what our child, or our spouse, or our loved ones, would wish for us.
Honor
You try to honor the person, to move beyond it. And this is what we do, to try to find some positive good to bring out of the experience.
Remember
I don’t like to talk in front of crowds, so I didn’t say this. But you can write this down: Keep talking about them. Their bodies may be gone, but their spirit isn’t. No one can take that away.
I Wonder, What Were Your Blessings . . . ?
I am blessed knowing that I have an angel that is so special to me.
My kids and my family. What would I do without them….
Family and friends. Cuddling with your family. Good food. Being healthy.
Continual love of family and friends.
A family accepting my cancer. That mine came when I was young.
My sister-in-law with sarcoma was grateful when her doctor admitted he’d never treated the sarcoma she had. Doctors don’t have to know everything. She appreciated his honestly.
My name is Tarlisha. In remission for seven years!
I became closer to God, and my family loved each other better.
When I knew my son would not survive, having years before he died to create wonderful memories!
I have been blessed by being able to be with my son during his journey through life, cancer and death. He will always be remembered. (Joey Burton)
These insights, thoughts and feelings were shared by those people who attended the sixth RIS Patient Gathering in October 2009. We sincerely appreciate everyone who joined us and opened their hearts. Your voices still resonate, for us and for so many others. Thank you.
