Welcome to The Band Back Together Project, a nonprofit group blog that aims to shine a light in the darkness. We try to reduce the stigma associated with mental illness, trauma, loss, grief, and tragedy through the power of the written words.
You’ll notice that stories are grouped by category and searchable from the sidebar box and along the top. Or, if you’d prefer, you may read them all. We even have an RSS Feed.
What’s more, we’d love to hear your stories, too. All of them. Everyone is welcome, nay encouraged to share their story with us. Everybody has a story, of course, and we’ve made sure that you’re in a safe place to share it. No story is too small, no problem too insignificant. These are your words, your problems, and they matter to you – and they matter to us, too.
All are, as always, welcome.
You’ll notice that most stories have several resource pages associated with them. We’re proud to share that we have over 500 resource pages to help you grow, learn, and heal. This is the library, after all, and all libraries have a glossy set of encyclopedias. I’m the head librarian, if we haven’t met before, and I make sure our library runs smoothly.
We welcome you with open arms and hope you’ll find our cozy little library comfortable. The lights are dim and soothing, which should help you relax a little. They’re the kind that make everyone look Soap Opera amazing, even if your face is tear-stained and puffy right now. It doesn’t matter if you’re wearing ancient, frayed sweatpants and a stained t-shirt, because in here, you look like a beautiful soap opera star. Besides, even if you look like you got run over with a steamroller, we’d love you anyway.
It really is like old library in here, isn’t it? The decor is so charming; all old polished mahogany wood and rich burgundies and tapestries and overstuffed chairs. The candlelit wall sconces make me feel like I’m in some old Agatha Christie novel or stepped back in time, don’t you agree?
I’m getting ahead of myself. I apologize. I do that a lot.
Let me formally introduce myself. My name is Becky and with my group of volunteers, we run this library. Your library – it really belongs to you, The Band. We don’t make any claims that the content is all ours and we are not liable for anything you say or do.
So here’s the How To Contribute To Band Back Together guide. It’s really worth a read, but the quick and dirty is this: don’t be a judgmental asshole, we’re not liable for your actions, don’t steal from us, and we’re moderating and editing everything – including comments – here. Why? Because this is a safe place for everyone.
We also have several special places to note in this library. We’ve got The Twitter wing at @bandback2gether, and our Facebook page is nestled in the back, by the gramophone.
By the stereo, there’s our Guidelines for Submissions and How To Contribute for those of you unfamiliar. If you look over there, you’ll see the Operational Committee. Cynthia is making drinks for us – Manhattan’s I believe. Or maybe just a cup of chamomile tea. It’s hard to tell in this light. If I squint, I see Christine organizing the encyclopedia collection while Anne puts something special on the stereo for you.
We all work together behind the scenes to keep this place running smoothly for you.
Kathy and Nathan have fixed the place up and will be down shortly to sit with us too. We can’t wait to hear your stories. We’re all here for each other. You may be wondering where you are. This is a place for you to share your stories, slay your dragons, celebrate your victories, and support those who need your help.
This is the place where we have gotten the Band Back Together. We can’t fix your new world order or make things go back to the way they were before, but we can remind you that we are none of us alone.
So please, take a look around. As one small blog in a sea of millions, we are small, but together, we can do amazing things, if we can Band Back Together.
We are all of us connected.
We are none of us alone.
*Due to the sensitive nature of the site, all comments and submissions are subject to moderation and/or editing.
Four years. Four years later. And still I struggle. Not every day. But enough.
The reminders that won’t let me forget.
Seeing my daughter doing the things my son should have been doing four years ago. Climbing, running, not needing to hold the walls to walk down the hallway as he did at the end.
The surgical scar on the back of my son’s neck echoed in the scar on my soul.
The checkups, though now yearly, renew my fears… what if…
When does this end? When do I get closure?
When it’s been five years since the tumor was successfully removed? When my son gets to go to prom like the diagnosing neurologist essentially promised us? Or goes to college? Gets his first job? Gets married? Has kids of his own?
Do I get closure? Or is closure bullshit?
Yes, it does get easier. Yes, I’ve gone on with my life. But some days (most days?) I’m not convinced it’ll ever really be over, that the door on this chapter of my life will ever really close. Rather I feel that this chapter is just beginning and it’s a long one.
I try to console myself, thinking it’s okay to feel this way, that it never ends. I can be okay with that. Right?
And yet… And so… this is where I am left… my son is alive and well. Why can’t I let go of the past?
Twenty years ago today, I was a little girl who had just been on her first major road trip.
My uncles, some family friends, my sister, and I had driven the 20+ hours from Phoenix to Houston. I had no idea what to expect. I was so conflicted because in my mind, Houston, Texas looked like a city from an old western movie. Yet I knew Mom was there at MD Anderson Cancer Center, which is the best cancer treatment center in the world. I had such a hard time picturing this big fancy hospital in the middle of a town made of wood buildings and dirt roads with horses.
Turns out Houston was a lot like Phoenix only GREEN. I’d never seen so many green plants and rainstorms in my young life. And MD Anderson was mind-numbingly huge and complex.
And my mother, well she was a pumpkin.
That was my first thought anyway. When she had left Phoenix she’d had SOME hair left. Now she was completely bald and the medicines they’d given her had made her swell up a fair bit and turn orange. Clearly, my mother was a pumpkin.
She was in an isolation room. I could see her through double-paned glass and talk to her via intercom. I couldn’t hug her or touch her. No one could. The doctors administered drugs to her through long plastic gloves built into the opposite wall and once a week a person in a bubble suit could come through the air lock to clean her room. Everything that came in had to be sterilized.
After 3 days of radiation treatments, where she received the same amount of radiation that you would have at Hiroshima when the bomb went off, Mom had no immune system left. The littlest bug could kill her in a few hours.
I remember watching the day of the transplant. We were all gathered around the window. Momma was SO so excited. She held the catheter line up for us to see as they pushed in 3 BIG fat syringes of bone marrow in through the tubes that came through the wall. She gave us a big cheesy grin and a thumbs up!
Afterwards, we went to check on my Uncle Mike (one of my mother’s younger brothers) who was her bone marrow donor. He had 6 little round needle holes in his butt. 3 of them on each cheek. He told Mom that now he can really say that she was a pain in the ass. (In fact until Mikey passed away 2 years ago, Momma would call him every year and thank him for saving her life. And every year he would say “I love ya sis. You’re welcome but you’re still a pain in the ass” )
That was 20 years ago.
I still bawl like a baby every time I really think about it. I have no words to express how amazingly grateful I am to God, to science, to the doctors and nurses and to my Mother for being a fighter and going to hell and back so that I could grow up with my Mommy. I would not be a live today if it wasn’t for her.
In so many ways, I owe who I am to my amazing mother. You couldn’t ask for a more loving, accepting, caring and compassionate person. Don’t get me wrong – she’ll kick your butt up between your ears if you really need it, but only because she loves you. I think she has done a SUPERB job of balancing being a mother and being a friend, and that’s not an easy line to walk.
For better or for worse, hers is the voice in my head. I found that out when I went to college. She’s the one I hear encouraging me, chastising me, reminding me and helping me.
She hasn’t always been perfect but I can say this: Whenever it has been pointed out to her that something she has said or done was not right or hurtful, she never, EVER did it again.
As a kid, shortly after the transplant, I presented a picture to her transplant physician, Dr. Anderson (who just happens to share a last name with the hospital). It said in big crayon letters “Thank you for saving my Mommy’s life”.
I want to say it again. Preferably through a mega phone from the top of a tall building, on the 6 o’clock news and on the front page of every paper in the world, but I’ll do it here:
Thank you to every one involved in making it happen. Thank so much for saving my Mommy.
Twenty years, baby. Here’s to 20 more and many, many more after that!
I think this post is going to be one of many. There are things I am remembering that I haven’t thought about for years. I read the intro to Band Back Together and I felt my chest get tight and tears start to form. Just the premise – a place to share, fully, completely and be safe. Maybe it could help somebody else. Maybe it will only help me. But either way I think some of these demons aren’t as dead as I thought so we’re going to start try to pull them all kicking and screaming into the sunlight. I’ll submit them at the Band but they’ll all be posted here for sure.
Some background before we begin- My Mother has had cancer 3 times. Starting with Leukemia when I was 8, Melanoma when I was 15 and Mucal Epidermoid Carcinoma, stage 2, when I was 20. My Father also had Lung Cancer (Non-small cell carcinoma, stage 1) when I was 22.
These are my stories.
It was spring. I was 8 years old. Mom found a couple lumps on her neck but we’d been digging in the yard the day before at the new house so she dismissed them as some sort of bug bites….
My parent’s didn’t want to uproot me this close to the end of the school year and so I would get driven to school every morning and then I would walk back to Grandma’s house with my cousin Josh and hang out there until Mom or Dad could pick me up after work.
One day Dad came to get me, I can’t even remember if it was early or late now but I remember it was out of the normal time he usually came. We had to go to the hospital. Momma had “collapsed” at work.
What I found out later was that what actually happened was that my Mom had been walking down the hall way at work (she is an RN) talking to some coworkers and had passed out. She’d shrugged it off as hypoglycemia getting the better of her. But then a few hours later while bending over a patient it happened again. This time they insisted on taking her down to the ER for tests.
We sat for 3 hours waiting on a single blood test. Turns out they tested it on 3 different machines and the results were so off they decided the machines must be broken so they called in a specialist to count it by hand.
I don’t remember what the exact white cell count was. But I remember it was SO massively off what it should have been. Lots of extra zeros. I knew that was bad but at 8 years old I didn’t know much else.
The next day, my Aunt Lois came to stay with us. I really liked Lois, even if I wasn’t so fond of her cooking at the time (she’s my organic aunt). Mom and Dad were just going to go get one test done and see a doctor and then they’d be home.
Momma never came home to that house. In fact she didn’t come home again for nearly a year….
It was me, my little sister, Beth and my cousin Kaydee sitting in the living room floor watching Bambi of all the horribly perverse things when the call came. I remember Lois looking pale and repeating like she couldn’t believe it: “She’s got cancer??”
All I knew about cancer at that time was the week before I’d watched one of those stupid hallmark specials designed to make you bawl your frigging eyes out; the lady had died of cancer because she’d refused treatment so she could deliver a healthy baby.
I turned back to look at the TV in time to catch Bambi wandering alone in the snow asking “Mother? Mother?”
I swear to God I am NOT making that up. I jumped up and shut that TV off as fast as I was capable of. I couldn’t watch Bambi with out FREAKING OUT for 10 years afterward…. I still don’t like that stupid film….
Lois explained that Mommy wasn’t coming home that night. They were admitting her to the hospital straight away to start treatment. My Mother had Acute Lymphoblastic Leukemia (ALL). They even initially misdiagnosed her with another form of Leukemia, maybe it was wishful thinking b/c ALL in adults is bad. Like, usually they have enough time to diagnose you, admit you and then you die, levels of bad. Its more commonly found in children where it takes a much less aggressive course than it does in adults.
In a lot of ways, I look back now and realize my childhood ended in that living room that day. I have a lot more to share. And I will but I can’t right now. Maybe tomorrow….
I am the child of a cancer survivor and this is my story.
My daughter just got home from school and asked me what was wrong. I told her “I don’t feel good” but I can’t really pin down what’s wrong or why I don’t feel good.
Ever since this morning, I’ve been so out of it. Just doing a sink full of dishes seemed like it took a huge effort. I managed to haul the laundry to the laundromat. I plugged earplugs into my Blackberry, which I shoved into my pocket. I wasn’t listening to anything, but I didn’t want anyone to look at me, let alone talk to me.
I feel like this cloud is surrounding me. I can see glimpses of the sun at times, but it doesn’t last. Or it’s like I’m treading water. I’m doing what it takes to survive, but not much more.
The only thing that feels good is if I am alone, wrapped in a blanket or in bed. I go through the motions for my husband and daughter. Mostly because I know they won’t understand. And how do I explain how I feel when I don’t even know myself?
Maybe it’s the depression… maybe I need a different medication. Maybe it’s hormones. My period is due any day now, and I already know my hormones are all kinds of screwed up.
I feel alone when I feel like this. I want to talk to someone, but I don’t know who will understand. Who will “get it”. Who won’t just think it’s all in my head?
In the meantime, I try to move forward. I try to keep going through the motions.
nugget daddy and her grandmamie brought nugget to my hospital room to get ready for trick-or-treating. she was, of course, beyond adorable in her tinker bell dress and wings, sparkly green tinker bell shoes, tinker bell wand, and ballet pink tights. i pulled her tiny tresses up into the best tink-like puff i could manage, fluffed it up with plenty of hairspray and added a clip with tiny white flowers. she politely shrieked, “dada! dada!” and beamed with pride as she was showered in nugget daddy’s hair product. what, you didn’t think it was mine, did you?
then we selected where she wanted her green star stamps placed and where best the pink star stamps were suited for. earlier, i ‘d done a sample patch of each color on each of my cheeks so she could see how they both looked.
then we applied a very liberal dusting of pixie dust. i should have gotten her some “pixie dust” glitter of her own to keep in her “berry bucket” for dousing unsuspecting passers-by. ah well, there’s always next year!
we made a few rounds though the halls to the different nurses’ stations. nugget was heartbreakingly cute and insisted on holding my hand, always unsure of how to navigate around all the wires attached to her mama. i told her it was almost time to go to the mall for more trick-or-treating and that her grandmamie would be getting her the tinker bell movie while they were there.
we said our goodbyes and i swear, i just couldn’t get enough hugs or kisses from my sweet baby girl. i watched as they made their way down the hall, all the while nugget was cheerfully waving goodbye, happy as a clam, all pixied-up and ready for more candy collecting.
i stepped back into my room just as the tears started rolling down my face. i tried to sob silently for my own selfish sadness.
i hoped she was having the time of her life, holding out her fat little felt flower bag – surely that’s what fairies collect halloween candy in – and squealing with delight with the acquisition of each new piece of candy. she had oh-so-politely signed “thank you” for each treat she’d collected from the nurses and i hoped that trend was continuing at the mall. i’m so very proud of my little tinklet.
i hope i can get out of here this weekend in time for the good post-pumpkin day costume sales at the disney store and old navy. otherwise, i might have to send someone armed with a fully charged cell phone and a whole lot of patience on my behalf!
