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.
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!
I don’t know where to start. I have had dysthymia for as long as I can remember. My new therapist says it is like a living a half-life. I guess it is. This year, it slipped into something worse. This year has been one of the worst years of my life and I have had some pretty bad years. I had a relationship end, I started a bout of major depression that left me 70 pounds heavier, I had two surgeries, I am in a job that I hate, and on November 21st, I lost a dear friend to cancer. I can’t stop thinking that I wished it had been me. I feel trapped by bad choices. I have nothing left to give anyone anymore. I feel dead inside, but I hide it well. No one really knows how many times I came close to killing myself this year. I grew up with an alcoholic, I grew up in a violent household where I never felt safe. I was molested several times by several men and one female relative.
I feel trapped in this fatsuit. I feel like the best years of my life are behind me. I feel damaged and broken. I am trying to get help. The mental health resources where I live are spread pretty thin. I get to see a therapist once a month, if I am lucky, and I see a doctor for meds for ten mins a month. He switched me some of my medications because of the weight gain. I have tried about ten different anti-depressants and all of them had some kind of unpleasant side effect. I keep hoping I will find one that actually works. I also take an anxiety medication. I take it to control the panic attacks I get when I am out in public. I take it to quiet the loop of negative thoughts I have going through my head everyday.
This is my first post. I come here and I know that I am not alone. I thank the brave people who share their stories here.
Have you ever been swimming in the ocean and wondered what was lurking underneath you…eying your body…sizing you up to see if you would make a tasty meal? That’s what I call the breast cancer “shark attack syndrome.”
I liken the physical and psychological impact of a double mastectomy to a shark attack. It happens quickly and violently. In a matter of minutes you are struck hard and parts of your body are carried away into a vast ocean by a predator much bigger than you. It isn’t personal. The attack is random. You are left alive but amputated–stunned and with a life long fear of the water.
People who know about my diagnosis gawked at my chest like an accident scene on the freeway. Family, friends…they can’t help themselves from looking. I chose not to have reconstruction due to the lengthy recovery…an infant and a toddler don’t lend themselves to extensive plastic surgery. My daughter was 8 months old and my son was 3 years when I had the surgery, not exactly the age where I could be out of commission.
I don’t wear the prosthetics I bought…they constantly remind me I am amputated, and the first time I took yoga one of them fell out! My beloved yoga teacher said, “Just take them out, honey.” I never looked back.
Rough Waters
The journey through a breast cancer diagnosis with two small children was so very hard. I searched for the words to tell my son…
”The Doctor found a lump in mommy’s breast that isn’t good for her body and he has to take it out.”
Thanks to my son’s school and my amazing husband, we got him through it…but he STILL talks about it and recently asked, “Mommy, why don’t you have boobies?” At that point I realized my beautiful daughter would grow up never knowing her mother’s body to look “normal.” She only knows the scars. That is the day my heart broke forever. As if depression didn’t make me feel inadequate enough, now I felt like a carnie act. Come on down and meet the lady who was attacked by sharks!
I will never truly recover from knowing what I look like and what I represent to my children. But I am here to be their mom and truly thankful. Thank god I had it checked. The mammogram showed no abnormalities! If I had just had the mammogram I would have faced a diagnosis of invasive cancer and perhaps required chemotherapy or radiation. As of now, they tell me I am “cured.”
And I found it myself.
Not a minute in the day goes by that I don’t worry that it will return and take me from my children. Every woman who has had breast cancer knows exactly what I’m talking about. Every cold, every headache, every stiff muscle, still scares me into thinking I am still out there in that ocean—defenseless to another shark attack. What part of my body will they take next time?
I saw my mother lose her breast early in life. The same month I was diagnosed, she was diagnosed with Stage IV colo-rectal cancer. I watched the sharks circle her for six years, taking feet of colon, and eventually her life.
But it isn’t a pity party. I am glad I got cancer. It was a hell of a lot easier to deal with than postpartum depression, than life-long depression, than the cancer that is depression. And it got me immediately in touch with impermanence, and subsequently, my spiritual practice.
If I were thrown back into the dark ocean again and a recurrence reared it’s ugly head, I have my faith to thank for curing me of my fear of sharks.
