Since March 2019, my loving friends, you’ve prayed, danced, fallen to your knees, helped us, looked for help, cooked meals, picked up meds or groceries, bought shirts, made bracelets, hugged, cried. Laughed. Sent positive vibes. Kept us your thoughts & hearts. We are so grateful,
You’ve sorted shirts, made posters, given rides, offered beds. You’ve arranged cow, horse, and dog petting.
You’ve helped my son by being there, taking him places, or letting him hang out. I am forever grateful.
You’ve answered the late night calls.
Deciphered my illegible texts.
You’ve heard the screams, sobs, panic, and silence. You’ve hit every emoji Facebook has to offer. You’ve followed along, shared posts, sent links, looked for help, given directions, suggestions.
You’ve donated your hard earned money, time, friendship and love.
THANK YOU is not big enough.
GRATEFUL is am understatement.
We simply could not do this without support of EACH any EVERY ONE of you.
Through the multiple hospitalizations, close calls, bad news, car accidents, weekly travel to and from Houston Texas so my beautiful daughter could participate in a trial to save everyone after her diagnosed with TNBC.
Last week when we arrived for our weekly chemo on Wednesday, they told us we had to stay. A lot of tests everyday, all day.
Today we “OFFICIALLY” received the news: Dr Twong informed us that Samantha has had a reduction in the tumor they have been tracking. The tumor that grew on A&C chemo [ the red devil]. The invasive, aggressive, metaplastic cancer invading her body has reduced in size.
There could not be better news or better timing.
Yes we still have a very long road ahead, but now there is a a clearly defined road. A brightly lit road that she is paving for everyone after her.
We have three new types of doctors to meet and consult with: Surgical, Radiation, and Plastics. We are so grateful.
This Wednesday she will receive her chemo in Texas and by Thursday we’ll be making our way back to Mississippi. Next Tuesday we’ll return to Texas.
Then we won’t return until a couple days before surgery – probably the first part of October to complete pre-op testing and surgery.
That’s IF all goes well.
In mid to late November, she will start daily radiation at home, on the Mississippi gulf coast.
So my loving friends, you wonderful people. No matter what. Every single second was worth it and we could not have done it without you.
Stay with us.
There’s a lot of, “if this goes this way” type tests and procedures. Please keep doing exactly what you’ve been doing; we still desperately need you. I wanted you to know that you’ve made a major difference in our lives and the lives of every family who hears the diagnosis of Triple Negative Metastatic Breast Cancer.
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.
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.
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.
Imagine being 21 and attending one of the most well-known public universities in the United States. You are studying something you love, having a blast with your girlfriends, and always on the lookout for a potential suitor. You’ve lost some weight and feel really great about yourself. You’re four months away from graduating (a semester early!) and starting your life.
Your future is at your fingertips.
And then you get slapped with your mortality and it feels like your world is crashing around you.
You know what? Sometimes the chemo, the vomiting, passing out, and the ever-present thoughts of death wasn’t the worst part.
Sometimes, the worst part was sitting on your parents couch at twenty-one, wishing you were going out to that amazing party with all of your friends. Or watching your hair fall out in chunks in the shower. Your beautiful, personality-defining red hair just washing away down the drain. Or realizing part of your soul died when you asked your dad to shave your head because you just couldn’t watch the slow process of it falling out any longer.
Sometimes the worst part was looking at yourself in the mirror and just watching the tears stream down your face as you realized that this is your new reality. You are a twenty-one year old woman and you are bald.
Maybe the worst part was the steroids. Good God those things are evil. In a matter of weeks you transformed from that trim, vibrant woman that you were so proud of, into a bloated, chemotherapy-ridden sick person. You have that look of cancer and it crushes you.
And then there were those few moments where you felt good. You put on nice clothes, brush out your fabulous black wig and get ready for a night of normalcy. The drinks start to kick in, you start talking to a handsome guy. One thing leads to another, he leans in to kiss you and goes to put his hand on the back of your head…. and you freeze. Because you know the second he touches you he’s going to feel your wig. Your cover is blown, you are not one of the normal girls. And the last time I checked, most guys weren’t looking for a date whose chemotherapy schedule would have to be worked around.
So then you just stop going out. You realize this is temporary and it may not be fair, but it was the hand you were dealt.
You live with it.
You stop sulking.
Hair grows back.
Weight can be lost.
Love is still out there to be found.
The bars aren’t going anywhere and you can graduate next semester.
They caught it early.
You are going to be okay.
Other people have it SO much worse.
You will still get that whole wonderful life that you always dreamed about.
I’m on an airplane, heading home from my recent vacation with my wife and most of her side of the family and writing this entry on the notepad on my iPhone. That is the dedication I have for BAND BACK TOGETHER!
How did this entry come to happen? Well, I blame Aunt Becky. Why didn’t I have a link for Aunt Becky?! Umm, if you are reading this chances are that you know her. If not, well…I got nothing. I follow that crazy (crazy AWESOME) lady on Twitter and love reading her blogs. Mostly cause she says fuck a lot and you don’t hear women talk that way. Come to think of it, she might be a dude. Eh, I would still follow her…or him.
She tweeted how she wanted to make a shirt that said “CANCER IS BULLSHIT” and I told her I would help with the design. This led to a stream of DM’s of why I wanted to help and what it meant to me. So I thought, what else is there to do on an airplane ride? Well, besides watching “Breaking Bad” that is. Here it goes. This entry is going to be a bit different from how I normally write so please don’t judge! This is serious, we’re talking about my nuts here!
I was a month away from turning 31 and 2 weeks away from my first anniversary with my wife. It was Halloween and we were at a party at our friend Nick and Lauren’s house. I had probably 4 beers and we were home in bed by midnight. Everything was fine. That was Halloween.
November 1st was a different story.
I woke feeling like crap. Well, I actually felt like I had to take a big crap. Gross, but that’s the closest thing I can equate it too. As the day went on, I started to feel worse. I decided to take a shower because for some reason that always helps me feel better. I like to sit down in the shower, that’s just how I roll. Well, when I did that I felt a sharp pain…in my nuts. Actually it was just my left nut if we want to get technical about this. I decided to give myself a self-examination. Right nut, smooth and pliable just the way it should be. It seemed to be normal size, from what I remembered. Okay, left nut…fuck. The thing was 4 times the size of the other and hurt like hell to even squeeze ever so slightly. I called my wife to look at them. She saw them and how there was a noticeable size difference and we were off to the hospital.
After waiting for 2 hours in terrible pain due to all the assholes that ran to the ER, convinced they had H1N1, I finally got see the doctor. He poked, prodded and jostled my testes. Then, he ordered an ultrasound.
You know what’s awkward? Having your nuts scanned by a female nurse while your wife is in the room. Yup, not cool. When I returned to my room in the ER, I was met by my doctor who had already scheduled me an 8 AM appointment with another doctor who would be talking about the surgery and my cancer.
Wait…WHAT THE FUCK!?
Yeah, it was laid that smoothly on me. My wife and I walked to the car (it was 10 o’clock by now) and I made a phone call to my mom. I told her I was okay, but that I there was something that I needed to talk to her about but I needed to go home and sleep and that I would talk to her when I knew more. She cried a bit, but respected my space.
Next day, we met with my Urologist. He had red hair and was kinda weird. That’s all that I can tell you about him. He is just kinda weird. Whatever, he showed me my scans and told me my options. I knew surgery was necessary so we were all for that.
They would be removing my left nut the next morning at 8AM. My tumor was directly in the middle which was good because the doctor feels like that stopped any spreading of any kind. He was very sure of this.
However, I was still going to go through Chemo or Radiation therapy.
I had my nut removed and then had two weeks off. It was nice to have the time off but at the recovery sucked. They had to give me a hernia, take the nut out and then seal me back up. I couldn’t lift, sit up or get out of bed for about two weeks without being in pain or uncomfortable.
I was lucky that I didn’t have to go through massive sessions of chemotherapy. I chose chemo because one doctor said for the type of cancer I had and where it was that it was the best treatment and he stood by that. Also, I chose it because I thought the radiation oncologist was kind of a douche.
Chemo wasn’t so bad. Yeah, I did have to sit in a chair and people gave me the look of death when I walked in for treatment. Old people seem to think that no one young should have cancer and when they saw me they thought the worst, so they would give me this look. I hated that part of being in the clinic.
I finished my treatments and now I do blood tests every three months and scans and blood every 6 months for 3 years.
What I hate most about the scans is that every time I have one done, for about a week I am on pins and needles waiting to hear the news. That time is the worst.
It happened during this economic struggle that everyone is going through. We were hit hard and our savings was completely destroyed. We are a young couple that is trying to save for a house and get started, but life decided that we would have to grow up really quickly. You can always earn more money, right?
We want to have kids and now it seems my number of fellas down there has been cut in half. We were taken from being this happy couple that is young and didn’t have a care in the world, to a couple that is now having to think about freezing sperm just in case! My wife was my rock during this whole thing. She was there by my side and never left it. I even had a medal made for her that says “Best Wife Ever” so that title is now officially taken and no one else can have it. My wife has that shit LOCKED DOWN!
Cancer is BULLSHIT! I definitely agree with that.
However, I have learned a few things since it happened. I now know that I am not invincible and that things can happen. I knew that when I broke an arm or something but that’s different. When you are told you have something life-threatening, it really makes you stop and look at life. I may be a “single jingle” (I want a shirt that says that) down there now but I am still alive and that’s what matters.
There are times that I lose it and cry. Shit, it happens to us all. I could be fine one day and think about it and how if I hadn’t caught it I could have died and how I would leave my wife all alone and it makes me sad. But, I am still here. I am alive and kicking and not going to let my cancer run my life.