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.
Addiction isn’t called a “family disease for nothing.” The family of an addict is just as impacted as the addict.
This is her story of her son’s addiction:
My child has become an addict and loving my child is so very hard. I’m trying to find my happy as I learn to deal with his addiction.
With the overload of health issues around here, along with the common “life stuff,” I willing took a break from blogging after the last attacks from trolls; trolls who don’t know me, know my child, know my life, know my situation, and will never understand my life or my thoughts.
Simply: I took a break because I wasn’t strong enough to keep going,
Three blogs, five days a week, and two little freelance writing gigs with groups have kept me tied to the computer dumping out my odd take on humor, insane fake advice, and occasional a vaguely serious topic.
I have decided I will blog, on my blog, and the trolls will not, cannot affect me. I won’t allow them that kind of power. I have to share this story because as odd or awful as this is, I can’t believe I am the only one. Sometimes knowing you aren’t alone, can make a differences on your life. It has in mine, just like everyone here at Band Back Together.
I call it “living” but it’s really just existing – when I can muster the strength to push the elephant in the room to the back of my mind. This horrible addiction elephant.
When someone you love makes horrible choices, you can still love your addict child, but you also have to make a choice.
I made a choice to love from a distance to allow my son to deal with his addiction on his own time, allow that person to do things at their will, wherever they wanted. The condition was: I would not support that person, their activities: not emotionally and definitely not financially.
Of course that comes with a higher emotional consequence for me, a soul-eating, mind -boggling, hellish existence.
Torn when the phone doesn’t ring, furious, emotional and torn when it does. There is no happy medium, is no mutual enjoyment of life, it’s an inner ring of hell.
It’s odd how the human brain learns to process things so completely outrageous and unacceptable if they happen often enough; the brain removes logic to save the heart. The brain knows if one more little piece of your soul falls to the floor, you will collapse and finally fade away.
You can’t fix it, they don’t want to be fixed, no matter how absolutely insane and ludicrous the situation, you cannot even point out how completely illogical the situation is, let alone offer solutions. There are no less than 683 million reasons why all of your ideas are completely stupid.
You learn to focus not on the highs, not on the lows. Not the shocking news, but only that you love that person, your child, who just happens to be an addict.
You make sure whatever you say won’t offend them, or their choices, and you make double damn sure that person knows you love them, you love them deeply, you love them completely, you love them from your soul. You only want the best for them, safety for them, happiness for them.
No one really has the same idea of happiness.
it took me 43 years to realize that.
Another thing I learned; just because it’s ” the normal” thing that you’d make anyone happy, happy and delighted and feeling so very lucky, this can seem like hell on earth to someone with a different view of happy. So who am I to attempt to enforce my idea of happy on anyone? Simply put, I am no one. I am just a daughter, a wife, a sister, a mother, an aunt, a friend.
I am made up as we all our of a unique cocktail of our childhoods, our teachers, our elders, our peers, our life lessons, co-workers, books, and shows we have seen. Just a big casserole of a human being trying to find “happy.” When I achieved happiness, I assumed it would be wonderful – more than wonderful – and that, in turn, everyone else would become happy. Everyone would see how hard work brings happy, how loving each other brings happy, how walking the right road, singing your own song, and smiling would obviously land you in happiness.
The past 20 years, I tried to shove people into the happy, I tried to drag them into happy, push them in, beg them, lure them, slide shows of happy, handmade cards, long emails, song dedications, heartfelt talks, and hugs, I could surely get them to happy. Once they saw happy they would be like “duh, I want to be happy too!”
I was wrong. Their happy was so different than mine so I had to accept they would not be in my happy with me. Maybe they were taking a different route, and we would meet up in happy. Maybe their happy just meant more pit stops, more experiences, different criteria, maybe their happy would never lead to the same location as my happy. What would I do then?
Their happy could be really good for them, so I will work on being happy for their happy.
Little crumbles of your heart fall as your soul tears.
In the end, all you really want is for them to be happy. You convince yourself not to be such as narrow-minded selfish ass who demands everyone’s happiness is within arms reach of your happiness. We are not all alike, and really, what a boring world that would be. Keep telling yourself this as it makes it easier to persevere your heart, mind, and soul. Besides, it makes them happy that you are happy for them. It’s painful but it’s good for them and for the relationship.
Then the call comes, not a happy call, you are prepared because you know when this disease spins ’round, the calls come in two forms and two forms ONLY.
One, the world’s best thing ever, everything is amazing.
The next call, though, could be in a week, a month, a day, or within several minutes: the world is ending, there is no hope, no escape.
There’s not a single thing you can do to make it better. So you listen, try not to cry, remembering to love, offer helpful solutions, offer to make arrangements or calls, you do what you can and it’s usually for nothing. It rarely works out, but you make damn sure they know you love them so much you can’t breathe when they are in pain.
The calls – you see the caller ID – it’s a number from a state that you don’t know, but you do know who is on the other end, you never know the type of call, only that it’s from them. So you take deep breaths and you prepare to play the roulette game of their life. What kind of call you don’t know it could be: an incredibly fantastic words of grandeur.
Or the call can be gut-wrenching, heart-breaking, sobbing pleads for help.
You don’t know, because you can’t know but you answer the phone, inviting the roller-coaster of love and hate and pain into your world.
Nothing surprises you now.
As long as it’s their voice on the end, you are prepared, it’s now become common practice. You’ve learned to stop yelling, begging, urging, and learned to focus on conveying the fact that you love the elephant in the room. You love that elephant when your eyes open in the morning, and you love that elephant when your eyes close at night without a tear running down your cheek. No one sees your tear.
No one hears your cry and no one, no one can understand why this elephant is needed, deeply; it has become comforting.
Then as you are in your happiness on the back porch wind blowing you sit with your little family, cross-legged looking at your happiness, eating sandwiches, and thinking how peaceful and loving and happy this all is.
The phone rings.
The addiction elephant steps outside. The elephant sits on your chest, takes your breath, and overcomes you. Sometimes, when that elephant climbs on you, you compartmentalize you soul, your heart, and your brain as this allows you to attempt to speak in a sane, calm, tone, using gentle words, no blame, just love.
The call ends, with mutual ” I love you’s.”
The happiness is now gone for them as they are faced with a very adult matter that can’t be “worked away.”
You don’t remember the rest of the happy picnic: the people in your happiness with you do not have a conversation about it. You move on as you do after every call. But something is wrong, very wrong
You can’t tell anyone, yet you don’t cry, you don’t sob, you don’t fall to the floor, you don’t steal a car to get to the addiction elephant to hold them.
What the hell is wrong with you?
Why are you not responding like a human?
Why aren’t you happy?
Why not like the other times?
You haven’t fallen apart yet.
Will you fall apart?
Will this change your ability to move forward?
You know that If this person comes back, can you handle it?
Can the happy team handle it? What will be the cost of the elephant if you don’t?
What will be the cost of happy if you do?
I know the other shoe will fall, there’s just no way to process this without dying more inside. Maybe I am out of a soul, a heart, tears. Maybe I have been cried out, maybe I am stronger, maybe my brain is trying to protect me.
I am very much not okay, mostly because I feel okay, there is no way that I should feel okay.
Why am I not shaking, sitting in the shower crying, sobbing, and vomiting like I’ve done before when the bad news comes?
I’m not even shaking.
The shoe will drop, I hope, I beg, I have the strength, the knowledge, the wisdom, the compassion, the ability, the life experience, balanced with the brain, the heart and soul, to take this journey.
To share my happy, to understand their happy, to make a new happy, but most of all, to convey they undying, deepest of love and the basic humanity to make their happy the best happy I can.
Please find your happy; let everyone you know how much you love them – no matter what what makes them happy.
Every time I see the latest affront to human decency perpetrated by this administration and its dark legions of slavish devotees, I make a point of doing something kind for someone else. I practice kindness.
Anonymously, if possible.
Practicing kindness doesn’t have to be a big thing, or involve money, or even a lot of time. The point is not self-aggrandizement or warm fuzzies; the point is to pump an antidote and practice kindness to combat a pathological campaign of destruction, bigotry, and vile greed back into the body of this nation.
The point of practicing kindness is to actively resist an agenda that others women and minorities, strips hungry children of food, destroys families, and trades respect and decency for jingoistic greed and willful ignorance about our shared existence on this precious earth.
My kindness suggestions are always simple, but they are also effective:
Feed someone who’s hungry.
Help someone who’s struggling with work, their kids, with transportation.
Support artists, writers, and other creatives who are generating the beauty we need to combat fascist exploitation and dehumanization.
Refuse to leave unchallenged the propaganda and bigoted views you encounter on the daily, especially if they’re being used to actively attack, demean, or insult someone outside of the oligarchy’s CisHet Anglo Ubermensch paradigm.
Remember that you have far more in common with every day citizens of all races, sexual orientations, genders, and creeds than you will EVER have with a cadre of planet-crushing exploiters and fear-mongers eager to add more filthy lucre to the golden beds around which they coil like the dragons of old.
I used to agonize over who could possibly save us from this slide into brutish dystopian horror.
But I have come to realize that the light we need to banish the darkness comes from within each of us, and it is only by combining that light that we can combat the torrential flow of poison and bile.
So yes, absolutely call your elected officials. Definitely vote. Volunteer your time and resources to causes you care about. March, protest, resist.
But remember, too, the smallest acts; those tiny daily affirmations of our shared humanity, kindling a light to push back the dark.
I sometimes wonder if you know how much we love being a part of this fabulous Band you’ve created, and how much of that love is rooted in our love for you. You have a way of letting those around you know that you truly care, and in this often too cold and callous world, that can mean everything.
Those of us who work with you on the Band Back Together Project are reminded daily of your dedication to the happiness and well being of those around you.
Those of us who have followed you for years, through Mommy Wants Vodka and the formation and falter and rebirth of Band Back Together, until today, understand that living our best lives takes a lot of work, a heavy hit of faith in ourselves and an ever-ready sense of humor, but we can get there.
Those of us in The Band, Band Mates in every sense, feel the warmth and love of this safe and gentle place you’ve created for us. We value the kindness and empathy we find here, and we envelope ourselves in it.
And those of us who are lucky enough to count you as a friend are amazed that such a kind, smart, sensitive and connected woman doesn’t see how much of an impact she has made on the world around her. And those friends want, this friend wants, nothing more than to see the flicker in your eye the moment you realize how dear, how valuable, and how loved you are.
So, our Aunt Becky, Happy Aunt Becky Day! We love you to the moon and back. You are our Dose of Happy.
There is no spectacle—no empty, gaudy, tin-hammered mockery bedazzled with tanks and star-spangled jingoism—that can bring honor to the honorless. There is no parade that can instill leadership, or merit, or ethical, rational thought.
There is no amount of desperate, flop-sweat vamping that can erase the knowledge of crimes perpetrated against the American people, or the seemingly bottomless well of sexual harassment and bigotry, or the concentration camps that stand in brutal, ironic contrast to the very notion of Liberty and Justice for All.
There is no shimmering fireworks display that can outshine the glaring lack of empathy toward the rights of women and minorities in our sociopolitical landscape. What sparkler can hope to compete with the blazing trash fire of constricting rights, expanding violence, and vanishing erudition?
Two hundred and forty-three years after this country was founded in pursuit of lofty ideals supported on the backs of the oppressed and displaced and exploited, we find ourselves with much to consider and little to celebrate.
If we would seek Independence in the manner of our forefathers and foremothers, then I would invite you today to seek independence from greed. From capitalist exploitation. From broken, hateful policies and standards that minimize human dignity while seeking to maximize profits for the inhumane. I invite you to declare your independence from the vision of the United States as either the world’s policeman or its enterprising overlord.
I invite you to declare your independence from “fuck you, I’ve got mine” and embrace mutually beneficial collective endeavor as a virtue. Participate in your political process, by all means, but break away from the idea that these grasping, puling monsters are meant to be our masters. Say no to bigotry. Punch a Nazi in the face, because when you stand up with capital-E EVIL, a face punch is the least you deserve.
Say no to equivocation and good-little-cogism. When you see the jackboot descending onto the neck of someone who’s not your color or sex or gender, don’t sigh in relief that it’s not you and look away. Use your voice and your hands and your heart—your raw, wounded, beaten-but-not-dead-goddamnit heart—to lift them up and cast the boot into the sea.
Look away from the scampering puppet show, there in the dark and the muck, where tanks roll like pilfered dollars and anyone too queer, too brown, too female, too empathetic is simply fodder for the beastly machine that feeds and feeds and feeds.
Break away, and look to the light of a tomorrow worth living.
Fortunately, my daughter Sam, who has ben recently diagnosed with Triple Negative Breast Cancer, has medical insurance through her employer.
As long as she can keep her job during all of her treatment, it covers a fair amount of some of her costs. At least after her catastrophic cap was met for the year (didn’t take too long to reach it).
We all consider the deductibles and copays, and prescription copays in our lives, but be sure to check your policy on investigative drugs. Medical trials. Travel and time off work. Did you know that many insurances do not cover care if the “Standard of Care” doesn’t work? Some don’t cover food unless it’s eating out instead of buying a loaf of bread and lunch meat. Some only will cover hotel rates available to AAA members in the 1950s. Some will pay a portion of their “idea” of what your gas should cost, but only on the DATE of your appointment, even if you’ve had to drive out of state the day before or after.
Pray you never need to know the intricacies of your health insurance. Even if you mange to jump though the right hoops and snag every receipt, it would take a team of dedicated government trained legal assistants to maneuver through the paperwork. Oh, and then you can wait for over a year for any reimbursement.
Moral of the story.
Including your 20-something year old child should have some type of additional policies, because my 20-something had never been sick in her life. She had to use her insurance for the first time and we learned a very hard lesson: chronic health issues and cancer do NOT care about your age, your gender, your race, your educational level, or your income bracket. Buy that add-on policy you pray you never have to use. I mean, yeah, it’s going to crimp on picking up that name brand mayonnaise, skip a few cups of designer coffee or don’t upgrade your phone to get it, because you don’t know how important it can be.
Pray you never need it, never have to walk this walk or fight this fight while being financially sucker punched at every turn.
Traveling 400 miles for treatment in Houston, TX, at MD Anderson alone adds up. Lodging is expensive. On her third trip out of state, she and I were in Houston away from home and family for several weeks straight. After that, we’ve got weekly visits for treatment and tests will go on for the foreseeable future.
Imagine you are just finishing college. You’ve invested all these years into student loans and grades and worked from the bottom up in a field helping others, so you’d be all set in your field after just one more test. You’re 20-something, but you’re invincible; you’ve never been sick.
You’ve got all your ducks in a row and have considered every possible decision.
You have spent your entire life on college student budget working your own way through school, accumulating debt, but going into a field where you are guaranteed to be a super star. Soon, you are going to kick open the doors and rock the world.
You dream of the vacations you didn’t take because you had to write papers and pay for copies and laundry, and you begin to plan them in your head. You go to sleep, dreaming of how great it’s all going to be now that you’re done. Once that last test is passed, you can consider your future. You have dreamy conversations with your parents about how one day not only will you buy a house, but this will have a little retirement cottage in the back for them, and they won’t have to worry about anything.
You tell your baby brother to keep up his grades, you bribe him and tell him to work his way to and through college, but you will be there for him if there are any hiccups along the way.
Your phone rings on a Friday afternoon as you’re in a store looking for a pink bow tie for your little brother’s prom coming up this weekend. It’s the doctor you saw, and out of nowhere, he says you have cancer and he will see you again next week. Just like that.
You’re alone. All alone.
You’re holding a bow tie for the baby brother you adore and have dressed his entire life. Your life just changed. The air is sucked out of the room, and nothing moves. You walk over to the dress shirts and begin looking for his size, but now you can’t remember for sure if he has that adorable little boy neck or of he has now grown into a lumberjack.
You call your mom to check, but instead, “I have cancer” falls out of your mouth.
Everyone’s life just changed and it all hits you.
Imagine dropping everything to live in a city far away for a month while still having to pay rent, utilities, and a car payment. Leaving your bed, pets, plants, and family behind. Being afraid of checking the mail or answering the phone: there will be bills in there with numbers that look like jackpots for the PowerBall.
Seeing things you never wanted to see. Learning a language you didn’t want to learn (Cancer Speak). Realizing you aren’t in invincible 20-something with the world at your feet, that you now must depend on the kindness of strangers when you don’t even recognize yourself in the mirror.
In the meantime, you travel every week to Texas, three states away, sleep, eat, get prescriptions, anything else you might need. Make sure you keep your job so you can keep your insurance and have a life when this is all over. Oh, also, you’re fighting cancer, so we are going to dump some of the most horrible chemical combinations known to mankind into your body and you are going to be sicker than you could ever possibly imagine.
Lucky that our family is tight. We pull together we pull through. All of my kids have sacrificed what they have and the course of their futures for family members and this is no exception. WE ARE LUCKY.
Samantha’s cancer is rare, which means she’s interesting to the scientific world, which opens us up to the option of seeing the Most Genius Medical people on the planet who study her type of Cancer. WE ARE LUCKY that we were able to get together the resources to get her to the people who could try to help her in the first 3 months.
WE ARE LUCKY that friends, family, and strangers have taken it upon themselves to raise money, cook dinner, open their homes, offer a ride, send a card, give a hug, and pray for us.
We are simply terrified, we know the first chemo regimen and treatment plan failed. We see the doctors and nurses faces when they hear her diagnosis. We realize what it means to be in trials, research programs, and testing studies. We know that we can only get the only hope kind of help out of state. We don’t feel very lucky because we know as a family that as the expenses, bills, costs pile up, the income has gone down on several fronts. Things like car repairs, broken air conditioners and power going out don’t stop because of cancer.
We don’t feel lucky because there’s interest on the credit cards and interest on the payments, and we are paddling like a herd of ducks in a hurricane just to get thru every day. We don’t feel lucky because it’s unnatural, it’s unnatural and soul-emptying to be a parent whose child has cancer. We don’t feel lucky that ”she’s grown up.”
We are her parents and she will always be our child. We don’t feel lucky that “at least she doesn’t have kids,” because she loves children and wanted to be a foster mom, because that’s who she is.
We don’t feel lucky because no one who has cancer is lucky.