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.
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.
Nobody has ever said that pink walls and pastel artwork helps those with cancer cope.
This is her story:
Have you ever wondered who chooses the artwork hung in your doctors’ offices? The first time it occurred to me was when I had an ultrasound on my breast–having already been diagnosed with breast cancer (my daughter was 8 months old, my son was 3). The walls were pink, the paperwork was pink, the robes were pink. And on the walls held ungodly Georgia O’Keefe knock-offs. You know what I am talking about…the “blossoming flower” (wink wink).
In the “Women’s Imaging” center that day, the color scheme and fallopian-tube flower work was as if to say “Hi, you have cancer, but if you gaze long enough upon theses soothing feminine images, you won’t mind as much.”
Two months later, I visited my mother at the at a prominent cancer treatment facility 90 miles away. She had been diagnosed Stage IV colon cancer only a few weeks before my breast cancer diagnosis. I walked into a wide, long room hosting at least thirty patients in big, lazy-boy recliners. Each person was “under the bag” (cancer-speak for getting chemotherapy), faced toward the center of the room where sat the biggest fish tank I have ever seen. I mean, it was obscenely big—jutting out into the middle of the room in all of its aquatic resplendence like a big middle finger flipping off every cancer patient.
All of those people, their lives distilled down to hours spend under a chemo bag force-fed aquatic serenity—as if they were children in a pediatrician’s office—easily distracted by shiny bright objects floating in water. Something tells me not one of those people felt better about the fact they were getting chemo because they were looking at a fish.
When I stepped into one of the private rooms to see my mom she, too, reclined in a chemo chair—sick. A whisper of the woman she once was. And above her, one badly painted picture of…a lily pad. I went on over the next few months to my own cancer treatment. I took notice of the floor to ceiling photographic murals of “peaceful scenes” in my oncologists’ minuscule examination rooms.
When I lay down on the table my toes nearly touch the nose of a fuzzy bunny in a field in Exam Room 1; a doe grazing in the dew of a spring morning in Exam Room 3; or the tepid water of the pond holding LILY PADS. Right next to the medical chart of the female reproductive system is an 8foot x 8foot wall of LILY PADS!!!!!
I kid you not.
I thought it mere coincidence until I was received further treatment at a nationally renown university cancer center. Waiting room? Fish tank. Exam room? LILY PADS!
By this time I’m pretty sure these lily pads and fish tanks are some sort of secret code for kind of insurance we all have. Or portals into a fourth dimension. What is the art work like at HIV clinics, or pediatric cancer units, or prostate cancer centers? Thrusting erect shapes in dominant tones? Exactly how is someone else interpreting our fears for us and prescribing certain images to calm us?
I don’t know about you, but when I walk into my oncologist’s office I need to either see Lenny Kravitz working behind a Starbucks cart or Johnnie Depp, shirtless, handing out Valium if they want me to get my mind off of why I am there. Fish tanks, lily pads and Procrit squeeze balls key holders to the women’s room don’t cut it.
Can you imagine if every woman diagnosed with cancer walked into a doctor’s examination room and given paint and a blank wall? I doubt we would find one freaking lily pad…ever. What would you paint on your doctors’ walls? What would your mother have painted on the walls of her doctor’s offices?
And don’t get me started on the images for pregnant women…I have been a birth professional for nearly a decade, and I have NEVER seen a woman dilate more when gazing upon a protruding petunia.
Screw the pastels—we are women for god’s sake, stronger than any other element in nature.
So I go to my 6 month check up with the oncologist. He’s been my doctor for years. Nice guy who gets me. I am in the exam room when a strange doctor comes in and out of my mouth flies: “Who the hell are you?” SNAP! Dr. Young-Thing proceeds to tell me he is a resident (oh crap), and that he is going to examine me. Like a deer in headlights, I say, “Like hell you are…where is Dr. S?”
I thought for sure he was going to push some hidden button for non-compliant patients. But he sits down and pulls up my chart online. Dr I-Have-Tattoos-Older Than-You proceeds to overview my ENTIRE medical history with me. We are talking 7 years.
I’m thinking: Noooooo, it was 2003 superstar, now get me the real doctor and do your fancy learnin’ on someone else.
“I am going to examine you–is that okay?”
To which I say, “No, not really, but I will let you see the magic that is my mastectomy!”
Oh, I was in rare form. (undoubtedly precipitated by a phone call with my parents not ten minutes earlier that mimicked Terms of Endearment–where I was ready to go Shirley MacClain on my dad’s sorry ass—”Get My Mom the medicine NOW!)
Dr Young thing: “I am feeling for your spleen, don’t find it.”
Me: “Wow, you need to study more.”
Dr. YT is fairly flustered by this point and steps out–leaving me the keys to the kingdom– My personal files online, for me to read! AHHH yeaaaaa! You know I did, kids. I sat right down and scrolled through that puppy like I was on a shopping spree at eBay. Okay, you ready…Here it is…the undeniably recorded in history and for all of UCLA and the world at large to read as a description of me as written by a my oncologist:
“This is a pleasant lady, alert and oriented x4, in no acute distress”
A resounding endorsement for Zoloft if I have ever heard one.
By then my real doctor, the author of my epitaph, comes in. I tried really hard to be “pleasant, alert, oriented x4 (not sure what the highest possible score is, but I am optimistic). Now, he has passed several of my is-this-doctor-a-dipwad litmus tests and so he is familiar with my work as a pain in the ass patient! He does his thing, and I tell him they should tell folks before they send a resident in to a patient.
He asks, “Why?”
“Because I had cancer, have no boobs, and a right to choose who looks at the train wreck that I call a body, reads my history, and for that matter is in the same room with me.”
I think I lost points for “pleasant lady…”
But then I look up at Dr Young Thing, and see his name tag. “Dr. Krishna” to which I said, “man, not much pressure with that name, huh?” They both started laughing so I think I got some points back for pleasantness.
The best…and I did this for all of you…is when I left. I saw yet another Dr. Young Thing standing in the back office. He was beyond GORGEOUS! I said to the whole staff, “I will have him as my resident next time, thanks”. Could have heard a pin drop…
Love to all of you pleasant, alert, and oriented x4 women out there who are only occasionally in acute distress…
1. This Band right here? Y’all? Knock me over with a damn feather for how blown away I am by you. Your words, support, mad crazy love and humor are sitting at the tippy top of the stuff-I’m-grateful-for sundae. I love each and every one of you and there will never ever be way for me to express my love and gratitude. I wish I could make all of you chicken parm. Because my chicken parm rocks.
2. Anyone offended by the word fuck in all its versions and glory should probably stop reading right now. (I just re-read this post. Take this warning seriously.)
3. If you don’t mind, oh interwebbers, I’m probably going to be here a lot. I JUST started my own blog but this little issue I’ve got going on is a little personal and raw so this is stuff I’d like to keep here, where I feel safe and loved. Do you mind ?
OK. So the doctor’s office was essentially big, mega, fucking bullshit. After sitting in the waiting room for NINETY MOTHERFUCKING MINUTES, I finally see Dr. V. who does a little poking around my poor sore breasticles. You know, they should really have a class in medical school on the poker face. Like, I don’t need to see you looking startled. Oh, and I also don’t need you to ask me three times if there is any chance that my eggo is preggo. Dude, I am so fucking sure I’m not knocked up. I mean, if I am, hallelujah because not only does it explain the sore boobies, me and Chelle are about to be really, really rich. And I may even be able to make it on the Rachel Maddow show.
So he immediately starts writing out the referral for a diagnostic mammogram and sonogram and informs me that depending on what those show, we may need to do a biopsy. A biopsy? Doesn’t that involve a needle? In my boobie? Speaking of needles in my boobie, yes, my right nipple is pierced (that’s a good story, I will tell it to ya someday). He also looked at that in horror and informed me that I need to take it out. Which, I mean, I knew but that’s an added stress because it has been there for almost 15 years. It has never been taken out. When you go through 12 gauges of needle going IN, why the hell would you ever take it out? Plus its lots of fun going through medical detectors in deep south airports. So yeah, I’ve got to worry about that, too. Motherfucker. He also gives me a prescription for this massive antibiotic in case it is mastitis. He jokingly informs me that this is what he gives teenagers to treat their acne, so my skin will be great. Okay, first of all dickwad, my skin is already pretty fucking awesome. Secondly, I’m not here about bumps on my fucking FACE!!!
Anyway, referral for all the poking, prodding and boob squishing in hand, I leave the doc to walk over to the CVS to fill the prescription for the antibiotics. I am all about being proactive, so I decide to call the imaging center he has referred me to and see when I can get in because he said sometimes they are open on Saturdays. Full of the Win right ? Well, not really since I am informed that my motherfucking government employee insurance is not accepted there. Are you fucking kidding me? So now I’m pissed. I drop off the prescription and head over to Starbucks to wait for it and to call the motherfucking HMO. They inform me that even though it’s a DIAGNOSTIC mammogram, not a shits and giggles one, there are a very limited number of centers I can go to, all of them roughly in Indonesia. AND I am currently car-less (another sorta funny story).
Again, ARE YOU FUCKING KIDDING ME?
And, just because I was CLEARLY Attila the Hun in a past life and karma is making me its bitch, Monday is a holiday so I dont know if any of these places are open. I leave for fun-filled Kansas City, Missouri Wednesday morning for six days. So basically if I can’t get an appointment for Monday or Tuesday, I’m laying up in Kansas City, stressed the fuck out, licking BBQ sauce from my fingers, with sore boobies and a growing sense of dread and doom. For SIX MOTHERFUCKING DAYS.
So that’s where we are kids. I’m glad that I’m fairly consumed with a cocktail of detachment and general pissed off-ness so the panic and fear have to take a number for now. But ya know what? I am going to kick that lump’s ass, no matter what it is. I’m bigger than whatever it thinks it’s got. And I have one hell of a posse.
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.