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Sam’s Fight Against Triple Negative Metaplastic Breast Cancer

Cancer care is expensive.

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.

EVERYONE.

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.

MD Anderson Infusion Therapy

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.

That is Sam’s life now.

The simple fact is,  WE ARE LUCKY.

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 don’t feel lucky at times. 

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.

WE DO FEEL loved, humbled, grateful, and blessed.

Proud Mom And Ally: Be The Change

Where my family lives, there are very few people who know what transgender means, even though we are a sizeable city. Not even the doctors here knew what transgender meant until we explained.

Imagine having two transgender children in a community that is extremely conservative and evangelical. The schools are unwelcoming. The churches are unwelcoming. Most people reject the local LGBT individuals. The state legislature is actively pursuing bills that legalize discrimination against people like my children.

Given that the trans population is less than half a percent of my state’s population, the lack of awareness of trangender people is unsurprising.

Visibility of transgender people in the media is increasing, but not at a rate fast enough to make a dent in the general population. Here, where we live, at least, visibility occurs as the few LGBT people come out of the closet to their families, friends, coworkers, and ultimately to the community as a whole.

Being out in a conservative, Republican city and state is often dangerous. Add in any other minority characteristics and the danger to the individual increases exponentially.

My two wonderful teenage transgender sons have to navigate this world. It is terrifying to think of them in the school setting (so they are homeschooled), unbelievably frightening to think of them out there alone and out as they medically transition in the future.

Transgender visibility and awareness is vitally important. My kids were born into the wrong bodies. In the second trimester of my pregnancies, each of them were exposed to increased testosrerone, changing their brain structures to resemble male brains (https://www.sciencedaily.com/releases/2018/05/180524112351.htm).

Like sexual preferences, being transgender is not a choice. My sons, despite the identification at birth being female, are male. Because they are trans males, they are the lucky ones. They are less likely to be abused, less likely to be killed than trans females. They will, with testosterone, grow facial hair, increase their muscle mass and deepen their voices. They will enter into society with the stereotypical male look with ID cards that match their genders.

Most transgender people are not fortunate enough to have accepting families and doctors. Most struggle and suffer because of the extreme prejudices they face.

As allies to the LGBT community we can help change these struggles. We can make sure that all people are accepted and treated equally. Trans visibility is key, but without our speaking up for the community, for our friends and family members, change will be slow. We must make this a seismic change.