A Battle Won

“He lost his battle to cancer.”

Anyone who has ever held the hand of a person receiving chemotherapy knows the type of fight that it takes to have cancer.

I remember the first time my child received chemotherapy. Just after having her port-a-cath surgically inserted into her tiny chest, we were upstairs in her hospital room preparing ourselves for the procedure that would change her life. In just a few moments, my 2-year old daughter would be a cancer patient. Though her retinoblastoma diagnosis did, indeed, make her a cancer patient, it was the chemotherapy that really drove it home for us.

Nurse Lori walked into the room. “So, are you ready?” she said to me, trying to be both cheery and serious. Nurse Lori snapped on her thick rubber gloves, pulled on a protective apron, covered her mouth with a paper mask, and then put down her plastic shield drawn over her eyes.
“What is that for?” I asked.

“Yeah, uh, it’s to protect me. From the chemo agents. In case they spill,” says Nurse Lori tentatively. She knows how ridiculous that sounds.

“So, I know this sounds stupid, Lori. But, what is going to protect Joli from this chemo? The very thing you are protecting yourself from is going to be poured into my kid’s veins?” I said sarcastically annoyed, as if I was going to prove a point that she had never heard in her 20+ years of oncology nursing.

I’m mad. I’m confused. I’m scared.

Unfortunately, the routine got easier each time. Each time, I got used to the dance of protection and poison. Each time, I held my daughter close to me, while the nurses warned that I could be harmed if chemo spilled on me. Even when I changed Jo’s diaper, I had to wear protective gloves due to the concentration of chemotherapy in her urine.

Each day — even now, 4 years post-diagnosis — we still fight the fight. We are no longer in active chemotherapy, but cancer and its residual effects haunt us each day. Personally, we worry about her prosthesis, her implant, and hearing loss that resulted from chemotherapy. We hear from her friends about tears in the tissue that holds the implant. We are devastated by news that a retinoblastoma survivor has a recurrance or a secondary cancer. And, each time we hear that a life has moved on because of cancer, we know that we are not immune.

In the past few months, a number of celebrities have been featured because of their cancer battles. And, without hesitation, the headlines and announcements all begin with “… has lost the battle with cancer.”

Every day, every morning, every hour is a battle won over cancer. Certainly, moments and opportunities are lost. We lost the opportunity to send my daughter to pre-school at age 3. We lost the opportunity to just be a kid; while other kids were saying their A-B-C’s, Joli’s most often used words were “chemo, prosthesis, and cancer.”  We lost the experience of seeing a 3-D movie because, after all, you need 2 eyes to see in 3-D.

Each day is a battle won over cancer.

Our cancer book will never be closed. In fact, each day, a new sentence is written. Each month, a new page. Each year, a new chapter. And, when the time comes to close the book of Life, it won’t end with “a battle lost to cancer”, it will end with “the story was over; a battle was won.”

Our heartfelt condolences to the many people and families who bear the scars of cancer. Your battle was won. Your loved one’s battle was won. The day you were diagnosed, you won. Each day you walked into chemotherapy or radiation with your head held high, you won. Each day you decided to fight, you won. And, if that day has come when you didn’t want to fight anymore, it’s not because you lost. It’s simply because you have decided that your story was told; your impact was made; your gift was given.

We thank you for the gifts you leave behind for all of your loved ones. And, that gift is the story of your courage, your fight, and your love. For because of your battle with cancer, you’ve helped us to write our own sentences, our own pages, our own chapters. And, in the end, it wasn’t because you “lost a battle”, it was because you “won our hearts.”

While the recent celebrity news has sparked this entry, I am dedicating this to my college friend, Becky, whose mother in law is writing the next chapter. You are in my thoughts in a very special way. May you always keep singing.

Finance Based Health Choices

But, what if you don't have either...?

But, what if you don't have either...?

I’m quite privileged in the area of health care. For my entire life, I’ve been able to participate in private health insurance — health maintenance organizations, to be even more specific — and never have had to make decisions based on finances.

The first time it even affected my life was when I was 29 years old. My daughter, Joli, had just been diagnosed with cancer, and we were faced with an $88,000 surgery to remove her right eye. Her eye had been destroyed by dozens of tumors, and each day brought the cancer cells closer to her optic nerve. Her surgery was an emergency; we had no idea we were going in to the doctor for a cancer diagnosis. In fact, we thought she was going to just need glasses.

Due to a mix up in paperwork, we found ourselves at the hospital with no health insurance coverage. The paperwork was never sent in by my husband’s Human Resources representative, despite the fact that he had already been working at his job for more than 6 weeks.

“You need to pay $88,000, sir,” said the medical billing representative at the hospital, “in order for us to operate on your daughter.”

“I have $20. Is that enough for a down payment?” begs my husband.

“No,” insists the biller. “No, it’s not.”

My husband was begging for my daughter’s life in this office, while I was praying for her life in the entrance to hospital room.

There was a moment when I wondered if we would be able to go through with the surgery. Family members began to silently calculate the amount of credit they each had available on their credit cards; not enough.

Thankfully, my husband’s employer realized the dire state of my daughter’s life, and personally drove to the hospital with proof of medical coverage. And, as soon as the paper touched the Biller’s hands, the surgery was approved. Joli would live.

At the time my husband had completed his paperwork (6 weeks prior to our incident at the hospital), he had signed up for the “Best of the Best” insurance plans. I remember arguing with him at the time that it wasn’t necessary. “We never get sick,” I remember saying to him. “That plan is a waste of money! Highway robbery!”

Because of the purchase of the premium health plan, we were mostly covered by our insurance for my daughter’s enucleation (removal of her eye), her prosthesis, and the months of chemotherapy, MRIs, CT scans, injections, etc., etc., etc. We did have copayments of $250 a month, yet that was nothing compared to the thousands of dollars that were billed each month to our insurance. We did not have to worry about financial choices, we simply took care of our child.

Four years later, I’m finding myself making health choices based on finances again. I recently went in for some dental work, and my dentist made a mistake. Nothing to lose sleep over, but a mistake nonetheless. I had already sunk hundreds of dollars toothinto this dental work, and we were reaching that threshold — the point at which I need to make decisions like, “Can I get gas this week or will I have to pay more for dental work?” type of decisions.
When I called the specialist that the dentist referred me to, I asked about the price. “How much is this going to cost?” I asked. “Twelve hundred dollars,” says the kind voice on the other end of the line. “Very funny,” I responded.

There was silence on the other end.

“Wait, you’re not joking, are you?” I asked in obvious disbelief.

“No, ma’am. Sorry. It’s $1200.”

“Right, that’s before you bill my insurance, isn’t it?”

“Actually, no. If your other dentist already billed for the first procedure, then you will have to pay out of pocket for this. It would be $1200.”

WTF!! You gotta be F-ing kidding me with this BS!! Thanks for that information! Is there a cheaper way to do this?” I asked politely.

“Sure, we can do some of the work, and then you can go back to your dentist to finish it.”

“You mean, the idiot dentist that botched this up the first time?”

“Exactly,” says the voice on the phone. “If you do it that way, then the procedure will only be $200.”

No brainer, I thought. I have to go back to the original dentist. I don’t have an extra $1000 just to slosh around.

Now, I know that this dental work is necessary. I definitely put off some of this work for far too long. I can explain it away — got wrapped up in a new job, got pregnant and had to avoid x-rays, was busy with the newborn, work got busy again, etc. But, the truth is, I just can’t financially afford to do it right. I can’t afford to go to the specialist who would fix this problem. I am left with no other option than to go to the same dentist that messed it up to begin with, leaving me nervous about a repeat mistake.

And, yet, I’m holding a lot of privilege here. Why? Because even though my out-of-pocket is a lot of money, it’s still hundreds less than if I didn’t have insurance. Also, I actually had the privilege of routine dental care that would have been covered, and instead wasted my premium payments each month and put myself in this situation. I’m privileged because so many people don’t even go to the dentist because they can’t easily take off during work hours to seek medical attention. Others avoid treatment because of the cost. And many already have it so bad that the best option is just to let it get worse.

These are just a few reasons why I believe health care is a right, not a privilege. I take responsibility for the fact that I didn’t go and see the dentist sooner. Instead, like many, I waited until it got unbearable. My fault. Yes.

Yet, I don’t eat sweets all day. I brush 2-3x a day with the proper brushing technique — which few people do these days. I floss after every meal. I flouride rinse. I don’t drink soda or sugary drinks. I don’t chew sugary gum. I am a model-dentist-patient. And, yet, beyond my control, for whatever reason, I am prone to cavities. It’s always been that way. My genetics? My biological make up? Something that I just can’t alter….

A health care option for all means that we, as a nation of people, can avoid having to make life or death decisions simply based on finances. It means that everyone has a right to be healthy.

I know too many cancer families who have made decisions based on finances: Can we afford to buy the injections to increase white blood cell counts? Do we stay in the hospital an additional night or try and prove we can leave a day earlier to avoid paying another night? Do we purchase the food that would help us get better (organic, healthy, vitamin packed food), or do we have to purchase pre-packaged, dried food because they are cheaper?

And, if it helps you imagine this — we’re not talking about people who have “chosen” a risky cancer lifestyle (smoking, etc). Much more common are people who have been diagnosed with cancer despite an incredibly healthy lifestyle.

So, what is the solution? We make choices based on finances all the time. Yet, when it comes to health and treatment, should we have to make health choices based on finances?

Never Too Early

The other day, my 3-year old niece, completely unprovoked, said to me, “Tia Lizwhitecrayona, I’m white. You are not white.” This was the first time she had ever brought this to my attention.

“Yeah, sorry” says my Puerto Rican brother-in-law, “this whole skin color thing started since her first day in pre-school.”

“It’s okay,” I added. “She’s right. Good observation.  Though I’d prefer to be considered ‘brown’ and not  ‘not-white’, this is probably the first time she’s really talking about it.”

I returned my attention to my niece, “Yes, you’re right. My skin color is brown. Your skin color is white,” I replied.

Technically, yes, my niece’s skin color is white (or beige/off white – I’m leaving that one to the art majors in the crowd). Ethnically, however, she is Puerto Rican. She calls me “Tia”, she was raised on beans and rice. She is also ethnically Greek – her mother had her baptized in a Greek Orthodox church, she celebrates Greek holidays, and her extended family lives in Greece. But, her skin – the color is white. Her hair is light brown — though, curly like my own daughter’s hair. Her eyes are blue. She looks nothing like my Puerto Rican/Filipino children. You would never even think they were related.

In my circle of parent-friends, I’m rare. I’m still trying to get my friends to consider the effects of raising their children in a colorblind manner. Many of them still believe that it’s too early  — at ages 2, 3, 4 — to talk about race in a meaningful way. My husband and I both believe that it’s never too early.

In a recent Newsweek article, the authors of the new book Nurture Shock, draw from their research to discuss the problems of being colorblind and of not talking about race at a very early age. So many people want to a) wait until it comes up, b) wait until there is an issue with race, c) wait until they, as parent, feel comfortable talking about it. But, when is that?

The point Katz emphasizes is that this period of our children’s lives, when we imagine it’s most important to not talk about race, is the very developmental period when children’s minds are forming their first conclusions about race.

Are “colorblind” parents really raising colorblind children? Or, rather, are they raising children who are afraid to talk about color? Why is it so easy for us to correct a young child who says, “Only boys can be firefighters!” with “Both boys and girls can grow up to be firefighters!” but we are afraid to address when children bring up race? Rather, we shush them or tell them they cannot say things like that.

My role as a college diversity educator is to engage students in conversations about race/ethnicity/privilege/etc. I’m finding more and more, however, that college is the first time many of these students are talking about it. Only a year into President Obama’s election, I find it hard to believe they are already so “post- racial”; and, I do know that they aren’t really learning about race relations in school.

But, what about at home? Are parents afraid to talk to their kids about race? Are they more comfortable talking about sex? Or, does race follow the sex-assumption? That is, as parents, we kind of assume that our kids already know about sex. So, are we assuming that our kids also know about race?

For my husband and me, we talk about race all the time. We talk about skin color, about hair color, hair texture, why one child in our family needs the deep conditioner and the other child only needs a comb-through. We talk about the blond hair of my sister-in-law, the brown skin of my brother-in-law, and the almond eye shape of my own. My children have never been “shuushed” about race or color. Talking about race is as normal as talking about the cereal they had for breakfast. It’s just natural.

Nurture Shock. It isn’t without it’s critics of course. But, for the most part, I’m on board with the notion that kids learn about race at a much earlier time that most people admitted.

And, therefore, it’s never too early.

Birthing a Political Mommy

I admit. Prior to this year’s election cycle, I was never really a politics buff. I rarely paid attention to domestic nor international issues. I sort of knew what was going on  – at least, as much as the daily talk shows would give me. I never took an active role. Never picked up The New York Times to answer my questions. And, I never really engaged in any political activity. Sure, I voted. But, admittedly, I voted just down my party line and never paid much attention to the issues.

 

However, like most Americans, this time around was different. For me, as a woman of color, as a mom to biracial children, as the head of a cancer family, and as a person who works with underprivileged students, this election was different. I was obsessed with all things politics. CNN and NPR replaced reality shows (my guilty pleasure). Political documentaries – both Republican and Democrat – replaced comedies and action movies.  Autobiographies of political candidates replaced mindless, romantic cheesy short stories.

 

Growing up, my parents never really talked politics. As immigrants, I think they were more concerned with the day-to-day living as opposed to larger government issues. They voted Republican, I know that. I recall the names of the Republican candidates for whom they voted, but we never really talked about why. When friends came over, they talked longingly of the coryshirtPhilippines and of Filipino politics. I knew more about President Aquino (both of them) than I knew of any American President. As a kid in the 1980s, I regularly wore my bright yellow “People Power” shirt. But, U.S. politics — not so much. I kept up with Title IX stuff in college, had a basic understanding of legal ramifications of affirmative action in the Michigan case — all things that affected my life as a college student. However, larger issues didn’t get much attention from me.

 

Becoming a mother thrusted me into the importance of engaging in politics. Selfishly, I wanted to make our country a better place for my own children. However, soon after my daughter was diagnosed with cancer and we were faced with dire health care coverage challenges, I woke up to the fact that the issues that make our country a better place for my own children are the issues that have left others silenced. Painfully, I opened my eyes to the ways in which health care (or, rather, lack of) can destroy families.

 

From my friends, I saw how the war was tearing some of their families apart as men and women were called to serve our country again and again. I witnessed how the ongoing war was keeping mothers and fathers from their children, and how husbands and wives were growing further apart. In my own neighborhood, I saw how predatory lending has destroyed families, property, futures, hopes, and dreams. I see close friends drowning in credit card debt because of unemployment and high percentage rates. Each morning, I drive by the homeless parents and children who just can’t make ends meet. I hear the pain in my friends’ voices who have family members in Iran, Iraq, and Afghanistan. “My children” are no longer just my own. Motherhood has forced me to see politics as a social justice.

 

While my responsibility as a citizen drove my voting interest in the past, my responsibility as a mother has driven my voting in the present. I want my children to see that I take my right and responsiblity very seriously. Because we have family and friends living in places where voting is not a right, I need  my children to see the importance of actively partcipating in the process. Even in our own country, we stand on the shoulders of those who did not have the right to vote, and that is why it is a right I take seriously.

 

This particular election gave me some of the most important teaching moments as a parent. One of the most important lessons we discussed in our home is respect. Respect. During the campaign period, the outwardly displayed and displaced hatred and attacking of character, race, religion, position, ethnicity, and ideas during this election was just horrifying. I was appalled at the imagery people chose to use to ignite terror and fear. I was saddened to see attack of character when people should have been attacking issues. Yet, it provided a basis for my husband and me to talk with our children about respect for people.  It was an opportunity to teach our children that a) not every one has to agree, but b) everyone deserves to be treated with dignity. At the same time, we also teach our children to stand up for what they believe in – no matter who is going to criticize you or judge you. We teach them that, while we must sometimes compromise agreeing to disagree,  no one should compromise their humanity, their dignity, nor the dignity of others in this world.

 

Just after the election, I wrote on my Facebook status that I was “proud to be an American.” I received lots of “likes” and “comments” that supported my status. And, I found plenty of my friends who wrote that “it is a sad day for the U.S.”  Fine, I respect that. Yet, a comment by a Friend started a 35+ comment thread on my own page. This Friend challenged that I should have always been proud to be an American. We then went back and forth about how I haven’t always been proud of our how country, as a whole, treated people both in our history and in our present. But, regardless of our very different views, this Friend and I still treated one another with respect. It is possible. You can disagree and still commit to treating others with dignity.

 

My children are now 6 years old, 3 years old, and 6 months old.  And, unlike some, our children aren’t just repeating the political views of my husband and me. We’ve been very aware of asking them their opinions and requiring them to provide reasons for why they think what they think/ feel what they feel. We challenge them on their assumptions. We push them to think of the person vs the problem. We ask them about intent vs effect.

 

It’s not too early. It’s not too early to teach children respect, dignity, and appreciation of diverse viewpoints. It has taken the birth of my children  — my role as a Mommy — to open my eyes to politics, and my hope is that they will continue a life of social responsibility and justice in their own.