The Strength to Carry: One Mother's Journey with Genetics

These past few days, I've been experiencing breast pain. While it may be just the normal ebb-and-flow of breastfeeding, any pain in my breasts makes me scared, anxious, and nervous. I was going to hold on to this essay for a while - not sure when I was going to release it. But, today, I've decided that 2010 will be the Year of My Mastectomy. So, during this season of giving thanks, demonstrating love, and seeking peace, here is my latest essay into my personal journey as a cancer mom, cancer sister, and a cancer pre-vivor. Thanks for reading! -Liza "I don't know how to tell you this, so I'm just going to say it." Those words hung in the air like smoke in fog. Time sped up and stood still all at once. Slow motion met the click-click-click- quadruple fast-forward of my DVR menu. "Your daughter has cancer."

I clutched the waist of my 2-year old daughter sitting still on my lap. I could feel my own heart racing through her tiny body, and I could feel her breath on my arm take the place of my own breathing. I wanted to scream and crawl in the fetal position, recalling just two short years ago when she was safe and protected in my round belly.

"Please do not give her anything to eat or drink," stated the pediatric opthalmologist. "We may have to operate today. If her cancer is advanced, we'll be removing her eye tonight."

Within 24 hours, my daughter went from a carefree 2-year old in an Elmo shirt to a child with cancer. The 6-hour surgery to remove her eye freed her from the tumors that had destroyed her vision. Enduring six months of chemotherapy meant we could kill any stray cells that passed into her optic nerve, reducing her risk of cancer cells spreading to her brain. Once our lives settled into the routine of chemotherapy, hospitalizations, exams under anesthesia, and bi-weekly flushes of her port-a-cath, I obsessively combed through photos to find signs of leukoria - the tell tale white reflection in my child's eye that would have alerted us to retinoblastoma. In the hundreds of photos taken between birth and her 2nd birthday, I only found a handful. But, those handful have tattooed themselves into my palm. The guilt stamped it's place in my heart. The image of her a prisoner to IV lines burned in my brain.

"What did I do to make this happen?" I tortured myself with this thought every day. Once a skeptic of prayer, I found myself on my knees every night asking, begging, pleading with God to let me switch places with her. "Please, God, let me have cancer instead. Please, God, give me her tumors. Make me feel her pain of chemotherapy. Make me a prisoner of the pain. Just let her be a kid. I'll do anything."

While my daughter was going through treatment and recovery from enucleation, I became pregnant with our second child. My already lengthy prayer requests had included a new request: "Please, God, seriously this time! Please let this baby be healthy. Please don't let this baby have cancer." I was asking God this even though we had no confirmation that my first child's retinoblastoma was related to genetics. Given that her retinoblastoma was unilateral -- only in her right eye -- her cells likely mutated with no specific direction from her DNA. But, we had not undergone genetic testing for her cancer, so we were unsure about the cause at that time.

My pregnancy was both a blessing and an emotional curse. While my growing belly was a welcome distraction to our hospital and doctor's visits, I was consumed with the fear that my body had created the retinoblastoma in Joli. When pregnant with Joli, I was a healthy weight, ate all organic food, avoided caffeine, and got lots of sleep. My body was my temple. Now, with my second pregnancy and a sick child, most of my dinners consisted of leftover hospital food. Anxiety kept me awake at night and exhausted during the day. Caffeine was the only way I could make it through my 40-hour work week in a relatively stressful job. And, the first pregnancy and stress made every bit of food stick to my hips, thighs, and butt. My body was less like a temple and more like an empty cardboard container where "two all beef patties, special sauce, lettuce, cheese, pickles and onions on a sesame seed bun" once lived. Drive thru.

Shortly after I gave birth to a healthy 8lb 9oz baby, doctors checked my new infant's eyes for any signs of tumors. Thankfully, she did not show any signs of retinal tumors at 3 weeks old. This baby child continued to have eye exams every 3-6 months for the first 2 years of her life since we did not have any confirmation of whether the original cancer was genetic in my family. Each time she went for an eye exam under anesthesia (done this way so that the retina specialist can examine a young child without having to struggle), we held our breath and prepared ourselves for the worst. I did this each time out of sheer protection against a surprise diagnosis. Now, at age 3, my younger daughter has been cleared of any risk of retinoblastoma and has graduated to once-a-year exams in the office.

Just after my older daughter had finished chemotherapy, and just when our lives were beginning to return to normal, my oldest sister, Mary, was diagnosed with a very aggressive breast cancer at age 36. Given our family history with breast cancer, her doctors asked if they could test her for the genetic marker -- known as BRCA -- for breast and ovarian cancer. Mary tested positive for the genetic deletion. However, regardless of the genetic outcome, Mary had already developed advanced stage cancer -- the kind where you begin to plan for a life without her -- and had aggressive chemotherapy, radiation, and then a bilateral mastectomy. My sister was already so immuno-compromised when she went through the very risky surgery of of a bilateral mastectomy. She needed to follow this protocol because the tumor in her breast was so large that they had to shrink the tumor before even trying to remove her breasts. It was at that point when my sister, Grace, decided to get tested for BRCA. At age 34, Grace had not been diagnosed with cancer, but she wanted to assess her risk of developing cancer. After all, having the BRCA gene meant that there would be a 80% chance of developing breast cancer and a 60% chance of developing ovarian cancer.

After working closely with a genetic counselor, Grace tested positive for BRCA gene. She decided that a prophylatic bilateral mastectomy -- a procedure done to reduce the risk of cancer preventatively -- was the route she wanted to take.

Having just put my daughter's cancer battle behind us, I was reluctant to get tested. And, I was hoping to play my schoolyard odds with "Well, best 2 out of 3, right? I mean, 2 people already have it, so there's no reason for me, the 3rd, to have it." That was the fun side of me talking. The more angry side of me sounded like this, "No way, there is no way that I would test positive for BRCA. We've been through too much already. I'm pretty sure shit doesn't hit the fan twice!"

Through peer pressure, or "sister pressure", I went and met with a genetics counselor in Boston to gather some information about the process, about BRCA, and about my odds of having the gene. In October 2007, I walked down the very familiar hallways of the cancer treatment center that had become home to my family from August 2005-April 2006. I knew that the benefit of doing all of our testing in one place would be the ability to share information. We could share not only the information of the sisters, but we could also include my daughter's cancer information if it ever became relevant to our own BRCA experience. And, so, I began my testing.

I sat across from a kind, caring, and friendly genetics counselor who reminded me of a childhood friend that I dearly loved. Arrogantly, I told her that she did not really need to go into all the details about cancer, BRCA, and genetics given my experience and my sisters' obsession with all things BRCA. "Go ahead. I know all the statistics. I know that I have a chance of being BRCA+. I know that, if I do test positive, that a mastectomy would reduce my risk by about 80% and an oopherectomy -- removal of my ovaries -- would reduce my risk of ovarian cancer by around 60%. But, I'll cross that bridge if I have to. For now, let's just get some results." With all that we went through with my daughter having cancer, I was confident that I would come up negative for BRCA. I figured God, destiny, faith, or the good natured order of the world would make it so.

Apparently, I was wrong. Yet, my prayers had been answered. Not my prayers to avoid being BRCA positive, but my prayers back in 2005 by my daughter's bedside. Just a few weeks after I gave blood to my genetic counselor, my test came back. I, too, was BRCA positive. While I knew what the results meant for me, I felt a sickening pain for what the results meant for my kids. What is the likelihood that I have passed on the BRCA gene to my two girls.

What have I done? What did I just do to them? What kind of mother am I? I really didn't care what I'd have to go through. After all, I just saw my oldest sister go through chemotherapy, radiation and a mastectomy. I watched as my other sister went through a preventative surgery to have her breasts removed. I wasn't sure what I was going to do, though. All I could think about was my daughters. Particularly, my daughter who had just finished cancer treatments. Did I give her the genetic predisposition for both breast and ovarian cancer? Does the baby, too, carry this ticking time bomb of DNA?

I found ways to distract myself from obsessing about my genetic responsibility and my own physical responsibility. I began doing what any psychology major would have done -- I intellectualized the process. Freud would be so proud. I began speaking more about retinoblastoma, participating in fundraising events, creating college workshops and presentations on the experiences of cancer and pre-cancer, and joining online groups for pre-vivors and even for young pre-vivors. I've dedicated blog entries about being BRCA, spoken publicly at work, followed up on all of my medical tests and baseline diagnostics, and have even talked at length with my sisters about their surgeries.

But, I have never seen my sisters and their mastectomy sites. I never touched their drainage tubes. And, the very thought of what their saline-and-sewn breasts must look like makes me queasy. I'm immensely proud of them for what they have endured, and yet I can't bring myself to look at them.

In December 2009, my sister Grace called to tell me that she was celebrating her Mastectomy Anniversary. "That's great, Grace! Happy One Year Anniversary!" I said with such pride. "It's been two years, Liza. Two years," she replied.

Shit. Two years? It's been two years? That means that it's actually been two years (and 2 months) since I first met with the genetics counselor and discovered I was BRCA positive. It's been three years since the breast specialist and the gynecological oncologist both said to me, "We can schedule your surgery anytime. Any time soon." The folks in those clinics don't mess around. When they get confirmation that you are BRCA positive, they expect you to be in a paper thin johnny in the Recovery Room shortly thereafter.

***

In July 2008, after a year of baseline tests that determined I had not developed any cancer cells, I found out that we were going to be expecting our third child. I was filled with joy and excitement. And, I was even more excited when my cancer team called to set up my next appointment because I said, "Yeah, about that appointment. I can't do any tests for a while because I'm pregnant." Needless to say, they were less than thrilled. "You know that this means we won't be able to monitor you closely for any cells, right, Liza?" Did I have to say, yea, kind of the point? Freud would not be so proud.

***

In October 2008, at a routine obestrics exam, my OB/GYN felt a solid lump at the 7 o'clock location of my right breast. "When you check your breasts, have you noticed this lump?" he asked. I heard myself say, "No, why? Do you feel something?" What I was thinking, though, was "You mean IF I check my breasts, right?"

"Feel here. Deep. Right here," he said as he positioned three of my fingers in the 7 o'clock position near my right nipple. I pushed down where he had placed my hands and felt a pea sized lump deep within the tissue of my right breast. I felt my fingers leap off of my breast, and felt a grapefruit sized lump begin to form in my throat. Don't cry. Don't cry. Don't cry, I kept telling myself. Breathe now.

"You should call your cancer team right away," said my OB/GYN in a panic. "Can they see you right away?"

"Oh, yes. Yes, they can."

***

I called my cancer team from the parking lot. And, sure enough, my appointment for a Fine Needle Aspiration was scheduled in 2 days.

***

Those two days were awful. I fought the urge to let my imagination run wild. I lost that battle. I also did something a person should never, ever do when in a stage of crisis: I Used Google. I searched for all types of outcomes regarding cancer and pregnancy, chemotherapy and first trimester, radiation and fetal development, mastectomies while expecting. Naturally, nothing positive came out of those late night searches. I'm pretty sure it would have been a good time to buy stock in Kleenex tissues, because I can only imagine how much of their product I used in 48 hours.

***

The day came for my Fine Needle Aspiration. I was scheduled for an FNA as well as a breast ultrasound. Whenever I speak to students studying Health Care Administration, I usually bring up this doctor's appointment because it was one of the most nightmarish moments of my whole BRCA experience. Exposed, topless, and already emotionally unstable, I was subjected to a "well-meaning" doctor who decided to tell me that I was already delaying any survey of my condition because I got pregnant, that I really shouldn't breastfeed after my baby is born so that I can start up my survey tests immediately after I gave birth. "After all," she says,"I have seen too many women with advanced stage cancer because they decided to breastfeed and forgo their examinations. Breastfeeding doesn't promote bonding. Breastfeeding isn't any better than formula. And, I have 2 kids, never breastfed either of them, and we love each other so much." Oh, lady. Please stop talking....

If my boobs weren't flapping in the wind and my growing belly in the way of getting up quickly, I would have walked out of that room and demanded her supervisor. But, already emotionally wrecked, all I could do was roll my eyes and "uh-huh" her.

Thankfully, my cancer team (aside from random Breast Ultrasound Doctor) is amazing and called me with my results as I was walking to the parking garage. "It's fine. The lump, which we all agree is there, does not have any cells of concern after doing 2 Fine Needle Aspirations. Come back after you deliver so that we can begin our survey of you quickly. Have a beautiful pregnancy."

I got into my car and cried tears of relief. Then, I cried tears of pain. I'm not sure how many of my readers are familiar with Fine Needle Aspirations, but that procedure hurts! I think I had numbed myself to the physical pain in anticipation of bad news. Once the good news came, so did the burning pain in my entire breast area. And, just when I thought it couldn't get any worse, I realized that I was leaving Boston at 4:00pm, with no additional passenger to ride the HOV lane with me. And, I really had to pee.

***

I managed to put the breast lump experience behind me and focus on having a healthy pregnancy. I convinced myself that this was my last baby, my last shot at feeling a growing being inside of my belly. This would be the last time I would feel the kicking, the hiccups, and the heartburn. This would be the last time I would place my hands on my stomach at the end of a long day and feel comforted by a stray heel, an intentional turn around, or a tightening Braxton Hicks contraction. This would be the last time I would provide nourishment for my biological child through breastfeeding. The last time I would lie down next to my infant and comfort him or her to sleep. With the removal of my breasts and ovaries, this would be my last time.

*** On March 24, 2009, I delivered my son. He was a healthy baby, 7.5 pounds, 20 inches long, dark brown eyes. Soon after I delivered, our pediatrician looked at his eyes to make sure there were no tumors. At 3 weeks old, we brought our son to our retina specialist for an exam. And, at 3 months, 6 months, and 9 months, our son returned for exams under anesthesia in case our genetic test stating the retinoblastoma of my daughter was an isolated mutation --which is only 80% accurate -- missed something. As of his 9 month visit, we are still clear of any tumors.

*** At my visit to my OB/GYN for a routine exam, the doctor said, "I see in your chart that the OB who delivered your baby in March recommended that you consider the permanent birth control. You turned it down. Why?" she asked. "Well, while I've talked seriously and publicly about how this is my last child, it's much harder to actually make that happen when the decision is possible. So, I'm not going to really consider a permanent solution yet," I replied with much more confidence than I had in the past. "Well, given all of your genetic testing and information, are you sure you want to keep passing these mutations on?"

"Well," I said calmly. "Given that my children only receive 50% of my DNA and 50% of my husband's DNA, that's still a pretty good chance that they do not have all BRCA or any other genetic mutation. So, yes, I think I do want to take my chances. But, my concern isn't with what I'm passing on. My concern is more focused on how much time I can buy and gamble with knowing that I am BRCA positive."

I'd like to think I created a teachable moment for the young doctor who had just joined the practice a few weeks prior to my appointment.

***

I'm not sure where the story ends, quite frankly. There are days when I feel I have no strength to carry, and there are days when I'm not exactly sure what load I am carrying. Just the other day, my daughter, the cancer survivor, asked me about how she got her cancer (a cellular mutation) and how her aunts got their cancer (a genetic mutation). When my daughter was going through her treatment, I made a single promise to her. I promised I would never lie about cancer. I explained about "good copies of DNA" and "sick copies of DNA" and how those combinations sometimes result in cancer. As I spoke of her aunts -- my sisters -- she then asked if I would get cancer. I told her that I wasn't sure, but that I probably was going to have surgery on my breasts no matter whether I got cancer or not. My daughter began to cry. "Mommy, I really hope you don't get cancer. Cancer really hurts, and I don't want anyone to be hurt." I explained that sometimes we have to experience hurt in order to see the beautiful things. That it hurt when I was in the hospital to have my babies, but that they were all the most beautiful things in my life. We talked about how it must have hurt to have her eye removed -- though, she doesn't remember it -- but that now she is a healthy and beautiful 6-year old girl.

*** I always promised my daughter that I would never lie to her about cancer. There are just some days when I wish I didn't have to tell her the truth. The truth is a burden to carry. The inabilty to predict the future is the uncertainty to carry. But, my children, my health, and the will to be around for many more years to come gives me the strength to carry.

Finance Based Health Choices

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?

Raising a Body Positive Girl

For as long as I can remember, I've been obsessed with my weight. I can't remember the color of my first backpack, can't really remember what type of bedsheets I had when I was little, and I can't remember what my 2nd grade teacher looked like. But, I can remember exactly what my first bathroom scale looked like. Actually it wasn't mine. It was the bathroom scale in my parent's room. The scale was oval, dark brown, and had large black numbers in the transparent screen at the top. It had a textured top, too - kind of like little triangles scattered in a geometric pattern. At every chance I could get, I used to sneak into my parent's bathroom and step on the scale.

Weight was always an issue in my family. Not sure if it was cultural or just something that occured in my own extended family, but the phrase "Hello! My, you look so fat!" was the said in place of "Hello! How are you?" Everyone commented on how fat someone had gotten.

I know I was a pudgy kid. For a little Asian girl, I had a butt that protruded out. Standing up straight, the natural arch in my back accentuated my 6-year old bum more than any other kid I knew. And, because I grew up in an all-white neighborhood, went to an all-white school, every other kid I saw had a stick straight figure. I stood out in lots of ways.

I went on my first "diet" at age 11. By the time I was 13, I started skipping school (sorry, Mom and Dad!) just so that I could spend the day working out. But, I always did indoor aerobics so that none of the neighbors saw me running around the block and call my parents. By the time I was 16, I was doing 300 sit ups every morning. But, it was when I was 18 that my obsession with weight hit an all time high. I counted every calorie that went into my body, and every calorie that was burned off. Four years of college, and being surrounded by wealthy, skinny classmates didn't make it any easier. I did this all while writing my Honor's Thesis on "Eating Disorders." How ironic.

I knew I wanted to be a young mom, but I feared being pregnant. My husband and I talked about what it would mean for my body to change, for my stomach to get bigger and, more importantly to me, for the numbers on the scale to get higher and higher. Through some preventative measures, I ended up being just fine with the weight gain. And, for the first time in my life, I embraced my growing body.

Being pregnant, seeing the beauty that grew inside my body, was very healing for me. I gave birth to the most beautiful and precious little girl. And, on the day she was born, I looked her in the eyes and promised that "weight" would never be something that I taught her to fear. Who would have known that, two years later, those same eyes would betray her with cancer.

For years, I fought having a scale in our bathroom. But, with additional pregnancies, I wanted to make sure I was gaining a healthy amount of weight. Six months after the birth of my son, the scale is still in there.

The other day, I stepped onto the scale just as my daughter walked in the door. "Oh, Mommy! I want to weigh myself too!" I froze. I didn't want her to weigh herself. At 6-years old, she is at the same age as when I started my first diet. My daughter is built similar to me. She has a little bottom that arches out. She also has legs that are twice as long as her body, and she is in the 90% percentile for her height. "50 pounds" said the scale. How do I react? Do I say "Ooh! Cool! 50 pounds!"?? Do I say "Yes, 50 pounds."? Or do I not say anything at all. As I thought of repercussions of each statement, I realized the growing silence was also sending a message. "50 pounds, Mommy! Is that good?"

Is. That. Good.

Those words hung in the air. I began to feel my tears come to the surface. I wanted to say, "it is what it is", but she wouldn't have understood that. Instead, I heard the words, "50 pounds. 5-0 is fifty. Okay, let's go get dressed," and I took her out of the bathroom.

How do we do this? How do we raise body positive kids? I wasn't one. I'm still not one. I'm in my 30s, and while weight is something I've grown to embrace, it's hard to shake the 20+ years of being cruel to my body. And, more importantly, cruel to my mind.

How do I teach my girls to embrace their bodies? How do I teach them that their body structure - as  a reflection of their culture - may be different from others? How do we teach children to loosen their interpretations of what is acceptable, what is beautiful, and what is criticized?

What Makes them Whole

(Note: I wrote this back in the Summer of 2008, swore I had published it somewhere, but can't seem to find it. So, my apologies if you've read this already, but I figured it was worth re-posting anyways! Enjoy - Liza)

There are so many times when I've wanted to give up the fight against racism. There are many of my friends and a few of my favorite bloggers who have. There are days when I sit at work thinking, "Is this worth it? Can we really heal? Can we really learn? Move forward?" There are days when I want to scream, "I quit!"

Thankfully, I know that there is at least one week during my race-filled year when I do recharge and when I am humbled. This past week, I spent our 2nd visit to Camp Sunshine, a retreat camp for families with children with life threatening illnesses. My daughter was diagnosed with cancer just a few weeks after her 2nd birthday. It rocked our world. It changed our lives. She was diagnosed with retinoblastoma - a rare eye cancer that resulted in the removal of her right eye, 6 months of chemotherapy, and dozens upon dozens of doctor's appointments, hospitalizations, and tests.

I tend to link disability activism with racism activism because I believe that, at it's core, our goal is to raise children who treat others like human beings in this world.

Coming to camp has been a fantastic experience because "camp" is the place where we all feel normal for a week. Retinoblastoma children get to be in the majority. They get to experience privilege. They get to experience power. Confidence. Support. Every family that attends that week has been affected by retinoblastoma. Some children have both their eyes, having sucessfully treated their cancer with laser, radiation, or chemotherapy. Some children have lost one of their eyes. Some children have lost both of their eyes and navigate our sighted world completely blind. Each family has a slightly different story, but at the heart of our experiences is cancer in our children. Families from all over the country fly in to be together, to heal, to relax, and to be in the majority for a week.

One of the many things that I find interesting about coming to camp is that race, ethnicity, geography, socioeconomic status, and gender all seem to fade away. It's a place where people find that they are bonded by their experiences with cancer, rather than the identity labels we are faced with outside of this little heaven. For most of my year, I talk about race, diversity, sexism, etc., and for this one week, none of that even enters into my mind. We are all united by cancer. Our conversations are guided around the "cancer lens" through which we all see the world. And, for many of us, that cancer lens has given us a strong faith in the human spirit.

For 51 weeks out of the year, my daughter lives in the numeric minority. She is different than any other child she plays with at school and at home. She doesn't interact with any other children with a prosthetic eye; and, outside of the hospital, we never meet any other children her age with cancer. Camp is where she feels normal, where she is in the numeric majority. Camp is where she doesn't have to worry about dumb things people say when they notice she only has one eye. She doesn't have to worry about what people will say if there is goop on her eye or if her prosthesis happens to pop out while she is rubbing it. Camp is where kids talk freely about chemotherapy, about their "special eyes", and about their radiation. And, camp is where, if they choose, they don't ever have to talk about it at all.

Camp is also where my daughter learns how to interact with children who are Picture 1differently abled. She has made fast friends with two girls , Tacey and Mayci, who both lost their sight at around age 7 from reoccurances with retinoblastoma. Through their stubborness and their insistence that they not be perjoratively treated as "blind kids", Tacey and Mayci defy stereotypes. They defy preconceived notions about blind children. They set a new standard, a new "normal", and a new understanding of how high our children can soar if we give them wings rather than weights. Tacey barrel races horses in her homestate of Texas. Mayci plays softball on a sighted team (and, when given the option of having a "beeping sound" signal an approaching softball, she made the officials turn off the beeping because it was annoying her!). Parents and kids watch in awe as these two little blind girls actually lead each other around hand-in-hand through the camp grounds (which, yes, gives new meaning to "the blind leading the blind.").

At first, my daughter was afraid of Tacey and Mayci with their white canes and the blank, unresponsive look in their eyes (they both wear prosthetic eyes). But, Joli really wanted to make friends with these two girls. When the girls would walked by, Joli would wave at them and, in her smallest voice, say "hi." This happened a number of times, but I just watched to see how she would respond, react, and adapt to her method of "waving hello" to a couple of blind girls. Eventually, Joli grew discouraged and their un-reciprocated "hello" and said to me, "Mommy, I don't think I like Tacey and Mayci - they never say hello to me. I don't want to be friends with them." We had to explain to her that "they can't see you waving to them, Joli. You have to actually say 'Hello, Tacey and Mayci! This is Joli and I am in front of you waving.'"

Simple, right? Right.

We practiced saying, "Hello, Tacey and Mayci! This is Joli saying HI to you!" Joli tried that method the next time she saw Tacey and Mayci. They, of course, said "Hello, Joli!" and were so excited to make a new friend. Tacey and Mayci began to feel Joli's hands, her face, her coarse curly hair, and her glases. They also felt Joli's smile that was stretched from ear-to-ear in pure happiness! Since that day, the girls have been inseparable and even keep in touch during the school year. It was that easy....

This year, our second daughter was now old enough to experience camp with her sister. Of course, the first kids we saw when we pulled up to camp were Tacey and Mayci. Joli hopped out of the car, announced she was there and invited the girls to touch her -- feeling the change in her height, the shape of her new Hannah Montana glasses, and her tight braids that stretched from the front of her head to the back. Once the girls reacquainted themselves, Joli brought her 2-year old sister, Jada, over to meet the girls. When Jada first saw Tacey and Mayci, she kind of freaked out. They were touching her face, touching her hair, and "seeing" Jada with their hands. I watched Jada's body tense up and tears well in her eyes. Joli felt it, too. Joli, the now experienced 4-year-old-big sister, held Jada's hand and, in her most delicate way, explained what Tacey and Mayci were doing. Jada stopped crying. Jada stood still. Jada touched back.

Camp is special for me for so many reasons. This time around, though, it helped renew my faith in our children - for whom many of us parents/teachers/counselors/friends want to raise in an anti-racist world. As I re-read my post, I mentally substituted words related to blindness and disabilities with words that are related to race and anti-racism. It's amazing to me the connection between what we experience as a family with a differently abled child and as a family with race and ethnicity at our core. Through both lenses, we constantly learn and reinforce valuable lessons about treating people as humans.

We learned valuable lessons about making mistakes and finding ways to move beyond them. We teach and learn that sometimes we can control how we interact with others (saying "HELLO" to a blind person) and how sometimes we have no control over a situation (a healthy toddler being diagnosed with cancer). We learn that kids sometimes do know better than we do. We learn that kids make the same pre-judgements that we do, and that kids can also quickly learn how to challenge those pre-judgements. We witness that our children are more adaptable than we are. And, they are often more resilient than we are, too.

My daughters and their friends many not necessarily think about living in an anti-racist way. They just want to make a new friend. They just want to be treated kindly. They want to have the same opportunities as others have, and they truly want to share their happiness. Learning from my children gives me hope. On those days when I get so discouraged having encountered a racist person, a racist practice, and an unjust system, I think back to those first moments when my kids met Tacey and Mayci - how hard it was to feel left out and how easy it was to make a friend. They don't see one another despite their disabilities, they see one another in light of their disabilities. They have seen beauty in being different.

And they know that different is what makes them whole.

Taking Charge

Okay, I admit it. As a mom of a cancer survivor, the sister of a cancer survivor, and the niece and grandaughter to cancer victims, it's hard for me to admit this. But, here it is... I don't wear sunscreen.

Predictably, some of you just gasped. Others of you just said, "WTF? That's it? That's the suspense? Psshawww." But, given that cancer seems to be my best friend, one would think that I would be more careful with one of the most preventable babyoilcancers out there - melanoma. I hit my teens mostly in the late 80s/early 90s and spent many 10am-2pm hours sitting in the sun with, yes, baby oil. I even remember taking tin foil and placing it strategically near my face in order to reflect the maximum amount of rays possible. Hawaiian vacations - no sunscreen. Trip to Jamaica - no sunscreen. I never really burned, mind you, and always got a deeper shade of brown than I already was.

When my oldest child was born, I did put sunscreen on her - mostly because other moms (white moms who I hung out with in our old neighborhood) liberally applied sunscreen to the glowing white skins of their children; so, naturally, I did the same to my brown skinned baby. After she was diagnosed with cancer, we really didn't go out at all, so no sunscreen issue.

Yet, today, I applied sunscreen. Liberally. SPF 50+ waterproof. I could hear my 14-year old-tin-foiled-self laughing hysterically on my shoulder. After I applied it to my children, I covered myself in it. Twice.

What I'm leaving out here is that I'm waiting for the results back from my skin cancer tests. This past week, I had a mole removed, and the stitches that continue to itch me is a physical reminder that I need to be more careful with both the health of my children and myself. I'm waiting in anxious anticipation for the results - cancer? No cancer? Given my odds and the way that the cards seem to be stacked against my cancer family, I'm holding my breath....

But, this all did get me thinking about race (what doesn't, right?). Before writing this article, I got on the internet and started learning more about the OTHER genetic disease with which I have been recently diagnosed. Cards. Stacked. See what I mean?

I'm trying to find out the answer about connections with melanoma, this other genetic condition, etc., and I'm hitting dead ends. With other things that peak my interest -- recipies, good places to take my kids, good movies -- I only read the first few Google entries. Now, with my health, I find myself digging for answers. I want to learn more. I want to understand more. I want to be so well versed in my disease that I can answer any question that comes at me. Frankly, most of what I read scares the shit out of me is difficult. Some of the posts I read from others living with this disease are vibrant and full of inspiration. Others are full of dispair and isolation. Some say that they just do whatever their doctors tell them. Others say they have learned how to take charge - to be active patients.

In the end, who benefits the most? The passive participants or the active patients?

It got me thinking about conversations in race. There are some who come to the realization that RACE and RACISM exist -- a diagnosis, if you will -- and who take charge of their learning process. There are others who come to the realization and wait for others to educate them.  For me, it took stitches and anxiety to come to the table and take charge. I needed physical scarring to wake me up. What does it take for people to engage in the conversation about race? What kind of emotional scars to people need to heal and to create in order to move forward?

Are there benefits to both? Is one "better" than another?