Health, Pandemics and Paranoia

crossposted at Herspective: Current Events from a Mom's Point of View Common sense. It all seems to go out the window when someone is sick.

I was never really one for anti-bacterial sanitizers. I currently let my kids abide by the 30-second rule (after all, it was at my alma mater where students debunked the 5-second rule myth! Go, Camels!). I've even caught my middle child picking popcorn off of the floor and eating it. My sisters were horrified. I, on the other hand, take the approach of "Well, my kids will build a better immune system."

The only time I was truly obsessed with cleanliness and anti-bacterial supplements was when my oldest child was diagnosed with cancer. She had just turned 2-years old when we had to go into emergency surgery to save her life. During her 6 months of chemotherapy, I didn't even let anyone in my house if they so much as had a cold-weather induced runny nose. We had a Purell station by the door long before those wall-mounted gadgets were popular. We disinfected everything, sterilized anything that went into her mouth, and carried alcohol swabs like they were pennies in a purse. But, in all fairness, my daughter spent most of her days with a terribly low white blood count due to chemotherapy; and the common sniffle to you would be debilitating for her.

Yet, fast forward to this past summer. We attended a camp for children with life threatening illnesses. And, while none of the children were on active treatment, they were all somewhat immuno-affected. Camp was cold, rainy, and unseasonably miserable for a late June week. On the way home from Camp, a number of families reported being very, very sick. Word quickly spread that H1N1 had found it's way to the Camp and that, unfortunately, people were not adequately notified.

Some of the parents were pissed upset. "How could they allow people with H1N1 symptoms continue on at Camp?" Out of all the people in the world, one of the groups you hope to not be exposed to H1N1 is a whole bunch of kids who recently fought cancer. And, while some parents were appalled at the lack of notification, others (like myself) thought, "Okay, so, let's take care of our kids and move on." In addition to having my cancer survivor there, I was also there with my 2 year old and my 2 month old - so I certainly had plenty to worry about.

Camp is a lot of closed and confined spaces (especially when it rains 5 out of the 6 days). But, working at a college puts a new spin on it, too. Already, students live in such close quarters, share dining hall utensils, desks, door knobs, kitchen faucet handles, computer lab keyboards, etc. And, college students are notorious for not taking care of themselves -- operating on just a few hours of sleep, staying up late, using their "leisure" time making unhealthy choices.

As with most colleges, the place I work recently created a pandemic plan for if there is an outbreak of H1N1. There is encouraged "self-isolation", faculty have been asked to adjust their absentee policy, and the IT staff have vamped up there remote access capabilities. While the students will likely not change their behaviors (they seem to think they are invincible to anything, including H1N1!), it has been important for us to have a plan to protect our community.

While I admit to not being overly paranoid about the flu, I am in favor of the government mandating that a plan be in place for a few reasons. First, it does send a sense of urgency and importance. That, while most of our college students won't really care a heck of a lot, those who work with them do care. Second, it forces us to plan better. The government is asking people to plan. Planning, in the end, also saves money on health costs due to preventable spread of germs. And, given the enormous debt our country is in, a little cost saving is just what we need these days.

For those who are taking steps to plan and who are taking responsibility for the safety of their communities, the government's mandate doesn't affect them -- they were already doing it. As a parent, I would expect that my child's school/organization/activity should also have a plan for vaccination and quarantine. Just as we expect them to have a fire escape plan, an emergency outage plan, and a lost child plan, I expect them to have  pandemic plan. If my child's school did not have these plans, I would consider them negligent.

I almost my oldest child once due to an unplanned illness; I expect to keep her safe with well planned steps.

At the same time, I believe that widespread paranoia can be just as detrimental to our health (stressor) and to our planning. The flu is the flu. Yes, this is a Super Flu; but, we should all still be using common sense. I'm proud to know that our government is going to hold those who do not use common sense accountable for safety.

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?

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?

A New Approach

I recently found out that I have a medical condition that could cause tumors in my spine. Yeah, it's pretty bad. The funny thing is, though, that I've apparently had this medical condition from the day I was born due to a genetic condition that I was completely unaware of all these years. There are a whole host of other symptoms that go along with these spinal tumors, too -- brain tumors, retinal tumors, etc. spineSince finding out, I'm noticing my body feels different. I'm feeling aches in my spine. I seem to have a mild headache that won't go away. My vision has been blurry. I have noticed that my foot gets numb on occasion. God! Have I made it all these years with nothing, and now that I know, are all these problems from this medical condition? Just a few weeks ago, my "aching muscles" were likely a result of the 3 mile hike I went on with my family. My headache - probably from the caffeine I've been drinking to keep from falling asleep after a disrupted night. My vision - likely that I haven't seen an eye doctor in about 3 years. My numb foot -- yeah, I probably just sat on it too long.

But, with this new information, why is it so hard to ignore the medical condition to explain these aches and pains?

So, why is this on To Loosen the Mind, and why does it get me thinking about race and racism?

Learning this new information has made me incredibly uncomfortable - physically, mentally, and emotionally. In this waiting period between now and my full body MRI in a month, I feel rudderless. I feel like the rug has been pulled out from under me, even though, essentially, the rug was never there to begin with. I know that once I meet with my doctors -- the "experts" -- I'll feel better. I've slowly started to connect with other individuals who have the same condition as me, and I've begun to learn from them. I'm learning how they cope with the emotional turmoil. How they cope with the barrage of doctors appointments and scans. I'm learning how they keep positive despite the fact that they we will always be screened for tumors for the rest of our lives. THE REST OF OUR LIVES.

I've felt this feeling before -- this feeling of physical pain, mental confusion, and emotional anxiety. I recall back to when I first started to unpack my own racism. I remember those feelings of being challenged about my learned messages about people of color, about sexual orientation, and about socioeconomic class. I remember being corrected when I made a "ghetto" joke to a brilliant African woman in college. I remember actually arguing with a Black woman that "permed" meant "curly", and NOT straight like she thought it meant. Because of course, I was stupid right. She was one of the first Black women I had ever met, and yet I was the idiot authority on "perming."

The more I learned about my own privilege, the more uncomfortable I got. The more I read, listened to, digested, the more I realized I had been living in the dark - void of information. I had an awakening, and that awakening was painful. I sometimes wished I didn't know about the injustices that other people (including my own) experienced in our not-so-recent past. I wished I hadn't learned about how families were separated on purpose in order to create and maintain a power structure of superiority. I wish I hadn't heard about the ways in which men of color are disproportionately incarcerated, beaten, abused by a system that is supposed to protect them.

I imagine that's what it's like continuing through life thinking that we are all where we are solely based on merit and the willingness to try hard. It's so much easier to believe that lazy people stay down while determined people rise up -- all of them. It's so much easier to believe that we got to where we are because of our invididual efforts, and not because of a system of privilege.

I'm still struggling with whether or not I wish I hadn't learned about my genetic condition. Just a few months ago, I thought all these aches and pains were ... well.. aches and pains. In this time between now and my first set of tests, I question whether or not I have a tumor. I question whether or not I have a clot somewhere. I question whether my fatigue is just exhaustion, or if it's an adrenal problem.

Either way, once we KNOW, we have a responsibility. Once we accept that life isn't as simple as MERIT, and that effort isn't as simple as TRY HARD, and that freedom isn't as simple as FOLLOW THE RULES, then we experience discomfort. If we care, we experience physical pain, mental pain, and emotional pain.

We eleviate that pain by getting more information, by uncovering the truth so that we can work to create a different path and a more realistic set of rules.

I'll keep you all posted with the medical stuff. As far as the metaphorical stuff, I'm somewhat surrenduring to the pain and the paranoia. After all, it reminds me that there are others who have it both better and worse.

And, part of loosening my mind is putting myself in other people's shoes.

A Cancer Entry

Ben Underwood and Aquanetta Gordon A few years ago, my child was diagnosed with cancer. Thankfully, she was treated with very aggressive therapy became cancer free. But, that doesn't mean we don't think every single day about cancer. Every headache -- is it a tumor? Every stomach ache -- is it a tumor? Every fever -- is she sick again? For my friends with kids who are healthy, a headache is a headache, a stomachache is a stomachache and a fever is a fever. While we no longer run to the oncologist when this happens, I end up somewhat sleepless at night wondering if cancer cells escaped chemotherapy. I wonder if some wacky strain of radiation-resistent mutant cell managed to exist, find a new playground and spread.

People have even corrected me at times - "J doesn't have cancer. She H-A-D cancer." Technically, yes. But, my family and I continue to feel the repercussions of it. We never stop worrying. And, going to the doctor for check ups every few months reminds me that we certainly are not ever in the clear.

Not too long ago, a wonderful news story broke about a phenomenal young man named Ben Underwood. At the time, he was about 13 years old. He was blind from eye caner and developed the unique skill of echolocation - the use of clicks and "sonar like" listening to figure out where he is. He never used a white cane. He never used a guide dog or any assistance. Scientists were fascinated by his ability. Cancer kids heard of Ben and articulated how COOL he was! Parents embraced his mother, Aquanetta, for her insistence that her son was not disabled in any way.

Recently, news broke again about Ben. Unfortunately, Ben has developed cancer in the rest of his body -- about 10 years after he had initially been "cured" from cancer. According to the article, Ben is getting weaker by the day, and he will likely be on this Earth for weeks... months. Ben has told his mother that he is ready. He will go to sleep and wake up in Heaven.

The story breaks my heart, of course, for the many reasons that others are so touched by his life. But, as a cancer mother, it brings back a sense of reality that we will never stop worrying about every headache, stomachache and fever. That we know there may be a day when Tylenol or a good ice pack will not be enough.

I am reminded that it sometimes is never over. I am reminded that a struggle is a struggle - no matter how people want to tell you that it's in the past, that one is making too much of a matter, or that we all just need to think positively. Race or cancer. It's often the same conversation here.

Our prayers are with Ben and his family. We know that God has chosen a beautiful angel on this Earth and in Heaven.

AMA Apologizes for Racism

A few years ago, I used to watch "Desperate Housewives." I know it's an incredibly popular show - one of the ones where office mates gather by the water cooler at 8:30am to discuss the latest love lives and drama of the night before. I watched it occasionally, enjoying the craziness of motherhood and single life. But, a few years ago, activism in the Asian community rose up around a comment made by one of the characters on the show. While in a hospital room, one of the characters commented about the qualification of the doctor attending to her and stating, "I want to make sure (your diplomas) are not from some med school in the Philippines". The Filipino community erupted. Every doctor in my family, with the exception of my brother who is still in medical school, earned their diplomas in the Philippines. As Filipinos living in the Philippines, where else would they go? And, why wouldn't their diplomas be valuable.

Needless to say, my casual watching of Desperate Housewives ended. And, every time I hear the 8:30am conversations by the water cooler, I shudder.

Growing up within a medical family, much of our lives were spent in doctor's offices or hospitals. We would stop there on the way to church for my dad to see an emergency patient. We would stop there after church for another emergency patient, and to eat a cheap lunch in the cafeteria. When I was growing up, I would often go to the VCR to work out with my Jane Fonda aerobics tape, only to press <PLAY> and find footage of a surgical demonstration of cataract removal. Some nights, when I would go to kiss my dad "good night", I would find him at the dining room table with his surgical tools practicing his suturing techniques on a grape. Eventually, as I got older, I worked in my dad's office every summer to assist him with patient care.

In 2005, the hospital became an integral part of my life again when my 2-year old daughter was diagnosed with cancer. We went to a teaching hospital where the residents and fellows were from diverse backgrounds - both domestic and international. And, now, I envision my Filipino brother doing his rounds at the local teaching hospital.

Racism is an interesting dynamic in medicine. In the Washington Post, the American Medical Association recently issued an apology for the racism against African Americans:

The country's largest medical association today issued a formal apology today for its historical antipathy toward African American doctors, expressing regret for a litany of transgressions, including barring black physicians from its ranks for decades and remaining silent during battles on landmark legislation to end racial discrimination.

"The apology is important because a heritage of discrimination is evident in the under-representation of African Americans in medicine generally and in the AMA in particular," said the report's lead author, Robert B. Baker, professor of philosophy at Union College in Schenectady, N.Y., and director of the Union Graduate College-Mount Sinai School of Medicine Bioethics Program.

In many of my conversations with students - especially at a predominantly white college - we talk about representation, myths, inaccuracies they were taught, etc. In one exercise I conduct in diversity conversations, I ask participants to list the names of their doctor, neighbor, best friend, favorite movie star, favorite book author, etc. Most often than not, the list of names are all of white people. The next part is challenging students to expand their immediate circle by making intentional decisions around what movies they watch, what books they read, etc.

In every workshop, someone always says, "But, there aren't any Black doctors."

In challenging the students, we do get into the fact that you can likely find an Asian doctors from which to choose, there is certainly an over representation of white doctors, and unfortunately few Latino doctors, and even fewer Black doctors. The AMA Minority Affairs Consortium reports these figures:

Race/Ethnicity Number Percentage
White 514,254 55.8
Black 32,452 3.5
Hispanic 46,214 5.0
Asian 113,585 12
American Native/Alaska Native 1,444 .02
Other 12,572 1.4
Unknown 201,383
 

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Hopefully, this apology and recognition wakes people up to see the historic disparity and institutionalized racism that has existed in this field for so long. Recognizing that there is a problem is the first step. Now, I hope that the AMA actually does something to increase recruitment and retention of African American, Latino, Asian and Native doctors.