Why Hair Sucks - Episode 4 - Buying Shampoo

Now that my hair is growing back, I have to traverse the treacherous Shampoo Gauntlet of CVS.

30 MINUTES LATER...

The Article I Want to Read

HOW TO NOT GET CANCER

So, these days I'm particularly partial to articles and stories concerning cancer-causing foods and habits. Most articles I come across are step-by-step guides on how to not get cancer: what foods to avoid and how much activity you should incorporate in your life in order to live a caner-free life. I recently found this article about "How Not to Get Cancer." I was intrigued. I wondered, maybe there was something I did wrong in the last twenty-five years that lead to me getting cancer? Had I missed that one important component to living a cancer-free life?

A little side note: I'm a very rational person almost to a fault. In my world, for every action there is a reaction. You drink too much Tecate, you get a hangover. You sit next to someone who's sneezing and sniffling, you'll get a cold. You rub your kitty's belly, you're gonna get scratched. Cause and effect.

So when I was diagnosed with cancer, I instantly wracked my brain for how I could have contracted this disease. As a kid, we played in a canal behind our house - maybe that's why I got cancer. Or was it the navel weapons base behind my high school that triggered my cancer. Had I not drunk enough green tea? Had I drunk too much green tea? That time when my cat scratched me... did SHE give me cancer? To this day, I still wonder if there was something I had done (or not done) that had resulted in my cancer.

Before cancer, I would hardly give these "how to live a cancer-free life" articles a second glance. Post-cancer, my eye is constantly drawn to the word "cancer" like a moth to a cancerous flame. So, I read this "How Not to Get Cancer" article. In all honesty, it seemed more like a blog post, and I really hadn't expected any ground breaking facts. But I said, what the heck, I'll give it a read and see if I had missed anything.

Basically the article listed various things to do and things to avoid if you want to avoid getting cancer. A anti-cancer checklist. As I read it, I imagined my pre-cancer self checking off all the :

1. Get some exercise - CHECK!

I have exercised compulsively since I was in middle school. Pilates, jogging, swimming, hiking, you name it. I wasn't a marathon runner or an olympic athlete, but up until the week I was diagnosed with cancer I was jogging 10 miles a week. So, yeah, I "got some exercise."

2. Cut back on drinks - CHECK!

Even throughout college I hardly drank, and when I did I usually kept it to one or two beers.

3. Get enough Vitamin D - CHECK!

I LOVE being outside, hiking, swimming. I went to school in Santa Cruz and I lived there for five years, so I was at the beach as often as possible. And yes, I wore lots of SPF.

4. Quit smoking - CHECK!

Great. Never started.

5. Cut back on red meat - CHECK!

Not a fan, so I don't really eat it.

6. Go organic and avoid fast food - CHECK!

Yup, I'm there. I'm a terrible cook, but I cook 90% of my food, which I buy from the local organic grocery (Yay, Santa Cruz, CA). As for fast food, I haven't even looked at a McDonald's or Burger King since I was in Middle School.

7. Get lots of antioxidants - CHECK!

When I'm not drinking water I'm drinking green tea, and I snack on berries.

(There were a few other things, like don't grill your food too much and be on the Pill - both of which were strange, but I checked off.)

At the end of the article, I realized, "Well, that's interesting. According to this checklist, I shouldn't have gotten cancer." The thing that really bothers me is that this isn't the first article I've come across that has touted the key to avoiding cancer. I guess there's a part of me that will always be stamping her feet, complaining that "I did what you told me! I avoided everything bad for me. I exercised. I was at the peak of physical health, and I still got cancer!"

When I received my cancer diagnosis, I was devastated. My body had literally let me down. At twenty-five, cancer was not in my vocabulary. "Sickness" and "illness" wasn't even in my vocabulary. I never got sick (I've probably had the flu once in my life - although I faked being sick a lot so I could get out of school, but that's a different issue...) I felt betrayed. I had put so much effort into exercising, eating healthy, taking immune system boosting vitamins and supplements, and what does my body go and do? It gets a bunch of cancer! Talk about ungrateful.

I'm not saying that exercising and eating healthy will not prevent cancer. Some cancers can be directly linked to bad diet. SOME cancers, not all. The biggest issue I have with all these "How To Not Get Cancer" articles is that they seem to make one huge generalization: that cancer is one disease that can be confronted and defeated merely with a change in eating and lifestyle habits.

ONCOGENE

In reading The Emperor of All Maladies, and during my personal experience with my own cancer, I learned that cancer is very complicated. If all cancer was the same, leukemia and breast cancer would be treated with the same drugs and chemotherapies. However, that's not the case. There is not one single "strain" of cancer, as there is a different strain of the flu virus each year. (However, in the early days of cancer treatment, back when people thought cancer was contagious, there was serious money poured into the quest for the "cancer virus.")

My friend, who had breast cancer, had a vastly different treatment plan than I did. In fact, when we compared our chemotherapies, we only had one drug in common. Each cancer is a unique little bastard. For one, cancerous tumors form in a localized place in the body before metastasizing into the blood stream and spreading. Leukemia is just the opposite: it starts in the blood stream (produced right alongside your red blood cells and white blood cells), and then takes up residence in various places in the body. There are at least 50 common types of cancer, from tumors to sarcomas, to blood cancers, and within each type of cancer there are dozens of variations.

Just as each human has her own genetic code that dictates who she is, each cancer has a specific genetic code that dictates how aggressive it will be and how it will behave. (For example, the presence of the Philadelphia chromosome would have made my cancer more difficult to treat. There were at least two other genetic markers that my doctors looked for to determine what kind of treatment would work for my specific cancer.)

We all have cancer genes in all of us called oncogenes, genes capable of causing cancer. Like all genes, oncogenes can be turned "on" and "off" like a light switch. However, unlike normal genes, oncogenes, once turned on, do not have the ability to be turned "off". "It provokes unbridled cellular proliferation in a normal cell." And thus cancer cells begin to multiply uncontrollably, triggering more and more mutations in genes. (One study showed that one type of breast cancer in one woman was the result of as many as 127 mutations.)

Read it: Emperor of all Maladies, the biography of cancer and cancer treatment history. Scientists are currently in the process of developing the cancer genome - think of the Human Genome Project but for cancer - and mapping all oncogenes called the Cancer Genome Atlas. The work it will take is said to be the equivalent of 10,000 Human Genomes. Check out this website for tons of articles and information about this immense project: http://www.genome.gov/17516564.

(I can't speak to holistic therapies. The cytogenetics of my cancer cells showed that my body was going to continue to produce cancer cells no matter what, so a transplant was my only option. I don't know how to do a transplant myself, so I stuck with the hospital and doctors to help me out.)

THE GREAT SUGAR DEBATE

I'm also troubled about another sound bite from these "How Not To Get Cancer" articles: "sugar is food for cancer."

I'm not disagreeing with this. There is way too much sugar in food these days. Yes, there have been tests with cancer cells and how they react to glucose. However, I recently went to a survivorship conference where one of the speakers (Natalie Ledesma, MS, RD, CSO Smith Integrated Oncology & UCSC Comprehensive Cancer Center), specifically addressed studies about sugar and cancer. She really opened my eyes not only to the misconceptions about sugar and cancer, but also about how difficult it is to perform studies surrounding cancer. Basically Ledesma said that there have been hundreds of studies about how sugar interacts with cancer, and for the most part they've all been disastrous. 

It is very difficult to study the effects of sugar on cancer in living patients. In a petri-dish, it's much easier to see how cancer reacts to glucose. However, cancer patients are not petri-dishes, and each cancer acts differently in each individual.

In the end, the answer to the sugar question was this: there's really no definitive evidence that sugar causes cancer - HOWEVER, there are NO studies that show that it prevents cancer. So, avoiding sugar is just an all around good habit for a healthy life.

I guess that's what I would like to see in this dialogue about "how to not get cancer:" a change in the way we perceive our bodies and our individual definitions of the word "health." Let's face it, no one plans to get cancer, but odds are most of us will get cancer at some point in our lives, whether as a five-year-old, twenty-five-year-old, or a ninety-five-year-old. If you don't get cancer, there most likely will be a time in your life when your body fails you, whether because of a broken leg after an accident, or hereditary issues. 

We can't predict the traumas that will occur in our lives. There are many things we cannot control, from the aggressive genetics of our cancer to the crazy drivers on the freeway. However, there is one thing we can control, and that is what we put in our bodies, whether that is good nutrition and plenty of exercise. 

A SHIFT IN PERSPECTIVE

This is the article I want to read. We need to begin to view our bodies as not a physical guarantee that there will be a future, but as an investment IN the future. Take this example: Here in California, no one can predict when an earthquake will strike (despite so many studies), but we prepare as best as we can in the event the Big One occurs. We retrofit our buildings so that they will sway with the waves and roll with the punches.

That's how we need to regard our bodies. We should be investing in our bodies, strengthening them with good food and exercise, not so we can look hot in a bikini or bench press 500 lbs, but so that when our own personal earthquakes hit (and sadly they will hit), we are strong enough to roll with the punches. I know for a fact (my doctors have repeatedly told me) that one of the major reasons I am a cancer survivor today is that my body was healthy enough to withstand cancer, chemotherapy, full body radiation, a transplant and a myriad of other symptoms of treatment. 

When I was diagnosed, cancer was my only health issue and that's how it should be for everyone. It's not unheard of for patients to not be able to treat their cancer because of other, unrelated health issues. For example, if you have high blood pressure, you might not be able to handle some types of chemotherapy, decreasing your chances of efficiently fighting your cancer. If you can help it, you don't want to have to deal with respiratory issues, high blood pressure, high cholesterol, among other things in addition to daily chemo injections and radiation treatments.    

Only those who have suffered physical trauma in their lives can truly understand what its like to lose the use of your body. I went from jogging daily to having my mom carry me to the bathroom, bathe and dress me (even wiping my ass on occasion). It was almost impossible to withstand chemotherapy and treatment even at in the peak of my health and youth. I shudder to think how much worse it would have been had I not been in such good shape from the beginning.  

I know that we're close to finding cures for some cancers, but we have a very long way to go, medically, socially, and politically before we can begin to eradicate cancer from the world. Until then, invest in your future as best you can. Eat right, exercise, and educate yourself so that you're prepared for that Big One, whenever it comes, if it comes at all. Only then will you be able to stand among the rubble as a survivor.

T-Rex DNA

So this happened:

I probably stared at that spot for longer than I'm willing to admit. I found them a little while later, in exactly the spot where I was looking. 

This was probably what my keys saw. 

I'm pretty sure all that radiation treatment awoke some dormant T-Rex DNA in me.

Sunshine!

New Normal - Morning Routines

Things have definitely changed for me. It will be a while before I can resume the normal daily activities that I once took for granted, like waking up at a reasonable hour. In my mind I'm a normal 26-year-old, and I make plans like a normal 26-year-old. However, my body feels as if it's 86-years-old and often has other plans.

Plan: Morning Wake Up

Reality: Morning NO!

Plan: Exercise!

Reality: Exer...sighs...

Plan: Gourmet Breakfast!

Reality: Fine... I better eat something...

I guess nothing ever really goes as planned.

49ers Visit Stanford

So, this post has been a long time coming. But hey, cellularly speaking I'm only 7 months old so it's amazing I'm even writing this right now.

Back in June of 2012, the 49ers came to Stanford Hospital to to raise awareness about a rare heart disease, and to also visit some of the cancer patients. I was back in the hospital for my transplant. It had been about a week since my stem-cell/bone marrow transplant and I was in the throes of pretty gnarly mucocitis. It's a common side-affect of intensive chemotherapy, full-body radiation, and a bone marrow transplant.

It's okay if you have no idea what that is. I hadn't any idea even though they warned me about it. I literally prayed to the universe that I wouldn't get it. After that I was pretty confident I would be that one patient who didn't get mucocitis.

But of course I got it - and really bad. I mean, really bad. Even some of my nurses said it was really bad, so you know it was bad.

Basically what happens when you get mucocitis is you develop hundreds of sores all over your mouth, tongue, down your esophagus and even in your stomach lining. Just imagine the pain from chewing a mouth-full broken glass and jagged metal and swallowing it - and then multiply that pain by 100.

I developed mucocitis right away, and for three weeks I couldn't eat, speak, drink, or even swallow my own spit without experiencing excruciating pain. I was in so much pain that my doctors had to keep upping my pain medication, until I was getting constant drips of morphine and fentanol (another powerful opiate). The opiates, however, didn't do much except provide me with a constant stream of confusing and slightly amusing hallucinations... but that's another story.

Needless to say, when the 49ers came to the hospital on June 8th, I had been living off liquid food, hadn't been able to speak, and was hallucinating about toddlers and spiders. So, when my nurse came in that morning to tell me Alex Smith was going to be visiting me in my hospital room, naturally I had no idea what she was talking about. Apparently a lot of the patients were going out to the field to meet some of the players, but Alex Smith heard that I couldn't leave my room due to my transplant, and he decided instead to come see me.

When my nurse told me this, my first thought was: "Who are you and why am I the only one who sees that creepy lady in the corner of the room?"

When I realized I hadn't asked this aloud, my next question was: "Who's Alex Smith?"

Of course, it came out: "ooofffss owssphth phlsssth?"

To tell you the truth, I hardly remember that day. Morphine does crazy things to your sense of time, in that time ceases to exist. I know that it was during the day, since the window was lit up with what I can only assume was sunshine (unless there was a big-rig with it's high-beams on outside my room, which, at that time, was just as plausible), and then suddenly there were several people in my room, including my sister and dad, two camera people, a couple of my nurses, one of my doctors, and this really tall, good looking guy wearing a red shirt with an 11 on it.

I remember thinking: "Hey, this guy's not wearing his mask." (Everyone who came into my room had to wear a mask.) And then when I saw that no one else seemed to care, I decided I'd let it slide this time. After introductions, I quickly realized that I knew nothing about football and nothing about Alex Smith. (Apparently he's a quarterback...).

I also remember apologizing for the state of me: I hadn't showered or changed my clothes in a couple days, my face was swollen from mucocitis, and my bald head was as shiny as a flesh-colored balloon. But soon none of that mattered. Suddenly, I couldn't... stop... talking...

Whenever I get nervous or embarrassed I start blabbering until someone else starts talking. Add my nervous blabbering to my hallucinating mind and my swollen mouth and the result is a slurring, disjointed, lengthy account of the last nine months of my life with cancer. Alex Smith listened to me blabber on and even laughed at my jokes - so he's gets an A+ for life. Coolest guy ever.

About a month after his visit the gravity of his visit hit me: I had met Alex Smith, quarterback for the 49ers. Woah. I hadn't met anyone famous in my entire life. (I get start struck when meeting people who've met famous people.) Of course the one time I do meet someone famous I was a slurring mess (and I probably didn't smell too great either). Worse, I hardly remembered the visit. Fortunately my sister had recorded it on my cell phone. I watched it and was horrified. Not only had I looked like a slobbering mess (is my head THAT big?!), but I had no idea what the hell I was talking about!

"Why didn't you shut me up?" I asked my nurse after I found out that I'd spent the entire visit blabbering incoherently at Alex Smith.

She said, "It was the first time you'd spoken in two weeks! I'm amazed you were able to talk at all." Then she added, "And, yeah, none of us knew what the hell you were talking about."

Oh well. It made for a memorable visit on my end and on Alex Smith's end. This would not be the end of Alex Smith and the 49ers' kindness, about which I'll be blogging another time...

Here's a link to the story about the 49ers Push-Up Contest at Stanford (which was the reason they came out there), (I'm in minute 2:25!): http://www.49ers.com/media-gallery/videos/49ers-Push-Up-Challenge-at-Stanford/7b8473cf-9201-4265-bbb8-83b61b2cc690 

Alex Smith's visit was one of the few things I remember from my weeks in the hospital, post-transplant. And it pretty much made my whole year!

Damn... I should have asked for his autograph...

Meanwhile...

Somewhere, on a typical Saturday night... 

Meanwhile, I'm refilling my pill box for the week.

Saturday nights are now officially Pill Day. I spend a good hour unwrapping 56 bean-sized, individually packaged pills: 

It's great fun, and I'm in bed by 10! Plus, the wrapping makes great kitty toys!

Except when this happens: