Monday, December 31, 2012

Living with Lynch - Or how I learned to stop worrying and love my cancer gene

Tomorrow we welcome in 2013, and while 2012 had a lot of good that came with it, I couldn't be more excited to start a new chapter. No gimmicky resolutions for me... no 15 pounds to lose or bad habit to kick... I'm just making a vow to take my health fully into my own hands in a way I haven't before. Mostly because now I have to. I never wanted to make this blog that personal, but my decision to focus on my health will be greatly changing the way I cook, and much like when I started the blog to encourage myself to cook more and try new recipes, I feel that writing this all down makes it a real commitment.

In November of 2011 my mom, already a breast cancer ass-kicker (a much better title than survivor, if you ask me), was diagnosed with uterine cancer. She had surgery to remove the cancer and through samples taken during that surgery, they discovered she also had ovarian cancer. Ovarian cancer is scary. Period. It's virtually asymptomatic until later stages, and it can be quick to spread. They caught it in my mom at stage one. I think of my mom's uterine cancer as the world's shittiest miracle, because had she not had the easily detectable in early stage uterine cancer, they may have not found the ovarian cancer until later, where survival rates are low and things are just all around suckier. She went through chemo, lost her hair, kept her sense of humor and strength, and has been in remission since September 2012.

My mom turned 50 this December. As you can guess, when a healthy woman under 50 gets three types  of cancer over less than five years, the oncologists start looking into "why?" This lead to my mom being tested for various cancerous genes, including Lynch syndrome (also known as hereditary nonpolyposis colorectal cancer). 

The average person has a 2% chance of ever having colon cancer, a 1.5% chance of developing uterine cancer, and a roughly 1% chance of being diagnosed with uterine cancer in their lifetime. People with a Lynch syndrome gene have an 80% probability of getting colon cancer in their lifetime, an 80% probability for endometrial or uterine cancer, and 10% probability for ovarian cancer. 

My mom tested positive for a Lynch syndrome gene known as MSH6, again another shitty miracle. The MSH6 markers are the soft rock option in the Lynch family of genes. Only 7-10% of those diagnosed with Lynch syndrome have this marker, and it's probable rates of cancer are 10 - 20% for colon cancer in women, 26 - 44% for endometrial, and overall a 40 - 65% chance of getting any Lynch related cancer (ovarian, stomach, bowel, kidney.) 

The range is wide because studies are still working the numbers for specific gene mutations, but overall they're much better for us MSH6 folk. If a parent has a Lynch syndrome gene, there's a 50/50 chance their children will inherit the gene. So I say "us MSH6 folk" because I was tested in early December and found out I was positive two weeks later. My life has completely changed, but genuinely for the better. I feel empowered about my health for the first time and I've received a wake up call to take better care of myself much earlier in my life than most people do. I really see this all as a lucky thing...

One reason they think the numbers are so much better folks like me is because the MSH6 gene has a "helper protein" that helps pick up the slack for the messed up gene and slows the growth of cancer cells that is usually sped up so quickly in other Lynch syndrome genes. Essentially that's what is happening in my body compared to they average persons - We all have a gene that is supposed to be repairing and cleaning up our cells and slowing the growth of cancer cells in our guts, and mine just doesn't. It can't help it. It was born this way. It's doing it's best. And for what it can't do, it's got a protein buddy to help it out. Which is really my life philosophy any way. I am who I am. I've got what I've got. I do my best to do well in this life and try to surround myself with people like my family, husband and friends who make me better than best collectively. Instead of one helper protein, I've got dozens. I'm lucky. 

What this means for my health overall, is I've got to be in tip top fighting shape so my body can do it's best to fight the growth of cancerous cells over time. This means big changes in my diet that I'm resolved to adopt in 2013 and beyond.

  • Cutting out white flour and refined sugars as much as possible because the glucose they produce is like a Big Mac and milkshake for cancer cells... they'll just make them bigger and badder. It's whole grains, sour doughs and basmati rice for this girl. 
  • Reducing my intake of alcohol to less than seven units a week and always having food with drinks, again to avoid an insulin spike that cancer cells just love and to allow cleansing organs like my liver to focus on cancer fighting instead of beer filtering. 
  • Completely eliminating, as much as possible, processed foods and fast foods. My body does not need chemicals and stuff it doesn't know how to digest. I don't need to confuse that poor MSH6 gene any further or give more work to its already frazzled protein buddy. Taco Bell, I loved you, but we're through. 
  • After 10 years together, Diet Coke and I are now divorced. It wasn't amicable. It was really hard. I don't want to talk about it. 
  • Increasing my intake of vegetables, fruits, vegetable proteins like beans and lentils, and omega-3 rich foods like fish and nuts. I'll be taking a fish oil supplement as well, but nothing beats the nutrition of the real thing. 
  • Switching to organics and grass fed, free range products as much as possible. It might hurt my wallet a little now, but I think it will be worth not being able to buy as many new dresses a year to get an extra 10-20 years of healthy life. 
  • Reducing my intake of red meat  to 12 oz or less a week and overall eliminating processed and smoked meats except for special occasions. RIP, Slim Jims.
I've also got a full team of awesome experts at UIC, and I'll be getting annual colonoscopies and all kinds of fun extra testing that is well worth it to know where I stand. I am not someone who is skeptical of Western medicine. I firmly believe in screening and prevention, in chemo and radiation, in pills and elixirs, but I also think ignoring your diet and environment and just hoping medicine alone will keep you healthy is not the way to go. An ounce of prevention, a pound of cure, etc.

I'm currently reading Dr. David Servan-Schreiber's Anticancer: A New Way of Life and Jessica Black's The Anti-Inflammatory Diet to learn more about the links between cancer and diet, and I've read countless papers on Lynch syndrome families and their diagnosis patterns. My DNA is now on file in a study so they can learn more about MSH6 cancer patterns in the future. I might have to get a voluntary hysterectomy in my 30's after I've popped out some kiddos. I might not. Who knows? But what I do know is I that I will do everything I can to give myself the best life I can with the tools we currently have.

Here's the flip side to this coin - stress. I'm also vowing not to obsess over this "cancer free" way of life. After smoking and poor diets, a leading environmental cause of cancer is stress. If I obsess over every morsel I put in my mouth, if I'm crying in the corner at a party because I can't have champagne or cake, if I told myself I could never have real pizza again, I'll be a withered basket case who never had any fun. That's not good either. I'm not going to turn into a food nun. I'm just going to get a better balance going. Simply put, I've had to accept that my moderation is different from other people's moderation, and that's okay. 

The biggest way to do this life change in a positive way for me is going to be trying new recipes, experimenting with foods I've never cooked with before like bulgar or stevia. It's going to be out of something I find joy in that I can share with other people. You're going to see a renewed emphasis on health over calories on the blog. You're going to hopefully see a lot of newness in general. 

My dad was diagnosed with non-Hodgkin's lymphoma in October 2012. We had one whole month of cancer-free-ness is my family this year. My dad started chemo in early December and I've gotten to go home twice since then. He's going through it in much of the same way my mom did, with a stiff upper lip and a strong sense of humor. 

When I first came to visit them in Nashville the entire kitchen was stuffed to the ceilings with gift baskets and baked goods. This is the best part of cancer - the people who come of the woodwork to send their love and support, people that maybe you've forgotten to call for a few months or who you thought moved on and forgot about you. And sometimes even if the sugar in those cookies your neighbor brought over or the nitrates in that bacon in the casserole your co-worker sent you home with aren't the best for you, it doesn't matter. It's good for your heart and soul in a completely different way.

Food is as much about love and breaking bread together as it is about fuel, and I will never forget that. So my dad finishes his chemo with ice cream. So my parents keep reminding me through their living example of how important love is and what it really means to love someone unconditionally through the good and the bad. And sometimes the good includes some decadence like a two week trip to Italy where you eat a metric ton of white flour pasta and fresh cheese, much like my parents took before my dad started chemo. Through it all, my family just keeps pressing on, hoping for the best and laughing and hugging each other along the way, because that's all we know how to do. 

Bring it, 2013. I've got people I love and a crapload of kale to help me face whatever you're ready to throw at me. 

1 comment:

  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?