Notes From Supergirl

My Diary from the Trenches

Day 704


It has been quite a while since I have posted. I have been meaning to and just haven’t been able to find the time. Everything is going well. I am in a steady state with my blood counts – the red, white and platelet cells are all in the normal zone which is just phenomenal after all this time. My t-cells are slowly coming up and the doctor is weaning me off of some medications. After a couple of months of stomach trouble, we finally discovered that the culprit was the magnesium I have been taking. Many of the immune-suppressants lower your magnesium level so you need to take extra magnesium to stay normal. However, magnesium can upset your stomach. We cut the dose in half last week and I have thoroughly enjoyed a week of less stomach cramps and time in the bathroom! A gory detail, I know, but it’s all part of the recovery process. The good news is also that the stomach problems were drug-related and not GVHD. I’m still dealing with skin problems but that won’t go away until I go off of the medication that is most likely causing it. It is debatable now whether it is worth trying a new drug (that could come with it’s own issues) or just continuing to deal with skin irritation and an itchy rash. The rash is really starting to get old, but I also fear any new medicines because I seem to react to everything.

Okay, now I’m going to take a moment to rant about something. I debated about whether or not I would do this because I know that there are people who will read this and know what I am talking about. Let me preface this by saying that it isn’t meant to offend anyone. I just felt like if I had done this in person it would have caused a great deal of unnecessary tension. Additionally, my feelings about this are so strong that I needed time to compose myself and I wanted the time and space to lay out my thoughts in an educated, level-headed way. So here goes …

As you all know I have spent an enormous amount of time researching diet, nutrition and cancer treatment and prevention. I have spent most of my adult life eating a well-balanced – some would say over-the-top – nutritionally based diet of mostly organic food and avoided anything processed, fatty, starchy, you name it. I have also exercised and lived in a toxin-free home for most of my life. My parents were very conscientious of cooking nutritionally sound foods and exercising well before it was fashionable to do so. We didn’t grow up on fast food and milkshakes, though of course we had things once in a while. When my mother, a very healthy woman, was diagnosed with breast cancer, I went even further to do everything I could to be as healthy as possible. But my mother fought as hard as she card and still couldn’t beat breast cancer. And two years later I was diagnosed with leukemia. If you would have asked anyone in my circle of friends who you thought would get cancer, I’m guessing I would have been at the bottom of the list. I’ve never smoked, hardly drank and did everything you were supposed to do to stay healthy. Did I eat red meat? Yes. Did I eat cheese? Yes. However, ironically, I gave up most dairy a couple of years ago. But I still got cancer.

There is a movement that has existed for some time that feels strongly that diet and cancer have a direct correlation. If you eat the purest diet possible, you will either completely protect yourself from cancer; or god forbid you ever get it, you can be cured by simply eating better or smarter. There is a feeling that modern medicine is simply a farce, it is driven by financial support of industries like dairy farmers and pharmaceutical companies who would go out of business if the truth ever came out that cancer would not exist if people just avoided dairy products and ate purer foods rather than take medicine for cancer. I suppose that when I was first diagnosed with leukemia in June 2010 I could have rejected the idea of chemotherapy in favor of trying a stricter, healthier diet than I already was doing except for one problem – I probably would have died. My immune system was crippled and the timing of my diagnosis was critical for saving my life. But even after going through the last two years of treatment, I continued to make modifications to my diet following extensive research and making food choices based on the best educated guesses of the scientists, doctors, researchers, patients and nutritionists that I found. I consume occasional amounts of cheese or eggs, I still eat gluten and I have a little bit of chocolate every day. But I don’t eat red meat, I don’t drink milk, I down a green smoothy (kale, green apple, avocado, hemp seeds for protein) daily, drink lots of purified water and eat almost entirely organic foods consuming easily 7-9 servings of fruit and vegetables each day. Oh, and I do tons of yoga, run and meditate and have worked very hard to decrease the stress in my life. And I truly am much more at peace with myself. Yet, in October, my biopsy results showed that all of that was not enough and my stem cells began to morph into a danger zone.

By the miracles of science, I still had a chance to cure this disease by replaced my sick stem cells with new healthy ones from someone who was a perfect genetic match to me. And here I am today. Am I cured? I have no idea but can only hope so. But I’m not willing to take any chances so I continue to do the things that I think are best for my health. But I also know life is far too short and I refuse to spend any time stressing over the food choices I make because I know I am doing what I think is right for me. And I know I’m doing better than at least 98% of the population, though I don’t mean that in a way to put me on a pedestal. I simply mean that if you looked at what the majority of leading nutritionists and doctors, even people like Dr. Oz, feel is a perfect diet, I’m pretty darn close.

But if my point isn’t clear, let me clarify. I am offended and angered by those who negate the incredible advances we have made in medicine over the last 100 years and who would argue that medicine is unnecessary if everyone just learned how to eat right. It is a direct implication that I am somehow responsible for my cancer, or it’s recurrence, because I did not make the right choices in regards to what I ate. Yet, my friends who smoke, drink, do drugs (or have done them in the past) and eat red meat, dairy, fast food, limitless amounts of sugar and don’t exercise at nearly the level I do are healthy as can be on paper. Perhaps things will catch up with them, but perhaps not. I have a morbidly obese uncle (who will not be reading this blog!) who has lived off of pastries and deli meat for over 90 years! Sure he probably has diabetes and a few other problems, but he’s still here and has never had cancer and he’s over 90 years old. My 93-year old grandmother has followed a similar diet, though the last 20 years she has stuck to mainly grilled cheese sandwiches and an english muffin. I’m not sure if she consumes any vegetables. And she’s covered her hair with Aqua Net and Lysol-ed her home for as long as I can remember, a solid 30-40 years. My own father-in-law was in Vietnam and exposed to all kinds of chemical agents, has smoked through his entire adult life and eats fried sausage sandwiches and beans cooked in bacon (no offense Ginger!!!!). But for the most part, he’s fine and nearly 70. He laughs at my hippie diet all the time!

And then there are the children who get cancer. What did they do wrong? Was it because they were vaccinated or given formula instead of breast milk? What if they were given breast milk? Was it not good enough? Was it something their mother ate and it’s her fault?

Most of the young adults I have met over these last two years who have been diagnosed with cancer look at lot like me. They were healthy, very physically fit and generally ate well and took care of themselves. I know them now because they are triathletes and take their diet and fitness extremely seriously. Yet, many of them have had their cancer recur. One of the people that I have been most inspired by is Ethan Zohn from Survivor. He was diagnosed with lymphoma and went through brutal treatment for at least a year, maybe two and then went into remission. He spoke at an Ulman Fund event last year. He was an elite soccer player before diagnosis. I have read his story and I am confident he followed every dietary change he could to assure that he stayed healthy. He has also run races and marathons and championed for young adult cancer patients. Yet this fall his cancer returned. What did he do wrong?

Do I believe that some doctors make decisions based on pharmaceutical companies and the money they can make? Sure, of course. But I invite you to come to the University of Maryland and meet my doctor and others in the cancer center who support the integration of holistic and alternative healing practices through the Healing Pathways program. I invite you to ask my doctor what he thinks about my chances if hadn’t gone through transplant. I invite you to talk to him about diet and exercise and see how crucial he thinks it is for long-term survival. He will tell you it means just as much as medicine, but you can’t take medicine out of the equation. My own son, born 5 weeks prematurely, would not be here without science and medicine. It saved his life and it is saving mine.

We all have a lot to do to live healthier lives and reduce our negative impact on the planet. But before you simplify the connection between and diet and cancer, research the other side of the story. Yes, there are people who have been miraculously cured by simply changing the way that they eat. But there are many, many more who haven’t been. There is a balance, a critical balance, between holistic practices and science. Amazing medical doctors like Dr. Andrew Weil are awesome examples of those who are bridging the gap between Eastern and Western thought, but Dr. Weil will be the first to tell you that they each have something to learn from the other.

Leukemia is a very different cancer than a solid tumor cancer. In many cancers, scientists can understand why some tumors form. They can watch their growth and see that things like insulin can affect them. But leukemia doesn’t work like that. No cancer is black and white. If the rate of leukemia diagnosis are increasing, doesn’t it make you wonder what else is happening? It isn’t as simple as diet, or even environment. It may be both and it may be much more.

As I prefaced all of this with, I am not trying to offend anyone nor am I angry with anyone. I admit I’m very uncomfortable with the idea of posting this because I know it could be misinterpreted. But after the two long, difficult years I have been through (704 days!), I felt I needed to say this.

3 Comments to

“Day 704”

  1. Avatar April 23rd, 2012 at 4:22 pm Janet Thieme Says:

    Spot on! Just because something is a risk factor does not mean it is a cause. Correlation does NOT imply causation. It would be foolish to turn down a treatment that has been proven through double blind studies in favor of hearsay and conjecture.

  2. Avatar April 25th, 2012 at 9:33 pm Chip Says:

    Jess -

    I think people like to think it is just about diet because diet is completely controllable, and therefore that would mean you can control whether or not you get cancer. Especially for control freaks (and they know who they are… :) ), it’s always a nice illusion to think you can control something that scares the daylights out of you, like cancer, or what your teenagers are doing at 1 am on a Saturday night. But you can’t. With cancer, it is diet, genetics, environment, exposure to carcinogens, karma, luck, black magic, and probably some other stuff that hasn’t even been discovered yet. I firmly believe that medicine is still in its infancy in terms of what is really known about the human body and what makes it break. Treatments for tricky diseases are still part science, art, guesswork, and trial and error. All you can do is do the things to improve your odds and enjoy life in the meantime. Who is to say whether vices in moderation are worse than no vices at all? You gotta remember that some of the theories you see in books and magazines are grounded as much in the desire to generate a profit as they are in science.

    Health freaks will still get leukemia, professional athletes will still drop dead of heart attacks, and children will still get brain tumors. They didn’t do anything wrong. They didn’t deserve it. You can’t always be able to point at something to affix the blame or make sense of it. Some things can’t be explained, they just happen. Don’t waste time agonizing over it or resenting it. You just need the grace to accept with serenity the things you cannot change. Otherwise you will drive yourself, and more importantly Brian, nuts. :)

    But as always you expressed your point of view eloquently and in a thought provoking way.

    Time for a cigar….


  3. Avatar May 22nd, 2012 at 2:44 pm Jackie Says:

    Nicely put, Jess!