FOOD FOOD FOOD!!!

This post is a two parter because I have two unrelated things to say about food.  Please feel free to read either post or both, it’s up to you.  I won’t know the difference!

Food Glorious Food! – This post is about my mouth sores and how they can affect your mood and eating.

Cancer Nutrition – This is about what I have done in regards to eating healthy and about how others always have suggestions for me.

 Food Glorious Food!

Eating is one of those things we seem to take for granted, like breathing.  You put food in your mouth, you chew, you taste, and you swallow.  No thought to the process.  But, that has not been the case for me for almost a month now.  I’ve had a love hate relationship with food during this time and sometimes things are almost normal and sometimes I’m crying in a half-eaten soft taco from Surf Taco.

The source of my distress: mouth sores.  UGH!  Mouth sores!!!  I had the little buggers during my first clinical trial but they would last a day, maybe two and then all would be right in my mouth and I was ok.  I had to cut out my daily orange juice and warm water with lemon.  Occasionally tomato sauce is out too.  This time I am getting chemo much more frequently and so they seem to come and then linger like a bad party guest.  Their new favorite places are one on each side of my tongue and one down my throat.  This makes eating excruciating.  The doctors gave me a numbing mouth wash but it only covers the problem temporarily and not very well at that.  I’ve been waging a war on my mouth with the mouthwash, a home remedy of water/salt/baking soda rinse, and Biotene mouth wash. I am now a slave to these rinses; rinsing after every meal and every two hours like clockwork.

I had a one month break from treatment between clinical trials during the month of May.  During that time I knew the mouth sores and lack of taste may return with treatment so I guzzled my orange juice and we went to every nice restaurant we could afford (sushi and buffets were still out).  I swooned while eating lobster, gorgonzola crusted filet mignon, calamari, and anything else I could think of.  It was paradise.

As you can imagine, not being able to eat, or eating extremely slow, or pushing through pain while eating can lead to someone being pretty unhappy and I’m sad to admit I’ve been there more days then I care to remember lately.  I want my sunny disposition back!  Thankfully my mouth war was able to push back enough of the pain so that I was able to slowly eat the wonderful meal at my wedding last Thursday and I’ve been carefully eating almost normally since.  I’m currently trying to shove whatever nutrients I can down my throat before the bastards return full force.  They tend to arrive a few days after chemo.  I think I am ready this time. 

 Cancer Nutrition

This is surprisingly controversial.  I don’t think anyone has a definitive answer, not yet.  What so many people don’t realize is that while many cancers share some commonalities, all cancers are different.  I’ve mentioned in previous posts that my type of breast cancer is different from other types of breast cancer and a drug like Herceptin which is widely used for a hormone positive breast cancer would be of absolutely no use to someone with my type of cancer.  Then again, one of the pills I am on is FDA approved for kidney cancer.  See; different, the same.  Cancer is a tangled web.  But back to food….

My love affair with Whole Foods started in 2003 when I moved to Washington DC.  I started eating organic (even when it was out of my budget).  I started doing my research on what I put into my body and consequently lost my freshman 15 (and sophomore 5 and junior 5 and senior 5).  I stopped using shampoo with sulfates, ditched the BPA in my water bottles and food containers, severely limited intake of lunch meats, did my monthly self-breast exam, exercised regularly and eventually even ditched the birth control pills. I pretty much thought I was “safe.”

Years later I find myself with stage 4 TN breast cancer and wonder “ok, what can I do now to help myself in addition to whatever the doctors can do?”  I had two months between diagnosis and my first treatment and I needed to take action.  I could not, would not sit around feeling the cancer spreading and thinking that I am quickly heading in the direction of death.  I bought books, I read the internet, and I spoke with a nutritionist.  Every one of the resources had something different to say – there’s not much you can do, cut out sugar, cut out alcohol, cut out dairy, cut out meat, vegan diet, vegetarian diet, Mediterranean diet, raw foods diet.  You name it, I heard it.  All that information can be dizzying because here you are in survival mode like you’ve never been before and everyone is telling you something different.  So what did I do?  I looked for commonalities.  What was it that every person/book/website said that was the same or similar across the board?  SUGAR! SUGAR SUGAR SUGAR!  They all seemed to think that sugar feeds cancer.  So I ditched the sweets, just like that.  No long goodbye, no brownie Sunday pig out, no dessert buffet.  I just cut them out, along with alcohol, cold turkey.  And you know what?  I didn’t miss it.  The stakes were so high I just felt like I couldn’t mess up.  (Did I have cake at my wedding?  Yes I did.) Here’s the big thing, when I cut out the sugar and the alcohol my pain started to ease up.  I was no longer in pain for minutes after sneezing, I wasn’t coming home from work and needing to take a pain killer each day just to make it through the night.  It was wonderful.  Do I think no sugar or very little sugar will fully heal me?  No, but I do think it has helped tremendously.  I haven’t gotten nitpicky with it.  I will eat cereal with low sugar, I will eat ketchup on my burger, and I enjoy natural sugars like fruit without hesitation.

So while I was happy and satisfied with my sugar free life for all these months, new stories come out, new people come in your life and with them comes a whole new slew of what I should and should not do.  Everyone means well, it always comes from a place of love.  I appreciate their love so much but with the love and suggestions come another round of heartache for me; am I doing enough?  Will I ever be doing enough?  The problem is this; I have stage 4 cancer, I don’t have time to jump on and off bandwagons to see what works.  I have chosen a wonderful hospital with the best doctors (my oncologists are specialized in breast cancer and in particular are doing research on triple negative breast cancer) and I have chosen a medical treatment plan that I am confident in.  If there is something that works within the confines of my current medical treatment plan, I am willing to add it.  I am currently on a phase 1 clinical trial.  This means I am closely monitored and I am limited in what I can take.  Do I need a Tylenol?  Gotta call the nurse and pharmacist first.  Do I want a glass of green tea?  Gotta call the nurse and pharmacist first.  Nope, not allowed green tea. 

And so I appreciate everyone trying to help and I am open to your ideas and the science behind them but please do not take offense if I say I cannot do it at this time due to the confines of my medical care.  I take every one of your suggestions and I research them and examine them and ask my doctors about them.  I am not ignoring you; I love you like you love me.