An update on Des

It’s been two weeks since I learned about Des. And yes my desmoid tumor now has a name. After learning that everybody else names their lumps and bumps, I had to join in. And I know I didn’t get very creative, but I like the name Des, it just suits her.

Learning that I didn’t have a malignant cancer was of course an enormous relief. I’ve got to tell you though, that learning to deal with a desmoid tumor one on its heals is still pretty tough. Especially when my natural tendancy is to feel guilt for anything less than the worse case scenario after losing beautiful Nicole. I mean, how can I complain about my tumor when she lost her life?

I spent the first 3 days after my diagnosis reading everything I could find at the hands of Google. In minutes I was connected to the Desmoid Tumor Research Foundation and in hours, I was accepted as a ‘friend’ of the ‘The Desmodians’ facebook group. On Facebook I discovered a whole community of afflicted sufferers and t’shirts with the slogan ‘desmoids suck’.

Overwhelmed by lots of horror stories, I will admit I was in a fog of fear for days. The truth is there are many people, including plenty of kids for whom desmoids are frighteningly debilitating. These rotten nasties can grow anywhere in the body and sometimes they choose places that really mess with your insides. Then the really tough part can occur – the loss of said parts. On Facebook there are missing rectums, ovaries and even lost limbs. There are stories of lives arrested in the wake of recuring desmoids, people unable to work, many on long term chemotherapy and this is a small fraction of the extent of things.

At this point, I realized I needed to take my own best advice. That is nobody knows what’s going to happen in the future, nor can alter the past. We only ever have today and the best approach is to make every one of them count. I need to get out of Facebook, where I’m sure the worst effected find solace in each other and live right here and now where all I know is I have a Desmoid in a location that is not going to create any life threatening (nor even major quality of life) issues.

With this in mind I also changed direction from misery to action. I began project attack the Des with a vengeance. I went on a hunt for every bit of holistic, self empowered support I could find. I read about diets, oils, electrodes, and special ‘magic’ healing water called ASEA. I went back to Facebook but this time looking for answers. And I got some. It turns out there are definitely positive results to some of these approaches. In particular using food as medicine was a recuring theme.

Within three days I had a new plan. This time (unlike with my breast cancer diagnosis) my treatment is not being left to the medical experts alone. This time, I’m forming a bigger team to take action, with me as the CEO. I’m going to embrace both the traditional practitioners AND the integrative / functional therapists. And we will attack Des (or starve her) from every direction.

Since then I have taken heed of much of the advice I have been given by cancer fighters and experts like Kris Carr of Crazy Sexy Cancer and the Gawler Foundation.  I have adopted a diet that is low in estrogen and skewed heavily away from acid to alkaline. This combination means I am meeting an almost vegan diet. While Kris & Ian don’t advocate  for either, for now I am still eating some fish and cage free eggs. I sought the help of a dietician to ensure I didn’t deplete my energy sources whilst training for the marathon and that’s what she recommended. Kinda strangely I feel guilty eating them though. Who ever said I was an all or nothing kind of girl was right!

I was also recommended finding a functional medice praticioner. These are Doctors who have decide to expand and embrace holistic & integrative medicine practices. I have found a couple but I have to admit that I’m dragging my feet a little on this front. Primarily because of the price ticket – as in $650 a visit. I’m on the fence, let’s just see which way I jump.

From a traditional medical POV I have seen 3 Oncologists thus far and had 3 different opinions on next steps. From do nothing to surgery and start with chemotherapy. I have more appointments in 10 days time and it’s not until after that, that I will make any decisions. And yes I will decide, based on what’s right for me, not the other way around.

In the meantime, I am so excited to be running the NYC marathon THIS weekend. Despite this whole health palavar, I am feeling incredibly fit and ready for this race. And I’ve already raised over $8,000 for MSKCC. I’m going to try and get to $10k in the next 6 days – why not aim high!  By the way, the irony is not lost on me that while training for the marathon and raising money for MSKCC, I ended up needing their services. What can I say, I’ve always been special.  If you haven’t already, jump on my charity page and help us find a cure for cancer (and all it’s nasty off siders).


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