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Latest update in the cancer chronicles

December 19, 2013

the last few months have continued to keep me on my toes… here it goes….

-the day after school started, excited for a new year at my amazing school, I had a PET scan. The good news: there were no spots on any of my organs. The bad news: it showed five enlarged lymph nodes.

-my oncologist, after much persuading on her part, convinced me to get a biopsy. I honestly was not sure whether or not I wanted to know if they were cancerous. She said to me, that after fighting so hard for the past 17 months, I couldn’t all of a sudden close my eyes and pretend that nothing was happening. In the end, she reminded me it is better to have all the info we can, and then make educated decisions. Cudos to her, because for anyone who knows me, I am not usually easily convinced about anything:) I blame it on my Sicilian side.

-the biopsy,(which is not a fun day at the park) showed that the lymph nodes were in fact cancerous. After testing them, they found out it is the same cancer as the original. The jury is still out in whether or not that is good news. The good part- we have a huge tumor with the same cancer that they took out last December and can use for various testing for treatments. The bad news- the cancer I have is one hell of a son of a bitch, and apparently is not very effected by chemo.

-so here came the discussions:

-do we do more chemo? Which chemo?
Do we try a clinical trial? Which clinical trial? Phase 1, phase 2…new drugs, new combinations of drugs….
-or my idea…why don’t we wait and see? Now let me be clear, this in no way means I was deciding to do nothing, it just means I was deciding to try alternate ideas before going the traditional route. Here is a little factoid about chemo- it doesn’t cure cancer. (At least not colorectal cancer) It may, or may not, help keep it from spreading. It may or may not, make the cancer spread. In the case of my type of cancer, no one really knows the answer. So my thoughts were- if there is only a little bit of cancer and I feel pretty good, then why get myself insanely sick on the slim chance it may help me from getting sicker? This is not to say chemo does not help people, sometimes. But been there, done that. I am just not ready to go down that road again when it is really a crap shoot as to whether or not it will help.

– so here is a Little about what I have been doing:
-researching alternative therapies and clinics-such as the gerson institute,the common wheel center and some clinical trials with marijuana oil, and other natural supplements like co-enzyme q.
-a new level of herbs with my herbalist. Let’s just say I could rent a nice one bedroom in Chelsea for how much I spend on herbs a month. It ranges from cox2 inhibitors like turmeric(which help stop tumor growth) to b vitamins to liver vitamins to green tea capsules to citrus pectin( to help deter cells from sticking together) and about 55 other pills a day.
-I take two viles of hemp oil at night for both pain management and it’s healing properties( there are studies being done showing how it may cure certain cancers)
-acupuncture once a week
-yoga once a week
-mediation every evening
-food: smoothies with chia seeds, hemp seeds, bee pollen, spirulina, goji berries, almonds…organic, veggies, fruits, fish, some chicken and an occasional cheat meal:) oh, and red wine.
Juicing: 50 ounces of carrot juice a day, 18 ounces of kale, ginger and Apple. (I am actually turning a little orange!)

Genome testing:
One big step I have taken, after much research and tons and tons of paperwork, was getting my tumor from Sloan and sending most of it to a place called Foundation Medicine. They do genome testing, which, although rarely spoken of in mainstream media just yet, is the potential future of cancer cures. Here is a very basic description: they test your cancer and see what it is made of and then test it against every treatment out there, from aspirin to chemo drugs to natural herbs. The goal is to think outside the box and see what your particular cancer responds best to. The problem with cancer is that each persons cancer is truly unique- everyones cells mutate differently, even if it is just by a fraction of a percent, that difference in a cancer cell could cause one drug to work for someone and for it to fail for someone else. So the future is “individualized cancer treatments”. So this is my first step into that world-it’s new on the he horizon, and not a cheap world to enter, but worth every penny in my book.

November was an interesting month, I ended up in the emergency room with stomach pains. We were nervous something had ruptured, and thank god that was not the case. The scan we did was a little worrisome for my oncologist, but i then went to see my surgeon for more exams and everything was ok. To be honest, I think my body was getting used to the overload of carrot juice! In all seriousness, the official report was that my colon was somehow bunched up and not working quite right, but after a few days it felt much better.

On Monday, the 23rd, I have another PET scan. Depending on what it shows, we will decide how to move forward. Some time between Christmas and New Years we will also have all the results from foundation medicine. So fingers crossed we will be able to look at some new options. This all falls right in the middle of the holidays, but I plan to make the best of Christmas and New Years regardless of these tests. I will spend Christmas with my family and then a week in roatan ringing in the new year with some very special people in my life.

Oh..,how am I feeling people may want to know…..I feel pretty damn good. I do get wiped out pretty easily, and by Friday I am a wrap. I may go down to a four day work week but have been procrastinating making the change. I have occasional pains, for instance this week my back and legs are driving me nuts, but I think it’s from sitting in terrible traffic every day. I feel weak some days, but it think it is sometimes from lack of exercise. I have a little bit of a cold, and I blame that in the 32 four year olds who sneeze in me all day:) emotionally, I am one fucking tough cookie. At least most days:) yes, there are those pity party days, which are WELL deserved on occasion, but then I pick myself up and move on. Right now, I am filled with hope and fear about the next scan, but I think whatever comes my way I will be able to accept and work on a plan. Day by day, that’s all any of us can do. And today, well today is a great day.

  1. John Henry permalink

    There isn’t a day that we (Donna and I ) don’t think about you and how you are coping and doing. Thank you for sharing and you know you are in our prayers..J


  2. Kristin, thank you for sharing this. You are such an inspiration. I am so glad to have met you in Morocco and I am proud to be your friend! Happy holidays and see you in the new year! xo


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