My health - not so good right now.

I have followed a ketogenic diet for eight years. I slip out of ketosis from time to time, but for the most part, I am in, at least minimally. This means that I use fat for energy rather than carbs. Although I eat about 25 to 30 grams of carbs a day, which my brain needs, for the rest of my energy needs my body uses fat, which it converts to ketones. Those ketones act like carbs in terms of providing energy. While the brain needs a little pure carbohydrate, it is interesting that most people, including me, say that a low carb diet helps them to get rid of "brain fog." So I guess a little is great, and too much is NOT!

I have read enough about the effect of carbs on malignant tumors that I felt that I was hedging my bets with my low carb diet, since my family has had its share of malignancies. Ketogenic diet = insurance policy against cancer, or so I thought.

I have just been diagnosed with a soft tissue sarcoma, called a GIST. In layman's terms, I have cancer, or pre-cancer because the cells are still too small to be picked up in a test. But they are there. There is no such thing as a benign GIST. 

Mine was diagnosed locally as 3 cm, considered very small. They did another test locally and told my daughter it was 4 cm. When I talked to the surgeon at IU, Dr. Schmidt, he said surgical removal would require taking out nearly half of the stomach and part of the esophagus. Not good news. Chemo might shrink it into a more manageable size, or sometimes even eliminate it entirely. He ran another test, as the test from St. Joe Med Center was not done properly, and it showed the small intestine in great detail but missed most of the stomach (waited too long after I drank the barium shake to run the test). He ran another CT scan Monday evening.

He called me on Tuesday and we played phone tag until mid-morning the next day. I got hit with very bad news. It is not 3 cm, not 4 cm, but 6 cm. Surgery would require removing the stomach in total. I was gob smacked, for lack of a better term. He had already lined me up with an oncologist, so I went back down Wednesday to see him and look at alternatives to surgery, at least for now.

On Wednesday, I spent two hours listening to my oncologist, Dr. Rushing, at IU Hospital in Indianapolis. He explained in detail what the term "cancer" means in biological terms. Most people use cancer interchangeably with malignancy. They are not the same thing. Malignancy is the top level term, and cancer is one of several subsets of malignancies. "Cancer" refers only to malignancies of organs -- cancer of the lungs, cancer of the liver, cancer of the colon, etc. My tumor is in my stomach, but it is not cancer OF the stomach. The malignancy is in a soft tissue tumor that has planted itself firmly into the wall of my stomach. It can occur anywhere in the alimentary tract, but usually in or on the stomach.  It is part of the subset of malignancies called "sarcomas." They are soft tissue tumors, and they occur as GISTs (what I have) or tumors of fat, muscle, bone, cartilage, tendons, vessels and nerves. Fortunately, they are all less apt to metastasize. If they do, GISTs go to the liver the most often, rarely to the lymph nodes. 

The oncologist and I agreed that my best course of action is chemotherapy. He said my tumor will not be totally eliminated -- it's too big and buried in the wall of the stomach.

I asked, "Really? Never?" He answered that if it did, it would be a first. Sigh . . .

But he said the chemo may shrink it to the point that we are back to removing only half the stomach, and that it might eliminate the pain and bleeding. Those two symptoms were what led me to the doctor in the first place. I am on ulcer meds, and they do help, but I still have some discomfort.

Speaking of being gob smacked, one month of my meds (it's a pill, taken orally once a day) is $11,000, and my insurance doesn't cover it. However, if I go with generic, it drops to around $4,500 a month and is covered, with a co-pay of $700. Sounds downright cheap after hearing $11,000 a MONTH! My oncologist's office is working with pricing. Hopefully they will say the generic is okay. He even said they might find a program that would help with the co-pay.

In the meantime, on a lighter note, I hit the five-month mark (yesterday) since my foot and ankle surgery, and I have the surgeon's permission to start running again! We just did short 30 second sprints at Crossfit today, and it felt like I was flying!! So lovely!!! Tashi and I just came back from a little trot, because running is very good for her as well.

So how am I doing? I'm past the shock. I'm continuing to do my low carb thing, and am going to add bone broth to my regimen. I'm doing tai chi once a week at the River Bend Cancer Services in South Bend. My friend and Chi Gong specialist Jessica is going to lead my friend Cyn and me in a walking chi gong medication on Sunday, May 3, I hope. I am blown away by the loving support of family and friends.

And of course, I am still asking for jokes. I decided I would rather have jokes than sympathy. If you have read this to the end, send me a joke. Every one of them I have gotten so far has elicited a belly laugh, even when I read them for a second and third time.   :)

Peace.