At last, my stomach doesn't hurt when Fred decides to crawl onto it. My energy level is almost up to pre-cancer treatment levels. Three weeks from Wednesday, I get to go back to Crossfit. Yesterday afternoon, I mowed the whole lawn (first time since foot and ankle surgery).
I am on a ketogenic diet for health reasons. It has gotten me off a nasty scrip, and has enabled me to lower my dosage for blood pressure meds. Lately I have been taking Celebrex every other day, sometimes I can quit altogether, depending on activity level AND how well I have been eating.
How well have I been eating? Not very. Did you know a Klondike bar has 28 grams of carbs? Cut in half, that's only 14, and I can have 22 a day. That's okay if I haven't had a tiny (or not so tiny) bite of bread, haven't eaten some of my favorite keto recipes that still have 10 grams per serving (so why not have TWO servings?). It had to stop.
Now that I am back in the groove with the keto diet, I am hoping to ditch the Celebrex altogether. Besides, a healthy dropperful of CBD oil works almost as well as Celebrex, especially if I have been in ketosis. I'm happy with 5, but this morning my reading was 15, and I can feel the difference. It's almost like taking speed.
It has been a long road since I had surgery for torn ligament in ankle and torn tendon in foot the day after Christmas. That one was worse than I imagined it would be. I had barely gotten back on my feet when I noticed severe stomach cramps and black, tarry stools. That eventually led to a diagnosis of a malignant sarcoma, known as a GIST (Gastro Intestinal Stromal Tumor), planted in my stomach near my esophagus, a particularly bad spot. I was back at Crossfit for only six weeks when I had to go on chemo, which sapped my strength to the point where I didn't go anymore.
In the midst of all of this, I lost my beloved Tashi, 14 years old, pretty ill for the last five years of her life, but we hung in there together. Still miss her so much.
Maybe when so much goes wrong in such a short time, one finally becomes immune to shock. However, I experienced shock when the oncologist told me that I would not need anymore chemo after my surgery. In the hospital after its removal, the surgeon told me three years of chemo! Seems like it was just more bad news to deal with, another challenge I really didn't want to face.
And then three weeks later, after all of the path reports were in, the oncologist gave me the lovely news - NOT an aggressive tumor, although definitely malignant. SLOOOOOOOOOOOOOW growing tumor, in spite of a spurt of growth when I was taken off Gleevec due to liver and heart problems. But it's gone!
So yes, I am shocked! GOOD shock!! I was considering how to deal with having to go back on chemo, which was like poison to my body. I seriously considered just saying no, and letting the chips fall where they may. Better a few years of feeling good than 20 years of the hell of dealing with Gleevec and all of its side effects. I was on a support board, and many of the people on the board have been on Gleevec for 18 years!! Bothering your liver? Then just get on steroids - with all of their side effects - in order to tolerate the chemo. I was the only one on the board with heart issues, so I had no one from whom to get info on that.
CT scan in six months, every six months for two years, then every TEN YEARS! I choose to look at the situation as a cure. If I get bad news in six months, I will deal with it then. In the meantime, living with the firm belief that I am cured has helped me to get back on the wagon and "just say no" to Klondike bars, a small (well, maybe this time a medium) order of well done French fries, and one too many tastes from my samples of the French baguettes I take to market on Saturdays. I am back on the keto train and feeling wonderful!
Showing posts with label Diet. Show all posts
Showing posts with label Diet. Show all posts
Monday, September 10, 2018
Monday, June 25, 2018
I know you are trying to help, but . . .
I get a lot of advice from people who have the answer, people who tell me that cancer is a modern disease borne of the way we live and eat now (it's not, cancer was found in dinosaur bones), that sugar feeds cancer (that's one I believed but given my ketogenic diet, I should not have been confronted with this if sugar really is the culprit), and much more.
I know that people mean well, but before you send me your magic cure, please take the time to read this article. These are well documented.
While my oncologist in Indy believes that T-cells boost our own immune system and can help to heal us, he is not advocating T-cell production (yoga, hobbies, meditation, family & friends, etc.) IN PLACE OF Gleevec, since he understands Gleevec's importance. He is not pooh-poohing every alternative - but does believe those things are adjuncts, not alternatives.
Anyway, here is the article. Please read carefully for a good education on what cancer is and how we can (or cannot) heal. And BTW, I am still rubbing frankincense essential oil over my belly and eating a very low carb diet. And I bought a boat, being delivered today, and named her T-Cell!
Please take the time to read this Don't Believe the Hype - 10 cancer myths debunked.
Saturday, June 23, 2018
Good news, not so good news, a little of each.
I went to Dana Farber Cancer Clinic in Boston on Thursday. It was a grueling day - up at 2 am, Vinny, my friend who is an Uber driver, was there to pick me up at 3:30 and take me to O'Hare, where the fare was less than a fourth of the fare out of South Bend. I got back at 3:30 am, 24 hours later. Long day!
I arrived at the clinic right on time and got through the check-in process pretty quickly. My appointment with the surgeon was what interested me the most, since the surgeon I had talked to in Indy said surgery would be drastic, that about the best I could hope for was to have half my stomach removed as well as the bottom of my esophagus, and that was only IF the chemo reduced the size. No size reduction, then the whole stomach and bottom quarter of esophagus would have to go.
I live to eat, not the other way around. I live alone, often spend an hour or more fixing my dinner in the evening because of the pure pleasure of going through recipes, preparing the food, and then enjoying the fruits of my labor. No stomach? I was distraught. Half a stomach? Not much of a consolation prize.
I started on Gleevec, which isn't actually chemo, but rather a kinase inhibitor. But it has the same purpose - to shrink the tumor.
The good news - Dr. Wang (pronounced Wong), the surgeon at Dana Farber, said no to removing the whole stomach, and said even if he did it now, he would just take a triangle out and wouldn't touch the esophagus (that part was really worrying me, Google junkie that I am). I asked about eating afterwards. He said I probably wouldn't even notice the difference. Probably not eligible for laparoscopy unless the shrinkage from the meds far exceeded expectations. So if there is an incision, how long until I can go back to Crossfit? "Four weeks," he said! I said, "You're hired!"
Meeting with the oncologist in the afternoon was not so uplifting. I was told in South Bend that it was a slow growing tumor. I was hoping to get into a study. It was $3,000 co-pay for 30 pills vs. free. I opted to wait for the free stuff so I started the pills three weeks later. The oncologist looked at my pictures and said it was extremely fast growing, had in fact doubled in size between April 2 and April 24. I said, "I should have paid the $3,000 to get on Gleevec right away." He said, "Yes, you should have, but since you were told it was slow growing, you made what at the time seemed to be the right decision." No more pics were done before I started Gleevec, so who knows how large it got before it was finally treated. I know I have gone from size 10 pants to size 14, and I'm wearing smock type blouses. Oh, well, what is done is done, and I can just cross my fingers that I didn't cross any lines by waiting.
On July 11, they will do another CT scan, but of course it will not take into account any growth that happened between April 24 and May 15. The important thing now is to assess it often to check for rate of shrinkage. As soon as the rate begins to slow, or anyway this is the word I am getting from Dr. Morgan, the oncologist at Dana Farber, it comes out! I will continue seeing my oncologist in Indy, but the surgeon will be Dr. Wang, and it will be done at Dana Farber in Boston. Not convenient, but it's my health and my life, and I want to walk away from all of this with a functioning stomach, malignancy free.
So that's what's happening in my life. And by the way, the oysters on the half shell that I had for lunch in Boston were fabulous! Best ever, with shaved frozen horseradish atop each luscious plump bivalve.
Like I said, I live to eat.
I arrived at the clinic right on time and got through the check-in process pretty quickly. My appointment with the surgeon was what interested me the most, since the surgeon I had talked to in Indy said surgery would be drastic, that about the best I could hope for was to have half my stomach removed as well as the bottom of my esophagus, and that was only IF the chemo reduced the size. No size reduction, then the whole stomach and bottom quarter of esophagus would have to go.
I live to eat, not the other way around. I live alone, often spend an hour or more fixing my dinner in the evening because of the pure pleasure of going through recipes, preparing the food, and then enjoying the fruits of my labor. No stomach? I was distraught. Half a stomach? Not much of a consolation prize.
I started on Gleevec, which isn't actually chemo, but rather a kinase inhibitor. But it has the same purpose - to shrink the tumor.
The good news - Dr. Wang (pronounced Wong), the surgeon at Dana Farber, said no to removing the whole stomach, and said even if he did it now, he would just take a triangle out and wouldn't touch the esophagus (that part was really worrying me, Google junkie that I am). I asked about eating afterwards. He said I probably wouldn't even notice the difference. Probably not eligible for laparoscopy unless the shrinkage from the meds far exceeded expectations. So if there is an incision, how long until I can go back to Crossfit? "Four weeks," he said! I said, "You're hired!"
Meeting with the oncologist in the afternoon was not so uplifting. I was told in South Bend that it was a slow growing tumor. I was hoping to get into a study. It was $3,000 co-pay for 30 pills vs. free. I opted to wait for the free stuff so I started the pills three weeks later. The oncologist looked at my pictures and said it was extremely fast growing, had in fact doubled in size between April 2 and April 24. I said, "I should have paid the $3,000 to get on Gleevec right away." He said, "Yes, you should have, but since you were told it was slow growing, you made what at the time seemed to be the right decision." No more pics were done before I started Gleevec, so who knows how large it got before it was finally treated. I know I have gone from size 10 pants to size 14, and I'm wearing smock type blouses. Oh, well, what is done is done, and I can just cross my fingers that I didn't cross any lines by waiting.
On July 11, they will do another CT scan, but of course it will not take into account any growth that happened between April 24 and May 15. The important thing now is to assess it often to check for rate of shrinkage. As soon as the rate begins to slow, or anyway this is the word I am getting from Dr. Morgan, the oncologist at Dana Farber, it comes out! I will continue seeing my oncologist in Indy, but the surgeon will be Dr. Wang, and it will be done at Dana Farber in Boston. Not convenient, but it's my health and my life, and I want to walk away from all of this with a functioning stomach, malignancy free.
So that's what's happening in my life. And by the way, the oysters on the half shell that I had for lunch in Boston were fabulous! Best ever, with shaved frozen horseradish atop each luscious plump bivalve.
Like I said, I live to eat.
Friday, April 27, 2018
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.
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.
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