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.
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