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.
Monday, May 7, 2018
Health update
I am scheduled to start chemo to reduce the size of a GIST (gastro-intestinal stromal tumor) to prevent -- or minimize -- surgery that would require removing my whole stomach and part of my esophagus.
Now it is down to who pays. Cost of a month's meds is $11,000. There could be help on many fronts. First victory - Humana, after saying it wasn't covered, has given me approval for the name brand med, which is what the oncologist has ordered. However, the co-pay was $3,000 a month. After many calls, it is now down to $950 co-pay a month, still pretty hard to swallow.
Novartis, the maker of the med, may opt to provide it for $25 a month based on my income and the severity of the illness. My fingers are crossed. Definitely the best deal, but it could be up to three weeks wait, and there is a little discomfort that I'm hoping will go away if the tumor shrinks.
In the meantime, I am dealing with this by assuming that anything less than total removal of my stomach is a win. And even if the worst happens, it is not life threatening. So that's where I am.
I'm continuing on my low carb ketogenic diet. I've started drinking Essiac tea every night. My friend Bill reminded me that turmeric has cancer fighting properties. I can do that! Love curried anything, which is loaded with it. My daughter reminded me of the healing properties of frankincense. I rub it on the back of my neck in the morning, put a few drops on the personal diffuser I wear around my neck, and use it in my cute little diffuser that fits in the USB port on my computer and in my car.
Finally, the weather has broken and spring is here. I filled my seedling tray with organic seedling mix and filled 11 cells, mostly tomatoes, in each of 24 rows. There is one row of basil and four rows of flowers, mostly nasturtiums. See, even the flowers I grow have to be edible! And they have already started to germinate.
I spent time in the sun cleaning up my rose garden yesterday. I often say that making a dozen or so French baguettes twice a week are my moments of Zen, but I think flower beds are, too!
Cyn is coming over this afternoon to practice Tai Chi with me. You can find Brother Raymond teaching Tai Chi here. Cyn and I go to River Bend on Wednesday for first hand instructions.
I am stopping to smell the roses, bake bread and do tai chi with friends. Who could ask for anything more?
Now it is down to who pays. Cost of a month's meds is $11,000. There could be help on many fronts. First victory - Humana, after saying it wasn't covered, has given me approval for the name brand med, which is what the oncologist has ordered. However, the co-pay was $3,000 a month. After many calls, it is now down to $950 co-pay a month, still pretty hard to swallow.
Novartis, the maker of the med, may opt to provide it for $25 a month based on my income and the severity of the illness. My fingers are crossed. Definitely the best deal, but it could be up to three weeks wait, and there is a little discomfort that I'm hoping will go away if the tumor shrinks.
In the meantime, I am dealing with this by assuming that anything less than total removal of my stomach is a win. And even if the worst happens, it is not life threatening. So that's where I am.
I'm continuing on my low carb ketogenic diet. I've started drinking Essiac tea every night. My friend Bill reminded me that turmeric has cancer fighting properties. I can do that! Love curried anything, which is loaded with it. My daughter reminded me of the healing properties of frankincense. I rub it on the back of my neck in the morning, put a few drops on the personal diffuser I wear around my neck, and use it in my cute little diffuser that fits in the USB port on my computer and in my car.
Finally, the weather has broken and spring is here. I filled my seedling tray with organic seedling mix and filled 11 cells, mostly tomatoes, in each of 24 rows. There is one row of basil and four rows of flowers, mostly nasturtiums. See, even the flowers I grow have to be edible! And they have already started to germinate.
I spent time in the sun cleaning up my rose garden yesterday. I often say that making a dozen or so French baguettes twice a week are my moments of Zen, but I think flower beds are, too!
Cyn is coming over this afternoon to practice Tai Chi with me. You can find Brother Raymond teaching Tai Chi here. Cyn and I go to River Bend on Wednesday for first hand instructions.
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| Brother Raymond leading tai chi class |
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.
Thursday, April 5, 2018
How did I start blogging?
I have been blogging for quite a while now, starting with my farm life. So many of you have been with me through chicken stories, pet stories, cooking stories, and now, grandchildren getting married stories.
How did I start blogging? I went to a movie.
I saw Julie and Julia - twice in the theatre, and countless additional times since I bought the DVD. Julie blogged - she started a blog to talk about making every recipe in Julia Child's book, Mastering the Art of French Cooking. Eventually it led to a movie! I was so inspired that I walked out of the theatre, went home and wrote my first blog.
I don't do any thing tricky, just write my stuff and upload pics. My life is interesting enough that there seem to be over a hundred hits for every blog lately, and that makes me happy - happy to share bits of my life with you.
Still waiting for a movie contract though. Just saying . . .
How did I start blogging? I went to a movie.
I saw Julie and Julia - twice in the theatre, and countless additional times since I bought the DVD. Julie blogged - she started a blog to talk about making every recipe in Julia Child's book, Mastering the Art of French Cooking. Eventually it led to a movie! I was so inspired that I walked out of the theatre, went home and wrote my first blog.
I don't do any thing tricky, just write my stuff and upload pics. My life is interesting enough that there seem to be over a hundred hits for every blog lately, and that makes me happy - happy to share bits of my life with you.
Still waiting for a movie contract though. Just saying . . .
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| My bookmark in the book My Life In France is a boarding pass from my trip to France! |
Tuesday, April 3, 2018
Joe and Katie's wedding
We had two weddings last fall. I have been remiss in getting pictures up from the second one, the marriage of my younger grandson Joe and Katie, his lovely bride.
We had a wonderful time! The wedding took place in West Lafayette. Katie and Joe are completely devoted to one another, and to their business (gotta get a plug in here!), Summit Strength. Joe takes care of the business end and teaches classes. Katie teaches nutrition. Want to see their Facebook page? See it here.
But back to the wedding. Great music, great food (a taco bar, and it was FANTASTIC!). Since I had a two hour trip home, I didn't stay until the last dog was hung, but nevertheless, had a great time.
Here are some of my favorite pics.
We had a wonderful time! The wedding took place in West Lafayette. Katie and Joe are completely devoted to one another, and to their business (gotta get a plug in here!), Summit Strength. Joe takes care of the business end and teaches classes. Katie teaches nutrition. Want to see their Facebook page? See it here.
But back to the wedding. Great music, great food (a taco bar, and it was FANTASTIC!). Since I had a two hour trip home, I didn't stay until the last dog was hung, but nevertheless, had a great time.
Here are some of my favorite pics.
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| The bride and groom |
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| Katie |
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| Joe |
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| Katie and Joe Mills |
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| Joe dancing with Grandma Storkman (Carol) |
Christine, Grandma Susie and Dad (Jim)
Monday, January 8, 2018
Recovery from foot and ankle surgery
Well, tomorrow marks two weeks since the doctor did surgery on my foot (tendon) and ankle (ligament). Pain wise, I'm okay. Didn't really need to take any pain meds other than Tylenol, I think. In fact, the pain med I took made my heart race, and between that and doing far more than I should have been doing, I ended up in the hospital with Prinzmetal's angina. It was diagnosed several years ago, and it is certainly not life threatening - nitroglycerine tablets provide immediate relief - but I went from having three or four a YEAR to having four in two days, and they were extreme.
So now, when I'm on a mission to do things, I rest frequently. Get up, wash up (or shower every third day or so), then SIT. Go down the stairs backwards on my knees with bag of stuff (yarrow oil for my dry lips, Kindle, cell phone, etc.), then SIT. Feed the dogs, then SIT. You get the picture.
My attitude towards life is, "If you can, then DO." So if I can find a way to get it done (such as doing a load of laundry, requiring 36 stair steps total and pushing the clothes to the machine with a crutch), then I do it. Not anymore. That is what precipitated the fourth and worst attack of Prinzmetal's, and it was bad enough to scare me.
I imagined this whole ordeal would be bad, and the anticipation of a bad time didn't make the outcome one damned bit different. Nope. In fact, it is even worse than anything I imagined. No driving, no walking, no working at market, NOTHING. Depending on someone else to do every little thing, like delivering an internet order to the PO, picking up a few groceries, and of course, doing my laundry.
The best thing now is that I actually have less pain than I did before the surgery. Doctor's appointment a week from Wednesday, at which time I will find out next steps - and oh, how I hope it includes STEPS! Depending on healing, worst case is five more weeks in cast, best case is cast off, boot on and very minimal walking. We will see. I'm trying not to get my hopes up.
I ordered a love-seat recliner, hoping I could sleep downstairs. It got here late due to fires in CA and snowstorms in IN, but my son uncrated it and put together the few little things that had to be done. Here is a pic of the two of us when it was finally up. Yes, I'm napping in it - it's very comfy - but I still want to be in my bed at night.
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