Posted by Maggie
I mentioned that one aspect of what I'm doing to fight the cancer is diet. For those who are interested, I'm following a diet called the ketogenic cancer diet.
I've always been a believer in paying attention to what you eat. "Garbage in, garbage out," doesn't just apply to data. It makes sense that if you put junk food in your body, your health will not be as optimal as if you don't.
In the early '70s I was a strict vegetarian. My daughter's hyperactivity was controlled better by removing meat, sugar and preservatives from our diet than any drug that could be given her. We remained on that diet for many years, and while we did not consume refined sugar, we did use honey and lots of fruit. We also ate dairy products, and eggs. Looking back, if I had it to do again, I'd cut back on those.
As time passed, the children in the house grew up and made their own choices, which included adding meat back into their diets. I eventually began eating fish and chicken but never touched red meat again.
For years I was misdiagnosed with regard to stomach problems, until just a few years ago when I found I had celiac disease (inability to tolerate any form of wheat or gluten) and an intolerance to dairy products, particularly casein. I've gotten that under control, and while it's not an easy diet to maintain, it
is worth it to feel healthy.
Then came the cancer. One thing I read was that people who have had long-untreated celiac disease have a higher probability of developing certain cancers. It is frustrating to think I could have missed this, with a proper diagnosis earlier, but that's water under the bridge now.
My current diet eliminates all grains, not just wheat. The theory of the diet is that cancer cells feed only on sugar and carbohydrates. If those are not present in the body, the cells have no food and begin to die. In one of the many studies done on this diet, a patient had significant (80%) tumor reduction size in 6 weeks. Of course, if you go off the diet, you feed the cells and it can grow right back, so there has to be other treatment, such as radiation and chemo.
I started the diet on January 2. I did not start radiation and chemo until January 23. On January 25 I felt my toes and was able to move them. My radiologist doctor was amazed, but did not expect much further. He certainly did not expect to see me walk, which he saw yesterday. (Okay, just a few feet, and with the walker, but hey, I am getting around!) I doubt he spent 20 minutes studying diet in medical school, so I did not expect him to agree with my thought that it's the diet that's begun the shrinking of the tumor. But I believe it's true.
So what do I eat? My main goal each day is to consume zero sugar and zero carbs. The diet allows a few, but I find a goal of zero keeps me on track. I eat eggs, avocados, good fats --tumors can't feed on fat--chicken, fish, and unstarchy green vegetables. Nut and seed flours replace grains, and I use a minimal amount of them. Sound boring? It is not. Everything is freshly prepared, as no mixes or pre-prepared foods are trustworthy. Flavors are great, I eat small amounts every 2-3 hours and am rarely hungry. So far I have lost only about 10 lbs. and most of that was in the hospital. Not losing weight at this stage is critical as I have no reserves. It's kind of nice having people tell me to eat!
Some months ago, my daughter Amy, who also cannot eat wheat, gluten, or dairy, and I began working on a web site that will offer a variety of allergy-free diet plans and lots of recipes. Her diet and mine were similar when we began this, and her two daughters have the same intolerances we have plus others. We've had fun testing new recipes and making improvements during the two weeks she's been visiting to help me transition into my treatment.
We planned to launch the site this winter. Now we've delayed it to build a section for recipes for the cancer diet. We plan to take the site live within a couple months. I'll post a link when it goes up, for those of you who might be interested.
Meanwhile, on the art front, we set up a new painting space for me yesterday. I have too many doctor appointments today, but tomorrow I hope to paint and then post a blog with my setup and painting to share with you.
Wednesday, February 6, 2013
Wednesday, January 30, 2013
Great News!
Posted by Maggie
Yesterday was a day of low and high. It was the last day of construction--the bathroom was done, but the hall and bedroom floors had the carpet removed since I could not walk on it, and new wood floor. I am so glad to have construction workers out of the house. Of course, in typical fashion, they did not finish on time, and I had to leave for radiation without a shower, which distressed me. One of the side effects of radiation, steroids and anti-seizure medication (and probably the chemo as well) is that I get distressed more easily, and it's hard to return to an even keel. So I went off to radiation in a funk.
Radiation is not exactly painful, though it gives me a headache and makes me tired, and burns my scalp. The worst is the mask which bolts my head to the table. It's a good thing it doesn't take a long time. There are tiny breathing holes but the thing is not what you might call comfortable! This is not a very flattering photo but it's reality--I've given up all thoughts of vanity now, though I do hate my swollen face which is a result of steroids and will apparently be months like this. And yes, I'm losing my hair. Oh well it will come back. Meanwhile I'm going a bit strawberry blonde, which is what I was when I was young.
Anyway, this is how they immobilize my head. The red lines show how the radiation goes. I get 8-12 zaps of varying length, most 6,000,000 volts or more. Five days a week for 8-10 weeks, and chemo every day by pill at home. I'm grateful the chemo is not intravenous! I have terrible veins and it's always an issue to find anything usable.
So after I had radiation I had a doctor appt. This was the beginning of the good part of the day. The doctor is scheduling me for physical therapy now, which should help me learn walking again. But he also said I could take off the CFP brace from my left leg, and that was a huge change. It made it much easier to control and direct my foot which is now speaking to me most of the time. So much difference that I have been able to get around better in the house. Of course, having the carpet gone at the same time also helped.
For the first time in over a month, yesterday I was able to sleep in my own bed, and had the best night's sleep so far. It's made an enormous difference in my morning! I am so happy to be more mobile and rested.
My wonderful daughter is here now, helping take care of me. For the last 4 weeks I've had sisters here, one after another, and they have been fantastic. I am hoping by the time my daughter leaves I will be much more functional, but I will hate for her to go. She is seriously spoiling me (of course Bill has done that forever!).
Today we're getting a painting stool for me to use in the kitchen and at the easel. Not sure if I'll actually get to paint today or not but it's getting closer. Still fighting the hand shaking but I'm going to paint soon! Will post results whether good or not.
As always thanks for all the emails, support, positive thoughts and prayers. You are all the best!
Maggie
Yesterday was a day of low and high. It was the last day of construction--the bathroom was done, but the hall and bedroom floors had the carpet removed since I could not walk on it, and new wood floor. I am so glad to have construction workers out of the house. Of course, in typical fashion, they did not finish on time, and I had to leave for radiation without a shower, which distressed me. One of the side effects of radiation, steroids and anti-seizure medication (and probably the chemo as well) is that I get distressed more easily, and it's hard to return to an even keel. So I went off to radiation in a funk.
Anyway, this is how they immobilize my head. The red lines show how the radiation goes. I get 8-12 zaps of varying length, most 6,000,000 volts or more. Five days a week for 8-10 weeks, and chemo every day by pill at home. I'm grateful the chemo is not intravenous! I have terrible veins and it's always an issue to find anything usable.
So after I had radiation I had a doctor appt. This was the beginning of the good part of the day. The doctor is scheduling me for physical therapy now, which should help me learn walking again. But he also said I could take off the CFP brace from my left leg, and that was a huge change. It made it much easier to control and direct my foot which is now speaking to me most of the time. So much difference that I have been able to get around better in the house. Of course, having the carpet gone at the same time also helped.
For the first time in over a month, yesterday I was able to sleep in my own bed, and had the best night's sleep so far. It's made an enormous difference in my morning! I am so happy to be more mobile and rested.
My wonderful daughter is here now, helping take care of me. For the last 4 weeks I've had sisters here, one after another, and they have been fantastic. I am hoping by the time my daughter leaves I will be much more functional, but I will hate for her to go. She is seriously spoiling me (of course Bill has done that forever!).
Today we're getting a painting stool for me to use in the kitchen and at the easel. Not sure if I'll actually get to paint today or not but it's getting closer. Still fighting the hand shaking but I'm going to paint soon! Will post results whether good or not.
As always thanks for all the emails, support, positive thoughts and prayers. You are all the best!
Maggie
Monday, January 21, 2013
Roller Coaster Ride
Posted by Maggie
I don't like roller coasters. In fact I have never liked any carnival ride more extreme than a Ferris Wheel, and I wasn't always sure about that.
Life has been a roller coaster ride for one month now. It's not just the health issues, though they are sometimes daunting, especially with the limited mobility. But to add insult to injury, I've had to spend even more time dealing with health care providers, insurance companies, etc., etc. It seems a bit much to ask to have to do all that, chasing people down to get things in order, while also figuring out how to focus on dealing with disease. Finally I was assigned a patient advocate who is now helping with getting everything organized. With the changes in doctors and hospitals, I lost a couple days before starting treatment, but it's beginning Wednesday.
One high part of the roller coaster ride this week was getting the advance copy of my book. It has been such a pleasure to see it. Another high has continued to be the contact from so many friends and family. To my artist friends who are on Facebook, I cruise to see what you're all painting and posting. It's fun to keep up that way.
When I can do so, I think we've figured out a way to get my chair in front of an easel, with everything lowered to reach. I can't wait., and it won't be long now.
Happy painting to you all,
Maggie
I don't like roller coasters. In fact I have never liked any carnival ride more extreme than a Ferris Wheel, and I wasn't always sure about that.
Life has been a roller coaster ride for one month now. It's not just the health issues, though they are sometimes daunting, especially with the limited mobility. But to add insult to injury, I've had to spend even more time dealing with health care providers, insurance companies, etc., etc. It seems a bit much to ask to have to do all that, chasing people down to get things in order, while also figuring out how to focus on dealing with disease. Finally I was assigned a patient advocate who is now helping with getting everything organized. With the changes in doctors and hospitals, I lost a couple days before starting treatment, but it's beginning Wednesday.
One high part of the roller coaster ride this week was getting the advance copy of my book. It has been such a pleasure to see it. Another high has continued to be the contact from so many friends and family. To my artist friends who are on Facebook, I cruise to see what you're all painting and posting. It's fun to keep up that way.
When I can do so, I think we've figured out a way to get my chair in front of an easel, with everything lowered to reach. I can't wait., and it won't be long now.
Happy painting to you all,
Maggie
Tuesday, January 15, 2013
Holding to Optimism
Posted by Maggie
In general, I've always been an optimistic person. I usually wake up with a sense of well-being, of direction, of knowing what I want to accomplish for the day and having some confidence I will do so. It doesn't always work out, of course, but I usually have positive expectations.
They've been a little tougher to maintain lately, but I'm doing it. What's helped now is that there's a plan —I know what day I start treatment and just what is going to be likely to happen.
And because I want to do everything I can to improve my odds I've added in going on a strict anti-cancer diet. I've had time the last few days to do a lot of research, and there are amazing studies supporting it. The basic theory is that tumor cells are fed only by sugar and carbohydrates, so removing those from the diet helps starve the tumor at the same time as it's being poisoned and radiated. Makes a lot of sense to me. It's not a huge change for me to make this switch, as I'd already been gluten and dairy free, so it's just the rest of the grains and all forms of sugar that go. It gives me a feeling that I'm contributing to the healing process myself in addition to trusting the doctors to do what they do.
I've sketched a little, nothing great, but good to put pencil to paper. It's still hard to hold a pen or pencil without shaking so I tried a loose watercolor where I just let shaking be part of the process. It was interesting.
One more huge positive came my way yesterday—I heard from my wonderful book publisher that an advance copy of my new book is on its way to me. It will be such a thrill to see it. The books will be available sometime in March, but can be pre-ordered any time here.
I am so glad it was completed and in production before I became ill. I have been very excited about the book and can't wait to see it in print!
Once again thanks to all of who have written, emailed, sent messages and your support and wishes. It means so much to me.
-Maggie
In general, I've always been an optimistic person. I usually wake up with a sense of well-being, of direction, of knowing what I want to accomplish for the day and having some confidence I will do so. It doesn't always work out, of course, but I usually have positive expectations.
They've been a little tougher to maintain lately, but I'm doing it. What's helped now is that there's a plan —I know what day I start treatment and just what is going to be likely to happen.
And because I want to do everything I can to improve my odds I've added in going on a strict anti-cancer diet. I've had time the last few days to do a lot of research, and there are amazing studies supporting it. The basic theory is that tumor cells are fed only by sugar and carbohydrates, so removing those from the diet helps starve the tumor at the same time as it's being poisoned and radiated. Makes a lot of sense to me. It's not a huge change for me to make this switch, as I'd already been gluten and dairy free, so it's just the rest of the grains and all forms of sugar that go. It gives me a feeling that I'm contributing to the healing process myself in addition to trusting the doctors to do what they do.
I've sketched a little, nothing great, but good to put pencil to paper. It's still hard to hold a pen or pencil without shaking so I tried a loose watercolor where I just let shaking be part of the process. It was interesting.
I am so glad it was completed and in production before I became ill. I have been very excited about the book and can't wait to see it in print!
Once again thanks to all of who have written, emailed, sent messages and your support and wishes. It means so much to me.
-Maggie
Saturday, January 12, 2013
Midnight Roses
Posted by Maggie
It seems forever since I painted. It has been hard to comprehend that it has been three weeks now since I went to the hospital and this life-shattering chain of events began. But in terms of any connection to art, it seems even longer, though I had a painting on the easel the day it began.
Given all that is going on in my life, I've wondered why I have been so focused that I needed to draw or paint, when I'm also overwhelmed by the need to communicate with my leg, to heal from surgery, and so on.
What I think it is, is that I need to know I still am who I am, and a big part of that has to do with my art. If I can put pencil to paper, hold a brush and apply color, think about form and line and value, then I am reconnecting to who I am and what I do.
My hands shake endlessly. I found on an earlier attempt that I cannot hold a pencil or charcoal or pastel well enough to draw. So tonight, when my sleepless spell began, I decided to try some watercolor. Earlier today, with Bill's help and the use of a walker, I stepped a few feet into the studio to select supplies, so they were at hand and ready.
It did seem easier to handle the brush than to try to hold a pen. I loved just playing with color. I have looked at these particular roses, which are closest to the recliner where I spend most of my time, for the last two or three nights. I like them at midnight, when the fireplace behind them is dark and they silhouette in interesting ways.
It's not a great sketch. Watercolor is a "dabbling" medium for me, not something I do often or seriously, though it's fun. But honestly, my goal was set pretty low. I was more interested in that re-establishing of the art connection than anything, and that felt good.
I often tell my students they should save the occasional early work so that later they can see their progress. I think that's what some of these sketches will be for me --the record of the changes as I get stronger, and begin to regain some skills.
Midnight Roses, watercolor, 1-12-13.
It seems forever since I painted. It has been hard to comprehend that it has been three weeks now since I went to the hospital and this life-shattering chain of events began. But in terms of any connection to art, it seems even longer, though I had a painting on the easel the day it began.
Given all that is going on in my life, I've wondered why I have been so focused that I needed to draw or paint, when I'm also overwhelmed by the need to communicate with my leg, to heal from surgery, and so on.
What I think it is, is that I need to know I still am who I am, and a big part of that has to do with my art. If I can put pencil to paper, hold a brush and apply color, think about form and line and value, then I am reconnecting to who I am and what I do.
My hands shake endlessly. I found on an earlier attempt that I cannot hold a pencil or charcoal or pastel well enough to draw. So tonight, when my sleepless spell began, I decided to try some watercolor. Earlier today, with Bill's help and the use of a walker, I stepped a few feet into the studio to select supplies, so they were at hand and ready.
It did seem easier to handle the brush than to try to hold a pen. I loved just playing with color. I have looked at these particular roses, which are closest to the recliner where I spend most of my time, for the last two or three nights. I like them at midnight, when the fireplace behind them is dark and they silhouette in interesting ways.
I often tell my students they should save the occasional early work so that later they can see their progress. I think that's what some of these sketches will be for me --the record of the changes as I get stronger, and begin to regain some skills.
Midnight Roses, watercolor, 1-12-13.
Thursday, January 10, 2013
Gratitude
Posted by Maggie
Last night's blog got derailed. I'm pretty sure it was the Steroid Witch who sent it down a different track than I'd planned. But at 3 am, it's not so easy to fight the Witch.
My plan had been to write about gratitude. I am so overwhelmingly grateful for all the support, comments, posts, and messages from all of you who have been following this blog. Initially, when I first learned what was happening to me, my instinct was to retreat for a while. But I missed my friends and the interaction with my wonderful group of artists on FaceBook.
I guess I just hadn't thought about the fact that so many people would respond, but it was the best gift possible. I don't feel isolated now, and I feel the waves of positive energy coming my way.
I've spent some time thinking about other things to be grateful for over this last couple of weeks. I'm grateful I lived through that first seizure, and the biopsy. I'm so grateful to have a doctor I trust. Family and close friends helping out with everything have been absolutely wonderful. I am so aware there is no way I could have managed without them.
So I am concentrating on the positive and how much is working well, and facing the next few days with determination. And maybe in addition to being grateful, I might learn to be more patient.
Thanks again for the caring support,
Maggie
Last night's blog got derailed. I'm pretty sure it was the Steroid Witch who sent it down a different track than I'd planned. But at 3 am, it's not so easy to fight the Witch.
My plan had been to write about gratitude. I am so overwhelmingly grateful for all the support, comments, posts, and messages from all of you who have been following this blog. Initially, when I first learned what was happening to me, my instinct was to retreat for a while. But I missed my friends and the interaction with my wonderful group of artists on FaceBook.
I guess I just hadn't thought about the fact that so many people would respond, but it was the best gift possible. I don't feel isolated now, and I feel the waves of positive energy coming my way.
I've spent some time thinking about other things to be grateful for over this last couple of weeks. I'm grateful I lived through that first seizure, and the biopsy. I'm so grateful to have a doctor I trust. Family and close friends helping out with everything have been absolutely wonderful. I am so aware there is no way I could have managed without them.
So I am concentrating on the positive and how much is working well, and facing the next few days with determination. And maybe in addition to being grateful, I might learn to be more patient.
Thanks again for the caring support,
Maggie
On Being Patient (or not)
Posted by Maggie
I am not a patient person. (Those of you who know me well can quit laughing anytime now.)
I like being busy. I always have lists, schedules, calendars and deadlines. I like knowing what I need to accomplish each day and set out to do it, then cross it off and move on.
So you might not be surprised to know that having to sdend 3 days just getting an appointment with the oncologist who is to start my treatment immediately make me pretty cranky. It's finally all sorted out, but it was just a bunch of medical beuracracy that could have been dealt with days ago.
Ah, well, be patient.
On a good note the new shower walls arrived a couple days early. I am very close to having a lovely, safe new shower.
On my short list of the worst features of this unattractive illness, I am terribly frustrated with the inability to move. I suppose the desire for independent unassisted motion connects right back to that whole bit about impatience and busy-ness.
And I'm impatient to paint. More roses arrived today and they are simply gorgeous. Shaky or not, tomorrow I think I will pull out some pastels. Night all.
I am not a patient person. (Those of you who know me well can quit laughing anytime now.)
I like being busy. I always have lists, schedules, calendars and deadlines. I like knowing what I need to accomplish each day and set out to do it, then cross it off and move on.
So you might not be surprised to know that having to sdend 3 days just getting an appointment with the oncologist who is to start my treatment immediately make me pretty cranky. It's finally all sorted out, but it was just a bunch of medical beuracracy that could have been dealt with days ago.
Ah, well, be patient.
On a good note the new shower walls arrived a couple days early. I am very close to having a lovely, safe new shower.
On my short list of the worst features of this unattractive illness, I am terribly frustrated with the inability to move. I suppose the desire for independent unassisted motion connects right back to that whole bit about impatience and busy-ness.
And I'm impatient to paint. More roses arrived today and they are simply gorgeous. Shaky or not, tomorrow I think I will pull out some pastels. Night all.
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