She's alive!

I'm still here and doing well. Or as well as one could expect for someone like me, which so many issues.

It was eight weeks ago today that I had a total abdominal hysterectomy, and seven weeks since I was told I had a very rare and aggressive form of cancer, uterine leiomyosarcoma, Stage IB. There isn't any chemo or radiation for this type of cancer. At Stage I since it usually doesn't respond well to either one. The treatment is just "wait and see". Even after surgery to remove the sarcoma, it will often metastasize into the lungs or liver within six to seventeen months 50% chance, maybe 40% if I look on the bright side.

It's been less than 48 hours since my second surgery to remove my remaining ovary. It was a laparscopic surgery and was suppose to take an hour. It took two hours and then seven hours in recovery because I was throwing up and in an incredible amount of pain. I found out later from my surgeon that she had a lot of trouble finding my remaining ovary. The scar tissue from my recent hysterectomy had wrapped around it so there was a lot of cutting away of tissue, which has resulted in a lot of pain.

I have five incisions in my abdomen, which indicates it was robotic laparscopic surgery. My surgeon specializes in robotics (although I forgot to ask her if she used robotics). I'd never heard of five incisions for laparscopic, I thought it was always three or four maximum. Not true for robotics, it's always five, and each of mine are an inch long. I also have an unusual amount of bruising at each incision site. Add in my six-inch vertical incision from my hysterectomy and my abdomen looks like it's been through hell.

I still feel very tired and sore. Extreme pain when getting out of or into bed or the recliner. Since this was a difficult surgery and involved a lot more cutting than expected, my surgeon suggested I stay on medical leave for two weeks, until June 17. The way I feel right now, I completely agree with her.

The most upsetting thing about the surgery was when I weighed myself yesterday. I had gained 14 pounds overnight! I was 197 the morning of the surgery and I was 211 the day after the surgery (on my home scales). I read online that this happens due to the gas and fluid retention, but 14 pounds overnight is pretty tough to take. I didn't weigh yesterday, but I'm really watching what I eat. My latest weight loss tool is MyFitnessPal app on my phone. I know tracking my food is extremely important.

I quit Weight Watchers. Since my favorite leader left, it's just not the same. I might go back some day, especially if I don't start losing weight soon. I've read that it can take up to two weeks to lose the water weight from laparscopic surgery.

The criminal trial for with my husband is suppose to happen this coming Tuesday, but I suspect it's going to be "continued" (delayed). At least that's what the prosecutor's office told me. I guess I'll find out next week, although I'd really like to get it over. 

Not much else going on in my life. Actually, there is something going on that I'm dying to post about, but it's probably best that I wait awhile. I mentioned it a couple of months ago, then I pulled the post. If you read that post, then that thing I talked about is going really well. :)

I rejoined the gym 2 1/2 weeks ago, and went five days each week. Of course now I've had a major setback in my exercise routine. For the next couple of weeks all I'm allowed to do is walk.

Kale chips are not potato chips and the beauty of mindfulness

For at least a year I've been reading on different blogs about delicious kale chips. I bought two big bunches of organic kale at Whole Foods and finally, yesterday, I set about making my fake potato chips. I found a recipe online that was five stars, it was kale, olive oil and sea salt.

After carefully washing my kale, putting it in the salad spinner to remove all moisture, tossing it with the olive oil and sea salt, then spreading it out in a single layer on my biggest cookie sheet, baking ten minutes at 275 degrees, flipping each piece of kale over and baking another ten minutes, I sat down for what I expected to be a delicious treat.

They were crunchy and beautiful. I took a bite and my conclusion, YUK! Are you kidding me?! I had a mouthful of nasty, powdery, KALE. Disgusting. I don't know how anyone could say they taste "just like potato chips". They tasted just like...well, baked kale.

I went back and looked at the recipe and reviews again. I had followed it exactly and there were over a 1,000 reviews with an average of five stars out of five stars (allrecipes.com). I guess you really can't make a silk purse out of a sow's ear. I ended up crumbling the "chips" into my beef-barley soup I had made before I knew I had cancer. Beef is off my list of cancer-fight foods I can eat, but I had made this soup and froze it over a month ago. There's only about two ounces of beef per serving so I'm finishing it off since it's so good. Next time I'll make it with free-range organic chicken and chicken broth. The crumbled kale added a vegetable to my soup so that was good, but baked kale chips eaten as potato chips are an urban myth.

Life is good right now. Even though I found out yesterday my husband's defense attorney is going to request a continuance of the June 11 criminal trial, which frustrates me, I'm still feeling the calm of peace after my cancer diagnosis.

I'm really focusing on mindfulness these days which is truly amazing. It really makes you stop and smell the roses along the way. I even put the mindfulness bell app on my cell phone (get it at the Google Play Store). It chimes at me periodically during the day. This makes me stop and take stock on where I am, what I'm doing and what I'm feeling. It amazing at how beautiful life is when you actually pay attention to it.

I've missed too many wonderful moments in life because I was too busy to notice and rushing through life, as though it was something I just wanted to get through. I really think cancer changes a person's life for the better. It's hard to explain until you experience it, but I've really been appreciating the small moments of beauty in my life. Whether it's the beauty of a bouquet of simple pink carnations or my blooming cherry tree in my front yard or the sun on face during these gorgeous spring days or my kitty sitting on my lap, purring as I stroke his fur, it's all good, and I finally feel a peace and happiness I've never experienced before. It's as though the cancer has been a blessing. Mindfulness. Try it, you'll like it.

Be gentle with yourself

Be gentle with yourself. How many times have I received this advice over the years? From my friends, my relatives, my coworkers and my blog friends (who I consider real friends).

I heard the words, but I didn't listen to them. I didn't know how to be gentle with myself. I didn't know how important it was to really live these four little words, "Be gentle with yourself".

The diagnosis of cancer is opening my eyes to so many things. Staring my own mortality in the face is making me take stock of my life. I'm seeing things so differently now. I never would have done this without cancer. I would have continued stumbling through life, dealing with things like I always have, filled with anger at the unfairness of it all. I have always stressed out over the smallest things, and the bigger the event, the bigger the stress reaction. Now I have to step back, re-evaluate and think about what I'm doing to my body internally when I react to external forces.

I'm reading a couple really good books, one is about dealing with cancer (or any serious illness, but the focus is on cancer), and the other one is preventing cancer. Preventing a recurrence of cancer is the same as preventing cancer.

Love, Medicine & Miracles by Bernie S. Siegel, M.D. is an amazing book. Dr. Siegel is a traditional medical doctor and writes about patient empowerment and the choice to live fully and die in peace. I love this book! The other book that I highly recommend for everyone, even if you don't have cancer (and especially if you don't want to get cancer) is The Definitive Guide to Cancer by Lise N. Alschuler, ND, FABNO, and Karolyn A. Gazella. This book takes a holistic approach to cancer prevention (and recognizes the benefits of traditional medicine). It focuses on nutrition, diet and stress reduction. It's also an excellent book. I love how they talk about the 80/20 rule. Eat clean 80 percent of the time, and it's okay if you bend the rules other 20 percent. In other words, a cookie now and then won't kill me.

Here's an excerpt from The Definitive Guide to Cancer, page 40-41. This is from chapter three, Prevention is Paramount:

"But for those of us trying to prevent cancer recurrence, enhancing our overall health will help add quantity and quality to the years we have left. The first step in making changes and setting goals is to access where you are right now. So to that end, and without judgement, take some time to evaluate your life. On a piece of paper, write down your answers to these questions:

1. How many hours a week do you spend working?

2. How many hours a week do you spend playing?

3. How many hours a week do you spend doing some type of spiritual practice (praying, mediating, volunteering, connecting with nature)?

Next, make a list of activities, things, and people that make you feel happy, at peace, and fulfilled. How many hours a week do you spend with those people or doing those things? At the end of your life, no matter when that occurs, what will you cherish more:  money or moments, power or peace; chaos or caring? A life well lives is a life well loved, and that begins with self-love. Don't let everyday obstacles get in the way of such devoted self-love."

Now if that doesn't make you want to buy this book, I don't know what will. It's filled with this type of thinking, as well as a lengthy discussion on nutrition and diet.

If nothing else, cancer is life changing. Even if I only have a few years left, I intend to make those the best years possible. Whether it's five or twenty-five, I intend to have a life well lived.

The food we eat and cancer

Yesterday I went through my freezer, refrigerator, pantry and cabinets and threw away things that I considered unhealthy. I couldn't believe the pile of stuff I had when I was done. I didn't realize how much processed food I had been eating.

Even things I thought were sort of healthy, I ended up throwing out. Like Dreyers frozen fruit bars and Chobani Greek yogurt had a lot of added sugar. No wonder I loved this stuff. I'm looking at sugar as the enemy now. The last thing I want to do is feed the cancer cells.

I found an interesting article on sugar and cancer written by a doctor from the University of Texas, 'Does cancer love sugar?'. Even though the naturopath oncologist agreed with me that sugar feeds cancer, that's not necessarily true. It's more what sugar does to the waistline and it's addictive properties (which I know all about). This article recommends a maximum of 26 grams (6 teaspoons) of sugar a day for women.

If I ate just one non-fat Chobani yogurt (15 grams sugar) and one Dryers fruit bar (19 grams sugar), that's 31 grams of sugar a day. I often ate two Chobani's and two frozen fruit bars in a day, or 62 grams of sugar (almost 14 teaspoons of added sugar!). I was also eating a lot of fruit, as well as other foods that contained sugar. I've definitely been eating too much sugar, cancer or no cancer.

Luckily I like Stevia, and in a pure form it's considered non-carcinogenic according to some research. At least from what little data I could find. This article, Sevia and Cancer, indicates it may even have some anti-cancer effects. My favorite Stevia is NuNaturals. I've used it on and off for the past four years and it's the only Stevia product I'll use since it's in the purest form you can buy. Most stores that have a health food section, such as Fred Myers in the Northwest, carry their products. It's not bitter at all, unless you use too much.

I went grocery shopping yesterday for the first time since before the surgery. As I went up and down the store aisles, I noticed the shelves were packed with pocessed food. I guess it never meant much to me before but now when I looked at food I judge it differently than I did before. Instead of just looking at calories and fat, now I judge food whether it's good for me or good for the cancer. Does it have cancer-fighting properties or is it filled with cancer-promoting ingredients. I ended up with very few processed foods.

This is really a different way of thinking for me. I've always thought it was okay to eat a little processed food, a little sugar wouldn't kill me, just everything in moderation, right? Now I don't want to give any random cancer cells any help on finding a place to reseed and start multiplying.

It's funny in a way. I was trapped in a bad marriage for almost 25 years. It literally took my husband putting a loaded gun to my head and threatening to blow my head off to make me file for divorce. I've been trapped in a fat body for years, now it's taken a death threat, cancer, to make me completely change my eating. Rather ironic, isn't it?

Lifestyle changes...a matter of life or death

I saw the naturopath oncologist on Thursday. She provided me with a wealth of information. Sadly, I was turned off by her pushiness to sell me $200 worth of supplements (a one-month supply) at the end of our appointment.

We got into a bit of an argument when I told her my current situation, divorce and now medical bills, had created a very tight budget for me. She got nasty and said this was my life we were talking about and if I wanted to live I needed to take these supplements, and of course, buy them from her since "they were of the highest pharmaceutical quality". I told her well, if it was a choice of a roof over my head or the supplements then I would have to choose the roof. It sort of ruined the good feelings I had been feeling up to that point.

Regardless, I did walk away with a lot of knowledge and $100 of "essential" supplements that she said was a must. I haven't taken any of them yet since I have to run them by my traditional oncologist to make sure she approves. There was a green tea extract, some sort of cumin powder mixture that I'm suppose to drink, and a mushroom capsule. I looked them up online and two of them, the green tea extract and the cumin powder do seem to have a history of building the immune system. The mushroom stuff was referred to as "folk" medicine. I really didn't like the high pressure sales. I'm sure they make a lot of money off of this stuff and it seems wrong to tell a cancer patient who has no money that they need to buy this stuff or their cancer will probably return. Obviously, I'm still a bit disappointed this happened.

Now for the really big changes in my life. I have to totally change my eating. I'm going to organic vegetables and fruits, with emphasis on the vegetables and small amounts of fruit (sugar is sugar). Small amounts of animal protein that is free-range and organic. Mostly chicken and fish, very little, if any, red meat. I'll be eating as little processed foods as possible. More lentils and beans, but I have to really watch the carbs due to I need to keep my insulin levels stable. I'm not diabetic but my fasting glucose has always been on the high end, in the 90's. Not pre-diabetic, but too close for comfort.

Portion sizes have to change to smaller meals and more often. Gone are the days of starving myself to death so I can wear size 6 jeans, then binge eating my way right back to size 18. Now it's really eating to live.

I'm also cutting back on dairy, which is a little sad because milk has always been my beverage of choice. Everything I've been reading talks about animal products causing inflammation, including milk. If there are cancer cells running around in my bloodstream, they're looking for inflammation. That's where they'll reseed and start growing. Small servings are okay, but big glasses of milk with my meals are no longer on the menu. Fermented dairy, like yogurt, is okay, but very low sugar.

Processed sugar is completely off the menu. Everything I've read indicates cancer feeds on sugar. I've known for years that sugar isn't a good thing to be eating. It always trigger cravings, and I really don't miss it. The key for me is to avoid it 100%. One bite triggers cravings for me.

I had already starting eating like this about a week ago when I was reading about cancer online and how important nutrition is to prevent the cancer from returning. I'm finding it a lot easier to eat like this than I expected. There's a bonus too, I feel so much better already.

I also can't believe how much better organic food tastes. It taste incredibly delicious. I baked a a free-range, oganic chicken last night with organic carrots, yukon gold potatoes, celery, asparagus and onion. It was literally one of the best meals I've eaten in my entire life. I had no idea there would be such a difference in the taste and texture of the food.

There's a whole list of things I have to work on besides nutrition, like sleep, exercise and my mental attitude (handling stress) are just a few things. I'm reading a couple of books that are really helpful, Five to Thrive, "your cutting-edge cancer prevention plan". And Love, Medicine, and Miracles. These are great books and are giving me a lot of insight and knowledge on how to deal with my cancer diagnosis.

My oncologist (the traditional one) gave me the go ahead last Wednesday to return to the gym. I still haven't gone, but I plan a visit this morning. It's only been 2 1/2 weeks since my total abdominal hysterectomy. I feel better but I'm far from 100% recovered. My workout will be gentle, just enough to get my heart rate up and light weights.

One thing I haven't mentioned in a long time is my binge eating. When my evil, soon-to-be ex-husband lived here I would get up in the middle of the night and eat. Not a little, but a lot. It was serious, out of control binge eating. That went on for years. It was a constant battle and barely a night went by when I wasn't in the kitchen at 1 or 2 a.m. looking for something to eat. I would eat a huge amount of food and go back to bed, alone in my bedroom.

A strange thing has happened. When my husband was arrested for assaulting me and I have a restraining order against him, my binge eating came to a halt. I may have done it a few times right after he left, but I haven't done it for months (he's been gone six months). In hindsight I know it was my unhappiness and feelings of not being loved that caused the binge eating.

I'm feeling very positive about my fight against cancer and my life. These life changes are challenging, but this really is a matter of life or death.

A new lease on life

As weird as this is going to sound, in a way, I'm thankful for my cancer diagnosis. You probably think I've lost my mind but it's given me new energy to fight for my life, as well an appreciation for this world that I've never had before.

I had my follow-up appointment with my oncologist and after reviewing my pathology report there were some positive numbers on it that increase my odds of surviving cancer. Perhaps moving it from 50% to a 60% five-year survival rate. Of course, these numbers are just a crap shoot and no one really knows.

Since this cancer doesn't respond well to chemo or radiation those are both off the table for now. I didn't know this but every cancer has it's own chemo cocktail. ULMS (uterine leiomyosarcoma) is so rare that it doesn't have it's own special chemo cocktail. They use what they think might work but so far the results haven't been good. If the cancer does come back, it will require more surgery and then they will attempt the chemo and radiation.

I'd read that this is such a rare cancer that often an oncologist might only see one or two cases of ULMS in their entire career. I asked my very young oncologist (maybe 35 years old) if she'd ever seen a case of ULMS or was I her first. I'm her third patient which she even said is pretty remarkable. She had a new diagnosis of one last week, Stage 4. No chance of survival. The cancer had mastasized into the woman's liver and they sent her home to die (she's in her mid-sixties). I'm very grateful that at least I have a chance of survival and a pretty good one too. Stage 1B is almost as good as it gets (1A would have been better).

My new lease on life is taking me to see a neuropath oncologist this morning that specializes in women's cancers. This is with the blessing of my traditional medical oncologist. The neuropath is suppose to be one of the best in the state of Washington and one of only three in this state that is a board certified neuropath oncologist. She focuses on nutrition and stress relief in order to build the immune system to fight cancer. Hear that cancer, I'm going to fight you with all I have in me!

I'm amazingly happy today. My sister-in-law (soon to be "ex" but I will call her my sister after the divorce..married to my husband's brother) went with me to my oncologist visit yesterday. She is a wonderful friend. The end of my marriage has renewed our friendship especially since we weren't able to see each other much for years because my husband and her husband barely spoke and hated each other. After the doctor we went shopping for me to get a "panty girdle". I haven't worn one of those since high school. My five-inch incision hurts if it isn't held in place. The hospital gave me a big elastic band to wear which is fine under PJs or a nightie, but doesn't work under clothes. Then we went to lunch, then a mani/pedi. We had a blast together. Laughing and talking and just enjoying each other's companionship.

Last night my manager came by and visited. We're not close friends, but it was nice of her to drop by. We talked and laughed. I made continual jokes about my cancer and death. Some people find my humor gruesome, but I think it's kind of funny that I have cancer. I mean, really, look at my life these last two years. You just have to laugh that on top of all that crap that now I have cancer. If you don't see the humor in that then you don't have a sense of humor. I find myself sometimes just giggling when I think about it. I mean, really God, do you think this is what it takes to get my attention? Okay, big guy, you've got my full attention now.

My manager was appalled at the online calculator I found for ULMS that can predict your survival rate. It's on the Sloan-Kettering Cancer Center website. I found it last week, but didn't have all the numbers from the pathology report to put in it and had to guess. Even then I came up with 57%. My oncologist told me yesterday she was going to tell me about it but I had already found it. That's where my oncologist got the 60% number. The doctors actually use this website to determine approprate treatment. Again, just a crap shoot. No one really knows.

Speaking of treatment for my cancer, there isn't any. My oncologist thinks the chemo or radiation would do more harm than good. If there are cancer cells that escaped prior to the surgery through my bloodstream then it's unlikey the chemo or radiation will catch them. Even though she thinks she got all the cancer with the surgery, there's really no way of knowing for sure. Tumor size is an indicator if the cancer will return even when they think the cancer has been completely surgically removed. A tumor larger than 5 cm is bad and the larger the tumor the great the odds the cancer cells have already spread. My tumor was 8.5 cm.

Enjoy your day and enjoy your life. Each day is a precious gift. Don't wait to enjoy life until you've been diagnosed with something like cancer.

I have cancer

I had my total abdominal hysterectomy on April 11. After the surgery my oncologist surgeon told me everything looked good. She was sure I didn't have cancer. Since there was less than 1% chance that my fibroid was cancerous I felt confident that everything was good.

The surgery went well, although the pain after the surgery was hideous. I have a six inch vertical cut from my belly button down to right above my pelvic bone. It's not pretty but it was necessary to remove my uterus and the fibroid intact.

When I came out of the recovery room my three best friends were there waiting for me. I'm really lucky to have such great friends that care for me. I don't know how I'd get through this without them.

My body parts, uterus, fibroid, cervix and one ovary (one was left inside of me) were all sent to the lab to be biopsied. On April 17th I received a phone call from my surgeon's associate (my doctor was on vacation) that I have Uterine Leiomyosarcoma. She told me it was an extremely rare and aggressive cancer. The conversation was short since I had a followup visit with my surgeon on April 24.

After researching Uterine Leimyosarcoma (ULMS) online, I was very upset. This isn't the good uterine cancer, the one with a 90% five-year survival rate. This one is different. It's so rare that there isn't much known about it. It affects six in one million women.

I called my doctor's associate back last Thursday and asked several questions. I'm in Stage 1B which sounds good, but even at this stage it only has a 50% five-year survival rate. Those aren't very good odds. Also, the larger the tumor is over 5 cm (mine was 12 cm) the more likely it will reoccur even if all of it was removed during surgery. I'm thankful I'm not in Stage II since that stage only has a survival rate of 0 - 20%.

I stumbled across a blog by a woman that was diagnosed four and half years ago with Stage II ULMS. She's still going strong, but she had to completely change her life. From removing stress factors to changing her diet to all organic, natural foods and no sugar. Cancer feeds off of sugar.

Cancer also feeds off of estrogen, which is why I have to have my second ovary removed as soon as possible. Even though I'm postmenopausal it's still producing a minute amount of estrogen.

Fat also produces estrogen, so I'm on a diet. Not a crazy, starve myself type of diet, but a whole foods, healthy diet.

Other than the cancer, the criminal trial is on schedule for June 11 and the divorce in November. Very stressful events that I'm trying to handle without making myself crazy. I can't wait for this to all be over.

I will fight this cancer as hard as I can, and I'll do the best to change my life. It's not going to be easy, but it'll be worth it.