BRAINS!!

I have never been creeped out by zombie movies... in fact, I like them. But when you're having your brain operated on, it puts a new spin on your attitude towards zombies. A few weeks ago, I was on vacation in Oklahoma with my family when my right foot went numb. We were in Tahlequah, OK, the Cherokee capital. I stepped out of the truck, and noticed my shoe had fallen off and my foot was on the concrete, but I couldn't feel it. Hmmm, that was strange. Over the next few days, it became worse, until my whole leg was numb. Within a few more days, my arm was numb. I contacted the NIH, and my husband and I flew out there immediately.

It was Friday night when we arrived. My oncologist came into the hospital at 11:30 PM on a Friday night to give me an exam! Is that service or what?? I had an MRI the next day, which revealed that one my skull lesions had decided to start growing inward and push on my brain. To complicate matters, it was also tapped into a major blood vessel that drains the sinus. I would have to have surgery, but they would not be able to remove all of the tumor in the vein area. I would also need radiation.

On Saturday, Dr. Pacak came to visit me, and he brought me a bouquet of sunflowers... on his own birthday! The doctors at the NIH are just wonderful. I cannot say enough kind words about them. They put me on steroids to control inflammation. I also started on Phenoxybenzamine in preparation for my surgery. Pheochromocytoma patients must take an alpha-blockade before any surgeries in order to control blood pressure spikes. On Sunday they sent me home. Sunday was my birthday, so I was really looking forward to getting home and seeing my kids, especially after hearing that I was going to need risky brain surgery. James and I ended up spending six hours at the airport because the flight was delayed. We made it home at 9:30 PM, and Tess was asleep. She tried to wait up for me but couldn't make it. My mom had dinner and hot cider made. Happy birthday to me!

I was due to come back to the NIH for my surgery in one week. I didn't make it that long...my symptoms continued to worsen. It was very scary how fast the tumor was growing. I could feel myself getting worse by the hour. I had double vision, trouble walking because of the numbness, and I was very dizzy. We ended up going back to the NIH early so that they could monitor me. I sat in the hospital for 5 days before my surgery. I passed the time making earrings (as best I could with double vision).

My surgery had to be delayed by a day because of Columbus Day, which is a stupid holiday! When I was in college, I protested Columbus Day along with the Native American Student Association. We went to the homecoming game and held signs that said things like "Thanks for the yellow fever." I guess this was Columbus's way of getting me back!

Finally, surgery day arrived. They were able to remove 95% of the tumor. They replaced a 3 inch around piece of my skull with some kind of plastic compound. I have an 8 inch long incision on my head, but it actually looks better than I thought it would. Surprisingly, there was very little pain with this surgery. My head has hardly hurt at all. When I woke from surgery, my feet were on fire. Some kind of neuropathy set in and it was extremely painful. That went on for two days.

I lost a lot of blood in the surgery. They had to give me two units of blood during the procedure. The next day my blood counts were still low, so they gave me two more units of blood. As I watched the blood go in, I began to get warm and I had a pinkish glow to my skin. It made me think of True Blood. If only I could get some vampire blood... maybe it would heal me. After they gave me the blood, they said I could go home. James and I checked out of the hospital the next morning, and we went over to the family lodge for a day of respite before flying home.

Now I must do 10 days of radiation to zap the remaining 5% of the tumor. I'm still taking the steroids to control inflammation. I am extremely swollen from the steroids and they keep me up at night. I also have a pinched nerve in my shoulder that is making my right arm almost unusable. But that is the least of my worries...

All of this has been enough to deal with... but there are no breaks for me yet. When I got home, I developed pain in my abdomen. I asked for a CT scan. There are at least ten tumors in my liver, and two of them are over 5 cm. Really? Seriously? I cannot get a break??

So here I sit, in a sort of catch 22. The radiation on my head needs to be completed, and yet the rapidly growing disease in my liver needs to be addressed. And the pain and discomfort in my abdomen is a constant reminder of it all. Will I ever be back to myself again?

This Journey will Never End

I've been on chemotherapy for 1 year and 8 months. The chemo itself is very difficult to deal with. Each cycle puts me out of commission for nearly a week. I'm nauseated, weak, tired, and my tumor spots (which are all over) flare up and cause pain for several days. Each treatment is 2 days because one of the drugs has to be given over 2 days. On the third day, I receive a shot called Neulasta that boosts my white blood cell production. The shot has worse side effects than the chemo. It makes my skin burn. I can barely stand to take a shower. It also makes me incredibly weak, and when I stand up I nearly pass out. It also gives me feelings of doom and makes me want to die. Really, the shot is THAT bad. I'd like to never have it again, but there doesn't seem to be any other way to keep my white cell count up. When the chemo started, I went every three weeks, then it was every four, and now it's every five. The only thing that makes the chemo bearable is the time I have in between cycles when I feel nearly normal.

My journey with cancer did not start with the chemo. It has been ongoing since the birth of my beautiful daughter, who is now 5 1/2. Since then I've been through three major surgeries (my neck, my hip, and my liver), each with their own set of post-op woes. My body has been forever changed... nerve damage, metal hip, missing gallbladder. I've also been through radiation, radio frequency ablation, and a second pregnancy while the cancer continued to grow. My precious son is a miracle, because he came in the only window possible. Just another month later, and I probably wouldn't have been able to get through the pregnancy. It was interesting to be pregnant just four months after a hip replacement. That brought its own set of aches and probably delayed my healing a little bit. Despite all that, I made it through. Just three months after he was born, I had to have a mass dose of MIBG radiation as a treatment for my cancer. I had to stay away from my family for two weeks. I had to stop breastfeeding my son, which still makes me sad when I think about it. I breastfed my daughter for 16 months, and I'm a big supporter of breastfeeding.

Going back even farther, when I was ten years old I started vomiting every time I exercised or did anything that would increase my heart rate. I had high blood pressure. It took EIGHT YEARS to get a diagnosis. I had surgery when I was 18 to remove the orange sized tumor, one of my kidneys, and an adrenal gland.

Yes, this cancer has robbed me of many things. It has caused horrific pain that I never imagined possible. And now it threatens my life again, despite being on chemotherapy. It's spreading in my pelvis and hip joint. It seems there is no end in sight to this cancer. I just want to hang on until a cure is found. That's what I'm trying to do. I want to see my kids grow up, and I want to be there to help them if they ever develop the same tumors that I have.

My family and friends keep me going. I will fight this thing to the end.

Living with Cancer

I've had metastatic pheochromocytoma for 5 years. I've been on chemotherapy for a year and eight months now. I have found it challenging to know what to eat/drink while living with this disease because there are differing opinions on everything. I thought I'd share some of my eating practices. I'd love to hear from others who have tips.

• Drink white tea with honey - White tea has more antioxidants than green tea. So that you do not kill off the antioxidants, let boiling water cool down for a minute before you put your tea in it. Honey can help boost your immune system.
  
• Limit red meat - Eat more fish. This is one where I have room for improvement.
  
• Limit dairy products - Dairy products can cause inflammation. I can't give up cheese, but I avoid milk, except when I get an occasional craving for it.
  
• Drink coffee - Yes, I drink coffee and no, I will not stop. Even though people say I should get off of caffeine, I won't do it. Coffee has been shown to slow memory loss.
  
• Drink red wine - Antioxidant power! Plus you've got to indulge yourself once in awhile.
  
• Eat dark chocolate - I buy the 80% kind, which doesn't taste very good, but the higher the cacao percentage, the more anti-oxidants are in it. I eat one square per day. Milk chocolate cannot be substituted... it's just a lot of fat and sugar. Dark chocolate also helps dilate blood vessels and can lower blood pressure.
  
• Use cinnamon - I try to use a little every day. It helps regulate blood sugar.
  
• Eat Indian food - Turmeric can alleviate inflammation, and it's found in many Indian dishes.
  
• Avoid soy - This is difficult because soybean oil is in everything. I avoid it as much as possible. Soy contains plant estrogens, which are not good for some cancers, especially some forms of breast cancer. Most of the soy in this country is genetically modified and treated with herbicides, which is another reason to avoid it.
  
• Avoid high fructose corn syrup - Studies have shown that cancer cells thrive on glucose. It's best to avoid sugar in most forms, but it's highly difficult for me. All I can do is try.
  
• Avoid artificial sweeteners - I used to drink Diet Coke every day. I finally broke myself of the habit. I don't know if aspartame has any relation to my current health status, but it can't hurt to avoid it. You have to check labels... it's hidden in many foods. If I have something sweet, I go for real sugar.
  
• Take vitamins - I take B6 to boost my red blood cells, a multivitamin, extra vitamin C, and a calcium chew with vitamin D every day.
  
• Eat fresh, organic produce - Try to avoid pesticides and herbicides. Steam vegetables so that you don't cook away their nutrients.
  
• Eat broccoli - Broccoli contains cancer fighting compounds.
  
• Eat garlic - It has antibacterial properties, may lower cholesterol, and wards off mosquitoes.
  
• Use olive oil - It doesn't work for baking, but I use it as much as I can when I cook.
  
• Drink water - This is actually one of the hardest items for me. I don't drink enough water partly because I can't put the coffee mug down. Well, there is water in coffee, right?
  

My last tip does not involve food, but it's important. I've been taking mud baths on a regular basis. They are relaxing, and the type of mud bath I take is high in humic acid. Humic acid will boost the immune system, help the body become more alkaline, relieve pain, and rejuvenate the skin. I have not been using these baths very long, but I have already noticed a difference in my skin. I highly recommend these baths! Golden Moor Mud Baths

The State of Food

I watched the movie Food, Inc. awhile back. It exposes the terrible practices that the food industry doesn't want you to know about. Everything from genetically modified soy and the evil empire who created it, mistreatment of animals, mishandling of meat and produce, mistreatment of workers... all the ugly truth is there for you to see. And even if you don't want to see it, I think you should. You NEED to see it.

I am really disturbed by just how much soy and high fructose corn syrup is used in food. Those ingredients are in EVERYTHING! I ate soy heavily for about 3 years before I developed cancer. Even though I have a genetic predisposition to the cancer I have, I can't help but wonder if the soy had something to do with it. I only recently realized that 90% of the soybeans in this country are genetically modified to resist the herbicide Roundup. So, most of the soy we eat probably has this chemical mixed in with it. And soy is touted as a health food...

With the availability and low cost of processed foods, it doesn't surprise me that people are getting cancer and diabetes at younger ages. I'm not surprised that so many kids are obese and have high blood pressure. But how do we stop it?

As a result of watching the film and doing some other research, I changed the way I grocery shop. My kids have a chance of getting the same cancer I have, so it is extremely important that I give them the healthiest foods I can. I have stopped buying foods that contain high fructose corn syrup. Even though it's difficult, I try to buy foods that do not contain soy or soybean oil. I buy as much food as I can from Farmer's Markets. I grow some of my own vegetables. I buy organic. I only buy milk that does not contain growth hormones. I buy meat that does not contain hormones. Grass fed beef and free range chickens are best, but they are not always affordable. I buy cage free eggs, which are nearly three times the price as regular, but aside from the fact that the chickens are treated humanely, I think they taste better.

Those changes have upped our grocery bill somewhat. It's not cheap to eat healthy, and that's a shame. It's worth it to me. If we demand that these unhealthy ingredients be removed from our food, the industry will listen. They will have to if they want our money. So let's demand change!

Hello, It's Me Again...

Wow, it is 2010, and my last post was September 2008. Has it really been that long? I do have a good excuse for being absent from the blog world. I have been on chemotherapy for the last year. The tumor saga goes on... In December 2008 I was in extreme pain, my tumors were growing and spreading, and it was finally decided that I would start CVD chemotherapy. CVD is a cocktail of three drugs... cytoxan, vincristine, and DTIC. At first I received it every three weeks. Then we moved to every four weeks. It makes me horribly nauseated despite all the anti-nausea drugs I take. I also receive a Neulasta shot after each chemo treatment, which keeps my white blood cell production going. The side effects of the shot are worse than the chemo. The combination of chemo and the shot pretty much puts me out of commission for a week. I get three weeks of "normalcy" between treatments. I use that term loosely because I do get tired. For the most part, I can't complain. The chemo is gradually shrinking the many bone lesions I have. I will stay on it until it stops working or until the tumors are gone, which would be some sort of miracle. I keep hoping that a cure will be found in the meantime.

On my last visit to the NIH for scans, I had one trouble spot in my pelvis. It was more enhanced than on a previous scan, which means there is tumor activity going on. So, they are going to burn it out with RFA (Radio Frequency Ablation). I had RFA on my liver once, but that was during surgery. This will be a little different.

I'm still working (part time). My work status may change eventually, but I'll always be a mom. The kids keep me very busy. Tess is in preschool and Nolan turned two last month.

My only goal for each new year is to be in better health at the end of the year than I was at the beginning. That was true for 2009, so I hope it will be true for 2010.

Killing Bugs Never Tasted So Good

We've all had fruit flies in our house at one time or another... you leave some bananas on the counter until they turn black or leave a plate of spaghetti sitting on the counter for awhile (ahem), and BAM. Fruit fly infestation. Usually you get lucky... toss out the offending item and the fruit flies gradually disappear, but sometimes they are hesitant to leave. You catch them mating on the kitchen counter and try to smash them, but they fly away too fast. You get out the vacuum cleaner and start sucking them off the ceiling in the evening when they land up there to do whatever fruit flies do on the ceiling, but you still see them flying around your cereal the next day.

Well, I have stumbled upon a surefire way to get rid of those pesky fruit flies! Not only will it eliminate the problem, but it's also fun.

Step 1. Obtain a bottle of sweet, fruity wine (they seem to prefer white). The fruit flies at my house really like Traminette and Simmons' Winery Autumn Late Harvest (they have discerning taste, at least).

Step 2. Drink most of the wine (this is the fun part). Leave an inch or so of wine in the bottom of the bottle.

Step 3. Set the open wine bottle in the area where fruit flies seem to be congregating (kitchen, maybe?). Note: Be sure to use the bottle. A glass does not work as well.

Step 4. Wait.

You will notice less and less fruit flies buzzing around your food and more and more fruit flies floating helpless (and dead) in the wine bottle.

This absolutely works. Last summer we had a fruit fly problem and we tried everything to get rid of them... unsightly fly paper, the vacuum method, Raid, but nothing worked until I accidentally left a bit of wine in a bottle sitting out. The next day I counted 20 some fruit flies floating in the bottle. A couple of days later the problem was completely eradicated. I have used this method a few times since then (I guess we get a lot of bad bananas) when I notice fruit flies around, and it works everytime.

I wonder if I can have this idea patented.

A Testament To My Age

There are two Windows folders in My Documents called My Albums (for pictures) and My Music. I consistently click on the My Albums folder when I want to play some music. I guess I'll never learn... like a grandma who can't set the time on her VCR.

Buggin'

My three year old daughter is afraid of bugs, especially the flying variety. When I say afraid, I mean terrified for her life. At the sight of a fly, bee, gnat, or whatever, she screams, starts crying, trembles, hides her face and/or gets behind me. The scream startles everyone around us, and they think she is mortally injured. So whenever this happens in public, it's really nice to endure all the stares from people.

She also has the uncanny ability to find the smallest bugs around the house. She'll point out the tiniest ant crawling around on carpet where it normally would be camouflaged. One day she told me there was a spider in the potty. I'm thinking it's on her little training toilet... no, there is a spider crawling around in my toilet bowl! I'm glad she found it. I am amazed at her bug spotting ability, but it does not help her phobia one bit.

I don't know why she developed this phobia. I may jump once in awhile if a bug lands on me outside or if I see a big bug in the house, but I've never reacted like that. Maybe it was television. It gets blamed for everything else, so we'll just say that's it.

We have tried various approaches in order to deal with her phobia. We've reassured her that bugs won't hurt her, they are afraid of her, some bugs are good, and so on... but she is three. You can't reason with a three year old. After having this happen again and again I finally lost my patience and yelled at her and put her in timeout on the couch. That didn't work either. You can't scare the fear out of someone. The psychologist in me thought about systematic desensitization, but again, she is three. I think she is going to just have to outgrow it. In the meantime, I have to remain calm whenever I encounter a creepy crawly. I don't like millipedes, and there have been two of them in the house recently. It's really hard not to yelp when you see one of those. I have to suck it up and set a good example!

It's going to be a fun summer indoors... I bought Tess a pool, but she can't enjoy it. She barely even had a foot in it today when she saw something and ran screaming back into the house.

Happy Summer Solstice!