I Want to Go to Dairy Queen

During my recent visit with the oncologist, we corrected some misinformation in my records. The pathology done after my surgery in November 2008 showed that I had 5 lymph nodes that were cancerous, but a transcription error changed that number to 3 on my subsequent records. My ten-year prognosis had to be refigured based on the correct number, and the outcome was not encouraging. Before the mistake was corrected, my raw recurrence risk was figured to be 60%. The treatments I had received gave me a possible 20 percentage point advantage, bringing my recurrence risk down to about 40%. After the numbers were refigured, my raw recurrence risk is now calculated to be 83%, and with the treatment advantage, as low as 60+%. None of my treatment would have been different with the correct information.

When I talked to the oncologist about the problems I've been having with the Tamoxifen, she was about as blunt as she's ever been. She told me that my decision whether or not to keep on taking the Tamoxifen is basically a quality-of-life choice. She said that since statistics indicate the cancer is almost certain to return, I have to decide whether I want to burden my next years with these side effects or just make those years as pleasant as possible for my family and me. She was not eager to encourage me to drop the medication, but she was not opposed to other "quality-of-life" choices.

I knew my recurrence risk was high, so this wasn't exactly devastating news. I've known for quite a while that a mistake had been made in my records, so I was aware that the statistics I had been given were probably not accurate. And to make the picture brighter, I had recently begun doing more extensive research into alternative methods of reducing cancer recurrence, and the information I came up with was very encouraging.

Back when I first started this blog, I was, frankly, overwhelmed and discouraged with all the information on alternative treatments that I was receiving. But over the past two years, we have had time to sort through information and decide what we found trustworthy and reasonable. For the time being, I have decided to keep up the Tamoxifen while at the same time being very careful with my diet. I am trying to eat mostly raw fruits, vegetables, grains, no sugar, almost no meat. I've added a few specific items to my daily diet that are supposed to be very beneficial.

I'm about a month into this now, and it's becoming slightly easier. At first, all I thought about was food. Although I thought I didn't have a sweet tooth, I was craving Dairy Queen, chocolate, and cookies. I dreamed about steaks and hamburgers. I mostly felt hungry and grouchy even though I was eating nuts, fruit, and salad all the time. A couple of days ago, much to my relief, I finally felt satisfied with my meals. Today, we got coupon in the mail for a Dairy Queen Chocolate-Covered Waffle Bowl Turtle Sundae - my very favorite 1,000 calorie DQ treat. I hope I can get some satisfaction from just looking at the picture. Jon said if I can stick to this diet, maybe he'll get me one on my birthday. That's almost a year away. I'll be so healthy by then, I probably won't want one. I want one now. Right now. (Stomp Stomp Growl)

Has anyone noticed how, even in desperate circumstances, will power is hard to come by?

Big Weekend

Earlier this summer, the kids and I invited our neighbors to join us in a neighborhood garage sale. Last weekend we had our sale, and more than 50 homes participated. It was an exhausting weekend, but, collectively, it was worth the effort. All of us were thrilled to get rid of stuff (although many of our things just traded houses right here in our neighborhood), we earned some cash, the kids got business experience selling Pepsi, we met neighbors we didn't know before, and at the end of the weekend our neighborhood donated a trailer truck full of items to the local Association for the Retarded and Cerebral Palsey Thrift Stores (ARC).

Other garage sale fans out there ought to check out this site: http://garagesalefinder.com/. The lady who runs this nation-wide site created a map for our community sale that we then were able to make available in our online advertising on Craigslist. It worked like a charm. Resellers of all kinds came out in force, and largely thanks to them, we all have more room in our garages now. One family even drove here to Denver, all the way from their small Kansas town, just for our sale. They came with a pick-up truck and a list of needed items for their friends and family, and were shopping garage sales instead of department stores.

Our kiddos had so much fun. I told them they could have the money from whatever they sold, so when it came to cleaning out their closets, I had almost no resistance. They each set up a blanket with their things on it, and watching their excitement each time they sold something was almost as much fun as selling my own things. One of the boys bought a Hot Wheels race track from a neighbor for $2.00, and almost immediately resold it for $5.00. This is our version of Junior Achievement, I guess.

I can't believe how quickly the summer is coming to a close. School is right around the corner again. Oh, well...

I have a routine visit with the oncologist next week. Everything still seems to be going well, except for an accumulating list of side effects from the Tamoxifen (my daily chemo pill that's intended to reduce recurrence risk). I'm doing some serious thinking about that medication, and I'll be discussing some of my thoughts with the doctor. I don't expect she'll be very happy with me. But she's a very reasonable doctor and in the past has been open to non-standard approaches.

Another Book Review - Johnny Tremain

Johnny Tremain, Esther Forbes, 1943, Newbery Medal Winner

In honor of Independence Day, I wanted to post my review of this well-know book. Unfortunately, it seems to have fallen from favor in recent years, and I hope to encourage folks to enjoy it again.

I read this book for the first time many years ago. I enjoyed it then, and I thoroughly enjoyed it when I read it again recently.

I have heard others describe this book as boring, and perhaps that is because Esther Forbes’ descriptions are lengthy and detailed. The time in which she wrote valued descriptions in literature. But I was awed by her skill with words and history. Her writing immediately drew me into her setting. I laughed many times at her subtle humor, and as I read, I felt as if she were telling a story she herself had witnessed. Her characters were intricately developed and life-like. Her ability to fully color her story’s people was phenomenal.

Johnny, as the main character, is a pure pleasure to watch grow from a likeable, gifted, arrogant, self-centered fourteen-year-old boy into a sobered, more thoughtful, still arrogant young man. His life in Boston as the Revolutionary War approached is fascinatingly chronicled. His thoughts and feelings about the people in his life are touchingly complex. British-occupied Boston in the 1770’s is a very interesting setting in which to explore the complicated reactions a young man has to an enemy he is beginning to know and appreciate as individuals.

I think this book has value on several levels. It is a superb example of masterfully written children’s literature. The story is plain-old interesting. It offers pointed observations and powerful lessons in human nature. And its Revolutionary War setting is an unforgettable history lesson.

Read this book. Read it to your kids. It’s worth every minute.

I noticed that Esther Forbes won a Pulitzer Prize for her book Paul Revere and the World He lived In. Re-reading Johnny Tremain has made me put Paul Revere at the top of my want-to-read list.

Summertime...

...and the livin' is easy. Actually, we are finding ourselves just as busy as ever, just not with school work. (Yeehaw!) The weather has been beautiful here in Denver. A little hot on some days, but nothing like what you folks in the Southeast have regularly. I've felt well for the most part. The Tamoxifen that I'll be taking for another 4 1/2 years pulls some mean tricks on me sometimes, but I hope to adjust as time passes.

Meanwhile, life is going pretty smoothly. My topiary-hair continues to grow, but the newer growth is pretty straight. I figure the next time I get a hair cut, most of the curl will be gone. It still gets really bushy when the wind blows or when I don't use the right styling products. I'm trying to work up the humility to post a picture of a bad hair day for everyone's enjoyment. It would certainly make you laugh.

Gilead was dedicated to God on Mother's Day. (The pictures below are from that Sunday.) It's hard to believe that exactly a year before, we were in the hospital with an itty bitty little preemie, waiting to see if he would breathe sufficiently on his own, and wondering what kind of damage the chemotherapy had done to him. So far, he is doing remarkably well. His development has been normal and a pleasure for all of us to watch. He's trying to say words now. One of his favorites is "rum-rum". You'll have to imagine that with a little bit of a growl - it's the sound he makes when he's riding a toy with wheels or playing with cars. He has cute little efforts at words like "don't touch", "uh-oh", and "night-night". Having seven children doesn't make these little growing steps any less exciting. Recently, one of his favorite things to do has been to climb the stairs and throw Hotwheels through the railing to the wood floor below - not good for the cars or for the floor, but it makes a really cool noise. Anything that makes noise is exciting - vacuum cleaner, lawn mower, weed eater, hammers, noisy siblings, music. I'm glad he likes it because he's sure not going to get away from it.

A Camera Story

I mentioned last time that my Canon PowerShot camera (which I loved) got broken at Christmas. After calling Canon and finding out how expensive repairing the broken LCD screen would be, I decided to look for a camera on eBay. I almost immediately found a slightly used PowerShot for $85.00 with free shipping (about 1/3 of the retail price) and was excited to snap up that deal. It works just wonderfully, and I didn't have to worry about learning different features since it is identical to my old camera.

But the most interesting part of this story is that while I was looking for a replacement for my camera, I noticed that people were succesfully selling broken digital cameras. I decided to put my damaged camera on eBay with a complete description of needed repairs and a starting price of $0.99. Imagine my surprise when the auction closed, and the camera had sold for over $50.00!

So you might be wondering where the pictures are, since I have a working camera again. Well, now there seems to be a problem with Blogger because I have not been able to upload any pictures over the last several days. I don't think it's a problem with my computer since I've uploaded in other places. I'll keep trying and if anyone has any suggestions, just leave a comment.

Chiropractors and Topiaries

As I was driving home from a birthday party last weekend, the pressure in my chest became so irritating, that I was sure I could not live with this symptom indefinitely. The kids and I stopped to see our chiropractor on the spur of the moment. He adjusted me and explained that a couple of misaligned vertebrae could have been causing the heaviness in my chest, but he didn't make any grand promises. Over the next two days, however, my cough went away, and I began to feel much better. I haven't had any trouble since. Yea for a good chiropractor!

And yea for a good beautician too. Jen gave me another hair consultation last week. These appointments can hardly be called hair cuts yet. My hair has become wildly, tightly curly. It's fun, but as it grows, I don't know what to do with it. My sweet husband called me Topiary Head, which I thought was a hilariously apt description for some of my bad hair days. As Jen was handling my hair at her salon, she referred to it as The Beast a couple of times. I really liked her styling ideas. But since my camera broke at Christmas time, you'll just have to imagine what I look like as a nicely styled topiary.

More Tests

I found another lump under my arm in February, so on Monday afternoon, I went to the oncologist to have it checked out. She was able to get me right in for an ultrasound and then (amazingly) a biopsy too. Usually, that would have required three separate appointments. Then she shooed me on over to the emergency room for a round of tests on my heart and lungs. When I had told her that I’d been having pressure in my chest for several weeks as well as a dry cough, she said, “Amy…people go to the emergency room for that. Did you think about that?” I had thought about it, and I’m familiar with how fruitless those visits often end up. But Jon and I were also worried about these symptoms so, off we went (…after we went out to eat for a belated Valentine’s date. We’d both missed lunch, the kids were being cared for, and I figured that after weeks of pressure in my chest, time to eat a meal wouldn’t make any difference).

In the emergency room, a series of tests were performed on my heart and lungs, all of which came back resoundingly normal. I was released before 11:00 p.m., and we were home and in bed before midnight. The next day the doctor called to say that the biopsies had also come back entirely normal. This was exciting, especially because what had been removed for biopsy was a lymph node that had been missed during surgery a year-and-a-half ago. It was completely clean of cancer or abnormal cells.

I’m still having pressure in my chest and a cough, but now, the assumption is that my heart or the muscles on the chest wall have been affected by the chemotherapy and/or the radiation. From what I’ve learned, these symptoms may come and go over the years. I hope they’re mostly gone.

All these tests took up only half of a day. Jon and I couldn’t have been more pleased. This could have taken most of a week – or even more - and lots of miles on the interstate. Instead we had one busy day, that’s all done, and the news was all good. And we didn’t have an accident on the way home.