Short intro about the blog

This blog is about our journey to healing with Grade 3 Anaplastic Oligoastrocytoma



Tuesday, January 15, 2013

The Hardest Journey

I don't even know how to begin writing this post. I haven't written in a long time, and it feels strange doing so. I used to love to blog. I really did. I loved researching topics and sharing with friends and family all the things Adam and I were learning. But, last month something happened that devastated me. It devastated me so deeply, that I find it very difficult to write and share my feelings anymore. This blog was my pride and joy. But, I discovered that a small group of people were taking my words, distorting them, and presenting them in a way to defend their own beliefs about alternative cancer therapies. The choices that Adam has made regarding his cancer treatment were ridiculed. And comments were made by readers that implied that I was an overbearing wife, forcing my ignorant beliefs on my husband, and therefore costing him his chances of survival. It still hurts writing about it nearly one month later.

There is a hard-core group of skeptics out there who insist that the Burzynski treatment is a scam. They have never had cancer. They have never been to the Burzynski clinic, nor have they ever received treatment there. They do not know one single person who has been a patient at that clinic, and they have no evidence of any former patient being dissatisfied with the treatment received at the Burzynski clinic. But, they have their beliefs. Fine. Everyone is entitled to their own opinion. The problem is they are taking excerpts from patient's blogs about their struggles with cancer, twisting them, and presenting them as damning facts in an attempt to prove that Dr. Burzynski is a charlatan. The most shocking are the judgmental statements about parents who chose the antineoplaston treatment for their son or daughter, and watched their dear child lose their battle despite the treatment. I was angry about the way they used Adam's story, but I cried for the parents who lost their children to brain cancer, and the callous way someone could showcase their story on a website, only to ridicule their decision.

Let me say this about the Burzynski Clinic. Keep in mind I have been there. I was there for 5 weeks. I met Dr. Burzynski several times, and met nearly everyone that works in his clinic. His treatment works. It does not work for everyone, but it does work for some. He doesn't claim a 100% cure rate. But, I know people who have been cured by his treatment. On our journey, Adam and I have met a lot of people with brain cancer. Most of those people we met through the clinic. And some of them are cancer-free today. And it is due solely to the Burzynski treatment.

One last point about the patients of the Burzynski Clinic. The skeptics would have you believe that everyone that walks through the doors of Dr. Burzynski's building is clueless, ignorant, and has been unfairly taken advantage of. The patients I met were the most educated people I have ever met regarding modern medicine and cancer treatment. And I mean all cancer treatments, including the conventional methods. They have spent thousands upon thousands of hours reading about chemotherapy, radiation, all the cancer drugs available, what is available in clinical trials, and every alternative approach ever attempted to defeat cancer. They know it all. They know the statistics and have read all the studies. They often know more about cancer than many oncologists. They understand how and why it develops, and they understand how it can be controlled. I am proud to be a part of this club. And we all found our way to the same place.

All that said, I now want to share something I discovered today. Often in alternative circles, one statistic regarding chemotherapy gets thrown around a lot. The 2% thing. A study was conducted in Australia regarding survival rates of cancer, and the conclusion was that chemo only improved survival rates by an average of 2%. That doesn't mean that only 2% of cancer patients receiving chemo survive past the 5 year mark. But, some people have wrongly interpreted it that way. What it really means is that if everyone that has ever been told they have cancer, be it Stage 1 prostate cancer or Stage 4 lung cancer, has an average “survival” rate of 60%, then chemo will increase that percentage by 2%. The term “survival” or “cure” refers to the 5 year mark in the cancer world. If you live 5 years after your diagnosis, you are considered cured. If you die one week later, you still maintain your place on the cure list. Now, if you have a 60% chance of making it to 5 years, then this study proved that chemotherapy will increase your chance by 2%. So, after chemo, you will have a 62% chance of survival. It's different from the idea that only 2% of chemo patients “make it”, but it isn't exactly a glowing report either. And it depends entirely on the type of cancer. According to other studies, cancer patients with high grade astrocytomas have a 3% survival rate. According to the Australia study, brain cancer patients who receive chemotherapy increase their survival rate by 3.7%. Now you might say that doubles their chances, and you would be right. Having a 6.7% chance of living for 5 more years does sound better than a 3% chance, but then you have to consider the side effects of chemo and the quality of life you could expect afterwards. The quality of life issue is a major deciding factor for Adam, and that is why he feels so strongly against trying any sort of chemotherapy. For others, it may not be a factor, and therefore choosing to try chemo makes sense. That's the thing about cancer. Every single patient is on their own journey. Every single patient has to decide what is right for them. Many people have complete faith in the medical system, adore their doctor, and will do whatever they are advised to do. They aren't crazy about researching, or maybe they just aren't very good at it. Or maybe they have read the studies and countless books about cancer, and have reached the conclusion that for their cancer, for their stage in life, and for their particular situation that modern medicine is the only way to go. I would never criticize or judge anyone for the choices they made regarding their cancer treatment. REGARDLESS of how it turned out. Adam and I have spent a full year learning everything we possibly can about cancer. We have dedicated ourselves to researching different aspects of cancer development and treatment, and have combined our knowledge and decided together (with God's confirming signs) how to proceed. We have absolutely no regrets. And I sincerely hope that no one else on this incredibly difficult journey has regrets either. We are all doing the best we can, and we all have the same hope and dream. And that is just to live as many more days as possible.

3 comments:

  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?

    Thanks,

    Cameron

    ReplyDelete
    Replies
    1. There are no contact details on your profile or I would have emailed you directly. I would be happy to answer any questions you have.

      Delete
    2. Do not respond to this person, it is a scammer.

      Delete