I have debated for months writing this diary. It is my response, in a way, to a diary from months ago, My Cancer Came Back. I read her entry with such despair, as I do all cancer stories. It is a terrible illness, one that leads to so much pain and destruction. I know.
Updated I wrote this dairy after many months of thought. Ultimately I thought it might help someone. That's it, I will help if I can. It may be ignored, but maybe someone will see, and think. I will go watch Jon Stewart now, I can, I am still alive.
I was diagnosed with Lymphoma, B-Cell, fast growing on Friday April 13th, 2007. Two years later, on April 13th again, I was diagnosed for the 4th times in two years. It started with a small lump in the back of my mouth and it grew to a huge swelling in my cheek and jaw.
After being sent to an ENT specialist who waited 6 weeks before doing a biopsy ("No,no, I don't think it's Lymphoma") while it kept growing,they found Lymphoma. That started my two year decent into hell with cancer.
I had cancer 4 times in two years, all Lymphoma. First in my jaw. Next it had moved to my brain 4 months later. Then to my eyes (pretty rare) and finally to my spine (spinal tap)and thus the fluid around my brain.
I had everything oncologists (doesn't that word just send shivers up your spine)had to offer. Two separate rounds of chemo, 17 times. The first, 6 standard rounds for my jaw spending 6-9 hours a day. Then 9 hospital stays for a different type of chemo later for the brain. While in the hospital I had seizures which nearly killed me and left the right side of my body 80% useless. I have that back now. Then radiation over a year ago on my brain, I could not hear at all. I had two separate eye surgeries, to remove the Lymphoma in the fluid in my eyes. I got vertigo a year ago last February, I still have that. They were not sure but thought that and the hearing problem were a result of a tumor near my spinal column.
This is just a small portion of what I went though. I started saying no early on when they wanted to do radiation on my jaw just so it would not come back there. The results of the radiation would have been devastating and permanent. Loss of taste buds, jaw bone breaking down and my teeth rotting and coming out. I said no. My oncologist was not happy. More chemo.
And I continued to question over those two years, more and more until finally I said no more.
On June 1st last year my brain oncologist told my of the spinal tap. He wanted to put a port in my brain (I already had 2 in my chest) and do more chemo. This was not a "cure" but if I did nothing, and he counted on his fingers, I would be dead by October.
So I said no more and prepared to die. I had changed so much and was at peace with my death. I would hopefully have a lovely summer with my family but I could endure no more.
Then I went to the health food store to get Vit D. A high school friend who owned the store saw me, did not recognize me (I had no hair from the radiation and looked horrible. He gave me a book, Outsmart You Cancer by Tayna Pierce. That day he saved my life.
I have done many alternative things that have helped me through this from the beginning. I have people who do acupuncture, Reiki, the Alexander Method and Protocel, which I found in the book. It has rid me of my cancer.
Over a year later I am thriving and still alive. I will never be like I was before cancer, they did too much damage, but the cancer is gone. I still have vertigo, but I am working on that. I take no medications now, and believe me I had dozens. I can sleep again at night. I still get very tired some days, my energy level is down, but I am alive.
I think why I am writing this is because I have seen how bad our health system is. We need to start taking responsibility for our own health, asking questions, looking for information, finding alternatives. I thought I was doing everything right, never smoked, exercised, kept my weight down, didn't eat meat, always organic. But we Americans are killing ourselves with obesity, smoking, diabetes, heart problems which have all risen.We need big changes in how we look at health and ourselves
I will never do traditional cancer treatments. Billions and billions are being spent on cancer treat (they spent well over a half a million on me) and the best it seems they can come up with is poison and destruction.
The endless bills have stopped coming. The doctors visits (every week) have stopped. I now have my life back. I learned hard lessons, but came out a better person. In spite of everything I worked for health care reform. If I had not had health insurance I would be dead. I would not have survived to the point where I could find something else. All people do not need to worry about losing everything while they are sick. But we need to change this system
And,in my better months (and before my cancer) I helped elect Sherrod Brown and Barack Obama and hope to help Dems here in Ohio this fall.
And maybe this diary will be ignored, I hope not. Please do not write and tell me I'm crazy and dangerous. This is just my story, hopefully you will find it helpful. That's my goal. To help and to start making changes. I am not sure how, but we need to, desperately.