CHAPTER 9  Posted August 18, 2008

I have been agonizing over a major decision regarding the direction of my care. I am struggling with whether I should stay in the clinical trial or beg out. I have been experiencing some very tough side effects or symptoms since April. Whether one or all of these symptoms are related to the Avastin seems to be anyone’s guess. My normally low blood pressure is now high. Well, high for me yet not for my doctor or his staff to be concerned. I can feel it though. The fact that as long as my blood pressure is in their acceptable range is okay with them, doesn’t sit well with me. It is high for my body! When inquiring about my higher blood pressure, the reaction of course was to write a scrip for something else to address it. [[Ah, the allopathic tangled web: since they only treat a symptom rather than you as a unique, whole person, they miss the big picture. The one that involves prayer, placebos, interconnectivity within our perfectly made bodies. This is great in a trauma situation, but doesn’t work quite as well in other medical situations. Yes, let’s remove the gall bladder rather than address the real problem, diet. Sure, the symptoms go away, but, hey, didn’t I need that gall bladder for something? ]] Anyway, high blood pressure is a noted side effect of the Avastin.

The other symptom I have had since December is my constantly dripping nose. Now that my blood levels are back to normal my nosebleeds have stopped but the dripping cannot be ignored and leaves me with a very painful nose. This may be a symptom of the Avastin if the dripping is not a product of my sinuses but rather my septum eroding. I guess I need to compare notes with a long term cocaine user. If I was still in my twenties I could probably find a cocaine user, but now that I’m 54 my life is hardly that exciting anymore. Yes, erosion of the septum is a side effect of the Avastin.

The most significant side effect is the muscle pain that I have also been experiencing since April. This pain is so significant that there are days when I can barely move my neck. This pain goes through my entire back and if I sit in one position for longer than 10 minutes, I stand back up like an arthritic 80 year old. The mornings find my hands so stiff that I can barely make a fist. From my various readings, this is either a symptom of a highly acidic body (very bad for general well being, and worse, an inviting internal environment for cancer cells!) or perhaps dehydration. I have been spending a great deal of money having my alternative care providers help me retain flexibility and reduction of pain in my neck. This is not one of the currently identified side effects of Avastin, so I have been pushed off to a neurologist for further study. I know that there is nothing wrong with my back and neck but I am going to have an MRI just to prove it. I will spend some time prior to the MRI begging my body forgiveness for this intrusion, but it needs to be done.

Since this is a blind trial, the only person who knows what is going in that bag every three weeks is the pharmacist at the Zimmer Center. I could be getting a placebo. If I am getting a placebo then I have some chronic problems that really need to be addressed, but I’ll only know once I’m off the trial for a few months and they don’t subside on their own.

I go back and forth in my head over the decision to bail out of the trial. Seems the old Pat, the person who would stick to any commitment regardless of the price I had to pay physically, emotionally, and mentally, is still trying to exert some control in this decision. While the new Pat, the one that is learning to rely on her intuition and what her body is telling her, realizes that right now it’s more important to do what is best for me. There is also the concern that I am making the wrong decision about bailing out as it relates to my longevity. Perhaps this drug is making a difference in my body’s ability to fight the cancer? Could I tolerate the symptoms if I new this for a fact? Of course. That is where the quality of life aspect enters the picture. What if the alternative that I have chosen, to allow nutrition to heal me and keep me well, doesn’t work? But then again, what if it does? Tomorrow is the day I have to either voice my decision to my doctor or sit in the chemo chair for another round of Avastin.

As I spend this Sunday morning reading and meditating the thought occurs to me: Why am I agonizing (which is not a good thing for me physically because of the stress associated with it) over a decision that is basically irrelevant. I am going to live longer or I am going to die sooner and no one knows what is going to impact that. Not the pharmaceutical company, not the people who are testing the drug, not my doctor, not I. Perhaps my lifestyle changes will allow me to live a long, healthy life. Perhaps the cancer was a wake up call and I answered it. Perhaps I have absolutely no say or control in this. It just is what it is. I am creating and reacting to fear by projecting into a future that no one can foretell. Over the last several months I have ingested a tremendous amount of information about a variety of interrelated subjects and feel fairly confident that my intuition is being informed by all this. I have to go with my gut and let the chips fall where they may. Why agonize over it.

As I continue to research and explore various health theories, I picked up a book that was written almost 30 years ago. I can’t help but laugh at how the Western medical paradigm has not shifted at all in that length of time. In 1979 the medical community was just starting to accept acupuncture as a system that might be able to ease a patient’s pain. Although some enlightened doctors may be willing to suggest someone try acupuncture they still haven’t fully embraced it. Neither have they fully embraced chiropractic care. Whether or not an allopathic doctor embraces these treatments is irrelevant, but what is relevant is that until they do, it’s rare that the patient can have these treatments covered by their insurance. I don’t give a flip that my doctor thinks that acupuncture and chiropractic treatment is voodoo. But by not accepting these practitioners as “real” medical doctors most people cannot afford to seek their treatment and the tremendous benefit that it offers. That infuriates me.

The other piece of this is the attitude that most patient’s have regarding their own illnesses. They place their physician on such a high pedestal that no other advice has any merit. They don’t even trust what their own body is telling them. A good example is lactose intolerance. I have probably been lactose intolerant for years, but it only became a real problem when I hit 40. So I started taking one of those products that allows me to continue to consume dairy. All along I knew that dairy was “poisoning” my body. How did I know this? By the way that my body reacted when I consumed dairy: intestinal cramps, bloating, diarrhea. Yet I knowingly continued to poison my body. As long as the drug I consumed with it took away the symptoms everything was okay. I watch the ads for gastro drugs and just laugh at how the actor can take his pharmaceutical and still eat all the greasy, fatty, animal protein that used to cause him such great pain and sickness. Hello!?? Your body doesn’t want you to put that crap in your body, that’s why whenever you eat that stuff you get sick. God forbid we have to make any sacrifices for our health and longevity.

But getting back to those pedestals, doctors know that a great many of their patient’s take their word and advice as sacrosanct. In knowing this, if they don’t provide their terminal (by Western medicine’s limited understanding) patient’s with alternative options I firmly believe they are writing them a death sentence. “Sorry nothing we can do here. Go home and die.” What would it cost them at this point, when allopathic medicine has done all it can, to suggest to a patient that they should consult with a homeopath, nor naturapath, or an acupuncturist, or an alternative nutritionist? Perhaps they might feel that they should have made those same recommendations sooner and couldn’t handle the guilt?

Rick and his wife Debbie and I met in SC to visit with our son and new granddaughter a few weeks ago. Rick has been extremely supportive and concerned about my health yet when I told him I had given up sugar, processed foods, and foods that leave an acidic ash once digested, he commented that if he were in my shoes he would be eating and drinking everything he loved with abandon. I told him that I could do that also, but then that would mean that I had accepted this diagnosis as a death sentence. I am going to live and live well, and to do that requires a change of lifestyle, the most significant piece being my diet. I wrote about alkaline/acid back in my second blog. Since then I have continued in my research and reading on this subject. It just makes sense. Granted it is not easy to change your diet, but if you are in a health crisis that may kill you or is ruining your life, why not give it a shot? Yet this is never discussed at most cancer centers. Food heals. The right types of foods that is.

When I was at Chapel Hill after my surgery, the only food offered to me was a powdered soup that contained nothing alive. It was full of preservatives and other chemicals and maybe some powdered tomatoes. I was also offered a cup of sherbet that was loaded with sugar, fructose, corn syrup and preservatives. I couldn’t stomach either, so I basically fasted for 6 days. At my local cancer center nutrition is only discussed in terms of the USDA food pyramid and increasing your protein consumption. Preferably animal protein or chemical/synthetic protein. This is the opposite of the type of nutritional advice that should be given. It is deadly advice. (Not to mention the products they push such as Ensure and Enliven which are either loaded with corn syrup or have aspartame as a sweetener. A neurotoxin.) Perhaps our bodies can handle this type of advice when we are well, but when chemotherapy is ravaging our cells we need to eat the right type of healing foods.

Eating well does take a great deal of work. The extra work is partially based on the fact that I have been eating a certain way for so many years and now I have to think and plan before I buy. And to ensure that I have a lot of fresh produce, I have to shop a little more often. Hey, that was what our grandparents had to do, yes it was time consuming but healthy. I had been flirting with organic before I got sick, but because of the higher price tag, I went back and forth. I hadn’t been eating much animal protein for several years but I wasn’t a vegetarian, although leaning that way. But now I’ve almost taken all animal protein out (I still eat wild caught salmon or organic chicken once or twice a month) and replacing it with the protein I can get from vegetables, beans, and grains. I buy organic and I’m moving towards a more raw diet. I’ve juiced on and off for several years but now I’m juicing daily. I’m doing a lot of sprouting and will be taking the next step which is growing grasses and micro greens. Luckily my friend Meg (Shelton Herb Farm) sells micro greens so I can buy them from her in the interim. The raw piece is going to take another hunk of time as I try out new recipes and techniques. Cooking was effortless because I had been doing it since I was a child. With the raw diet the change will require a lot more work until it becomes second nature. I will be dehydrating food so that’s another learning experience. It is actually pretty exciting.

The time consuming piece associated with providing the family with nourishing meals is what drove the food industry to provide us with convenient, easy options for our food consumption. Unfortunately in order to do this the living food had to be processed and shot full of preservatives and other chemicals including artificial flavors. The natural healing vitamins and minerals were destroyed in the process and replaced by synthetic replicas that our bodies not only have trouble assimilating, but sometimes actually react to as invaders. One of my college roommates, Peggy, was a nursing student. After 30 years, I still remember her coming home from a nutrition class and stating that we can get all of our amino acids by combining lima beans and corn. I was obviously awed by this revelation because I have used this combination over the last 30 years for that specific reason. I laugh because now I am revisiting pieces of chemistry, biology, and nutrition that I never knew would be so relevant to my life.

There are challenging theories on how those who develop cancer have similar types of attitudes about life. And that many cancer patients really do not want to get well. They have become their cancer. I had a moment of thinking that echoed this. I actually wondered what do I do when I am no longer the cancer patient? Over the last 9 months everyone has related to me as the cancer patient. When you’re pregnant you have a baby and then become a mom. I don’t want to be a “cancer survivor”. I want to be well. I want to be healthier than I was in the years leading up to this health crisis. As a matter of fact, now that my hair is growing back in, it is not so apparent that I had cancer. When someone compliments me on my hairstyle, I have to catch myself from saying, “Thanks, but I didn’t style it this way. It’s growing back from the chemo.” I think a piece of it has to do with feeling a little superstitious or arrogant about saying “I HAD cancer.”, when in the back of my mind I know what the ovarian cancer statistics say: you can feel really well for 6 months to a year and then head back to chemo to start this thing all over again. But the next phase of my wellness program involves just that: stating wellness and never doubting it. Will discuss this piece next chapter.

I cancelled the trial on July 14^th. I have known for a while that my personal philosophy about wellness and health has been evolving (the pharmaceutical companies and medical community would say “devolving”) and I couldn’t integrate this with taking the Avastin. Integration in all aspects of our lives is key to wellness, so I’m finished. Now we’ll wait and see whether some of these side effects start to ease up.

It’s one thing to be alive. It’s another to be well. I don’t want to just be alive; I want to be well and full of life!