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Following doctors orders is what we're supposed to do, but sometimes it's a personal choice.
It's amazing how childhood tendencies toward performance-based acceptance carry over into adulthood. As the firstborn, I was raised to be the "good girl." For the most part, I did what I was told, when I was told. I obeyed the rules. I met expectations. I learned to please people and in so doing, I learned to push my wants aside. The waters were always smoother when the boat wasn't rocked, and I liked smooth sailing ... but smooth sailing is for dreamers. The reality is that the water isn't smooth for long.
When it comes to doctors, I'm a really good girl. I trust them. I listen to them. I think they know a lot more than I do because they've gone to medical school. They've done hours and hours of residencies and internships. They are the experts. I am not. So when I was recently told by a new oncologist he wanted me to begin taking Aromasin (exemestane), I didn't question him. I listened as he told me it would keep my chances of a recurrence low. Surely he knew what he was talking about. He must have done research on the medication. He must have read my file and determined this would be a good option for me — or maybe not.
Good girls don't voice their opinions. They are compliant. The obey orders. I was a good girl. When I left his office, I was not feeling like a good girl. I was upset. I was angry. I wasn't necessarily angry at the doctor, I was angry at myself. I had wanted to speak up. I had wanted to tell the doctor I didn't want to take the medication, but he had breezed in and breezed out in under five minutes. I wasn't happy but I walked out of his office without saying a word. I was a good girl.
On my way home, I struggled. Feelings of unfairness swirled around in the pit of my stomach. I felt like I was going to be sick. Why was I such a good girl? Why couldn't I speak up? In the seat next to me lay the printed prescription. I wanted to roll down the window and let it accidentally slip away.
I'd read about Aromasin while doing research on anti-hormone therapy. There were three aromtase inhibitors doctors usually recommended for women who were post menopausal: Arimidex (anastrozole), Aromasin and Femara (letrozol). All of these drugs acted in a similar manner although the side effects varied. I had already tried Arimidex and had to stop it because of the debilitating side effects. I was afraid of trying another drug in this category, but I would be compliant. The doctor knew best.Reluctantly, I took the prescription, went to the drugstore and got it filled. At home, I opened the bottle and looked at the 30 tiny, white pills inside. I wondered how something so small could be so powerful. Placing the cap back on the bottle, I sat it on the counter. I didn't want to take the medicine just yet, though I knew I would eventually. I was a good girl.
The medication sat on my counter for several days. Every time I passed the bottle, I could hear a voice inside my head saying "Be a good girl ... take the Aromasin." There was a war going on inside my head: Part of me knew I needed to be good and take the medicine. The other part of me wanted to throw the pills away and forget about them. I let the war wage on for four days and then, I gave into "good girl syndrome." On January 1, I opened the bottle and popped one of the tiny pills into my mouth. Yes, I was a good girl. I'd followed doctor's orders.
It was important to me to keep a log of how I felt on the medication, so I began a journal. Days 1-4 were great, I experienced no side effects at all. I was pleased and thankful I'd been willing to follow through and give this medicine a try. I couldn't help but think that this pill would be magic. Maybe this will be the pill I've been waiting for all along ... but that was before the medication had a chance to build up in my system. That was before the side effects began.
I continued keeping my records and on day 5, I began to get some really weird headaches just to the back of my left eye. They didn't feel anything like a regular headache. They didn't feel like a sinus pressure headache. The headaches felt much more complicated, deeper and more severe. I was concerned, but I tolerated them. If I was going to experience any side effects at all, I'd rather deal with bad headaches than some of the others maladies. The headaches continued. On day 7, I started getting depressed. Headaches and depression are not a good combination. I'm not a person who gets down in the dumps; I'm usually very upbeat and happy — more Pollyanna than anyone I know. But this tiny little pill really packed a punch. It was strong medicine and it was doing a number on me. I didn't feel so good any more. In fact, I was feeling pretty bad.
Day 8 brought a huge shock. On the shower floor, there was a lot of hair. At first I thought it was a combination of both mine and my husband's hair. I cleaned it out and the next day noticed even more hair. My husband commented on the amount of hair he was seeing. He asked me what was happening. I told him one of the side effects of Aromasin is hair loss. He was concerned and so was I. Over the next few days, I noted more and more hair. This was not good. There was hair in the bathroom sink, hair on the floor, hair in the shower, hair everywhere. As I looked in the mirror, it wasn't immediately apparent that my hair was falling out, but as I brushed through it, I could tell my hair was much thinner than usual.
Days 9-14, the side effects got worse. I didn't feel like myself. I was continuing to have the horrible headaches. I was sad. I was depressed. My hair was falling out and now, I had no appetite. The lack of an appetite could have been a good thing for weight loss and believe me, I did lose weight: 11 pounds to be exact. I just didn't think I could continue with all of the side effects compounding. My husband and I talked about it and we both felt it would be best for me to come off the medication. The scale of quality of life vs. quantity of life stood before us.
While there is always a chance of recurrence, we weighed the options. We had to ask ourselves some hard questions. Is it better to take this medication for the next five years and have a terrible quality of life and still have the possibility of recurrence? Is it better not to take the medication, rely on our faith in God for complete remission and feel good? We both chose the latter option.Each breast cancer patient and survivor has to decide what is best for her (or his) own health. There are so many factors to consider and they are very personal to each individual.
My decision to stop taking the Aromasin may or may not be the right one, but I've prayed about it and I have peace. Although I am a good girl and I wanted to do what the doctor recommended, it just didn't work for me, but I did try. I know my God is able to protect me from future recurrence and I trust Him more than any medication that any doctor could offer. Being compliant doesn't mean following blindly after what a doctor recommends. All patients need to be well informed and do research on the possibility of side effects, etc.
If the Aromasin hadn't caused me any physical side effects, I may have continued it, but experiencing a continuing increase in symptoms, I felt it was not worth the risk to continue on with it. Another side effect Aromasin produces is the possibility of severe bone thinning and bone fractures. I did not want to take that risk and who knows when I might have begun to deal with that.
So, I'll return to my natural health care regimen because it's worked well for me so far. Every day I take vitamin D2, magnesium, potassium, green tea, turmeric, chlorophyll, ashwagandha and vitamin B12. I also stay away from processed foods and eat a more vegan diet. I will continue doing research for more ways to combat cancer naturally. Apple cider vinegar is a great way to put my body into a more alkaline state and cancer hates living in an alkaline environment.
I'm happy with my decision. I expect to get flack from my oncologist when I tell him I've decided not to continue on this medication. I understand they have a protocol they recommend to patients for each stage of cancer treatment and he's just doing his job.
This good girl has finally decided it's OK to stand up and fight for her rights. It's my body and I have to do what's best for me. I feel really good about my decision and look forward to getting this nasty medication out of my body over the next couple of weeks. I can't wait to return to normal and to start feeling better again.
I'm sure there will be many of my friends and family who won't agree with my decision to disregard the doctor's orders. There may be some who feel it would be more beneficial for me to take one tiny pill a day rather than the large quantities of natural supplements I take instead. While I value their opinion, I must choose what's best for me. I don't have a death wish. I don't ever want to experience a recurrence, but none of us are guaranteed tomorrow. So I'll take each day as it comes and be thankful for those I'm given. And really, that's all any of us can do.