Saturday, June 29, 2013

My Drug Holiday Is Not What You Might Imagine

I have been on a "Drug Holiday" for the past 3 weeks. If you've never heard this term, you might think I've been intoxicated while on vacation. It sounds like I've been lounging on a pile of cushions on the floor of a dimly lit opium den in some far-away exotic Asian country. Or maybe I've been lying on a beach in Jamaica with the aromatic smoke of ganja being carried away on the ocean breeze. Amsterdam might be a great destination for a holiday of drug use. But, no, I'm home in Vermont and the drug holiday actually refers to the fact that I have just spent 3 weeks not taking my exemestane (Aromasin), the estrogen-blocking drug I've been on for 3 and a half years. 

Blocking the small amounts of estrogen that my adrenal glands and fat cells make seems to be one of the crucial things that have helped my estrogen receptor-covered tumors to shrink. However, the side effects have been debilitating. Since my last PET scan looked so good, we all (3 oncologists and the rest of my team) agreed this was a good time to take a rest from the drug, take a "drug holiday," and see if we could:
  1. give my body a rest and a bit of relief.
  2. see if I feel better off of it and distinguish which of my symptoms are side effects and which are not.
  3. switch to another drug after the 3 weeks that does the same thing with a (hopefully) different side effect profile.
On day 4 the feeling that my joints were going to EXPLODE began to fade. I still feel a fair amount of pain, but without the apprehension of impending explosion. What a relief! What's left is some mix of garden-variety arthritic degeneration symptoms, bone pain from the sites of metastasis, along with the effects of being one year post my last dose of Zometa (zolendronic acid) and having my osteoclasts come back into action. For you non-physicians, this was a drug I took for 2+ years that inhibited the breakdown of bone. The theory is that if you inhibit the cells in the bone that cause it to break down (osteoclasts) and allow remodeling, then a tumor can't spread through the bone. The bone increases density and creates a wall-like effect that won't allow the tumor to break through it. It also leads to bones that get "stale and brittle" because they haven't been remodeling. I have a lot of catching up to do and although it's a good thing, it happens to be somewhat painful.

By the second week of my drug holiday, I found myself in San Diego at the annual meeting of the Osteopathic Cranial Academy feeling miraculously not fatigued. I was tired, but not fatigued. There is a huge difference between those two feeling states. This is the first time in 3 and a half years I've gone 2 weeks without an episode of fatigue. It's amazing to feel a little bit more oomph. But just as all things in life are, this state is transitory.

Now I am facing going back on a drug that may or may not have the same side effects. Tonight I take my first dose of Femara (letrozole). I'll know how I respond within the next few days to two weeks. I am advised to take one of this category of drugs for the rest of my life. The original projection was for the rest of my life to be a year or 2, so that now that I'm going on 4 years and getting better, not worse, the prospect of an unexpectedly long life on this drug is daunting. I keep reminding myself that I'd rather live with joint pain than die of cancer, to keep it in perspective.

Whatever happens when I resume the medication will happen with me knowing the difference between me and the drug. If I can distinguish the sensations that are caused by the drug from the natural sensations of my body, I will attempt to not take them so personally. I know that sounds odd, because I'm still the one feeling the pain,  but if I can attribute the feeling to something external, I hope to be able to cope with some greater ease or grace. This is my hope. We'll soon see if I can actually attain this lofty state of consciousness.

I have a new updated website. It's still at www.BonnieGintis.com, but it looks a bit different. It doesn't have any new content, it's just constructed from different software that's easier for me to make changes on my own if I add anything to it in the future. It's the easiest way to find this blog, if you want an update about my health or hear some philosophical musings about life, love, Osteopathy, Continuum, food, or whatever else moves me. (Check out the other beautiful websites designed by my divine WebMagician Copperwoman at www.Copperwoman.com)

It's great to be home after the grueling trip from San Diego, where Mike Burruano and I were each bestowed Fellowship in the Osteopathic Cranial Academy. It is quite satisfying to be acknowledged for all my years of service and teaching. All you Osteopathic colleagues, please come to Indianapolis next June, where I will be giving the Sutherland Memorial Lecture, as well as leading "Tours of the Minnow" at the ends of Friday's and Saturday's programs.

I'm working on my lecture, and on one of my several half-written books. This one is entitled, "Unexpected Relationships." Encourage me to finish it, because you might be in it!