"Some women are lost in the fire. Some women are built from it."
—Michelle K.
The Fire Within Blog
Give Me Liberty or Give Me Death

After enjoying one of my few and far between happy days several weeks ago, my world imploded. In short order, two big quakes rocked Los Angeles causing me deep upset and I suffered my second concussion in the pool retriggering last year’s symptoms. Then unbelievably, I was faced with a life and death decision.

About six months ago I felt a lump in my breast. I didn’t have it checked because I’m prone to cysts and get annual mammograms. Furthermore, I stay away from western doctors like the plague because they generally hurt me. In fact they’ve told me three times that I was going to die from cancer without their many treatments. I refused all, and they were wrong.

But when my new internist alerted me to the fact that I’d missed my last mammogram (somehow their three reminder letters didn’t appear in my mailbox), I got concerned and had the lump checked. I mean, I knew it was a cyst, but why was it getting bigger?

You’ve probably already guessed that I was wrong. Dead wrong. With subtle apprehension, my radiologist shared that I have an irregular shaped mass that is most likely a rapidly growing malignancy. Insert scream here.

After Dr. Wang recommended a biopsy of the mass and swollen lymph node as my next step, she was stunned by my hesitancy to follow through due to my fear of spreading CRPS. You see, what was lost on Dr. Wang – and most people – is that there are fates worse than death.

Decades ago, it was a procedure (ultimately unnecessary), that spread CRPS to my cervix, robbing me of my chance to have a baby. And it was a procedure (again unnecessary) that broke my contracted right arm, a fracture that went undiagnosed for a year. During that constant level 10 pain period, a doctor convinced me that lupus was the culprit and put me on an infusion drug that almost killed me after just two rounds.

After the ultrasound last week, I had pain in my right arm so severe that my heavenly lap swimming became hell. That’s when my situation really hit home. If I follow through with anymore cancer diagnostics and/or treatment, I’m terrified that my CRPS will worsen and likely spread. And with that I’ll lose my hard-fought quality of life, what little I have. Yes, the doctors might save my life, but would I have a life worth living?

I don’t have a good choice here. I’m seeing a surgeon today to discuss how invasive their proposed biopsy would be and if I can move forward safely with CRPS. If so, the biopsy should confirm that I have cancer, how aggressive it is and best treatments.

While I wrestle with this surreal conundrum, I find myself in unfamiliar, even ironic territory. After decades of having my many invisible illnesses doubted (just this morning I spoke with a man who was certain fibromyalgia was concocted by hysterical women), everyone who hears my news is heartbroken. They offer their prayers and visits, no questions asked. One fellow swimmer gasped “this is every woman’s worst nightmare.” A colleague on the east coast even offered to do breast cancer therapy research.

This new found embrace feels good, and not so good. In fact, one comment meant to comfort actually hurt. A friend emailed, “Cynthia, you have so many people who love and support you.” Sadly, due to the ravages of pain, I can count on one hand how many people have come by to help over the years.

An unfortunate twist has emerged. For about 25 years of illness, I hoped and prayed that I would get cancer to at last end my suffering. But I recently put some solid closure on the loss of those who abandoned me and have now accepted that I’ll never have what I need to be happy, all leading to a more peaceful and productive life. Just when I reached that clearing, now that I want to live, cancer is knocking at my door. So sad.

My probable cancer is pre-occupying my mind, so much back and forth. What is right for me? I feel like I’m about to fall off the earth into black. Even so, I recently came to a landing of refusing all treatment. I don’t know that my body could survive another asteroid hit. That, and I don’t think I have a quality of life that’s worth fighting cancer for.

Then last night, my 39-year partner and most wonderful human being on earth softly said that he wants me to live as long as I can. Tears well.

Truth be told, I don’t know what I’m going to do. I want to live, but I won’t make a choice out of desperation, like all of those before that sent me down the path of trauma and regret.

I will live or die on my own terms.