Sunday, November 16, 2014

Learning to Live in Limboland

Ten months. Long enough to have a baby. Long enough to lose several friends to cancer. Not long enough to figure out if I have a recurrence. Ten months ago I complained to my radiation oncologist about severe pain I've been having in the same quadrant of my body where a team of crack scientists poisoned, cut and burned the cancer in me two years ago. An MRI was ordered, but due to the shortage of MR machines in the province the scan was not until six weeks later. In the interim other odd symptoms started popping up.


A raw feeling in my lungs. A persistent, but wee, cough. A lymphedematous arm that suddenly ballooned up in a matter of hours despite diligent therapy. Numbness coming and going in my fingers, eventually moving to my arm, then both arms.

As luck would have it, when the results of the MRI came in they were not good. But not in a way I would have imagined. Even if I hadn't convinced myself that all of my symptoms were completely unrelated and minor, I still would have been thrown for a loop when the MRI showed malignant activity in the opposite breast.

A few days later I was back at the hospital for a mammogram, ultrasound and biopsy. Except that nothing showed up on the ultrasound. (Never mind the mammogram, my mammograms look like a miserable cloudy day. Even when I had a mammoth tumour in my breast, my mammograms were "normal". So a normal mammogram for me is pretty meaningless.) The radiologists retreated into their little radiologist room to decide what to do next. The recommendation: wait six months and repeat the MRI.

In the months since the decision to wait, I've been working with my doctors to look into my other symptoms. A chest x-ray, a CT of the arm, an MRI of the brachial plexus, an MRI of the cervical spine, a pulmonary function test, a nerve conduction test (ouch), and soon a chest CT and an ultrasound of the elbow. Each test is ordered under the guise of "just seeing what's in there" and every report comes back stating the purpose was to "rule out metastasis". I am growing numb to the fear of recurrence.

Last month I went back for my repeat MRI. A repeat of the MRI that (in my mind) started all this. As I sat with the technician, I answered all the usual questions. Yes, I have drug allergies. Yes, I've had MRI contrast several times. No, I've never had a reaction. Yes, I have piercings. No, I am not wearing any jewelry. I've never worked in a machine shop or gotten shrapnel in my eye. My tattoos have always been fine in MR machines. No, I'm not pregnant. When was my last menstrual period? Well.

This is where it ends. You see, chemo made my ovaries very very angry. Get off my lawn grumpy. They seem to love summers, keeping time perfectly when the weather is warm. But in cold weather they go into hibernation. It was late October so, yeah, it had been a while since I had had a period. The technician put everything down and told me I couldn't have the scan.

In a premenopausal woman breast tissue often lights up like a Christmas tree for three quarters of her cycle, making MRIs trickier to read. The ideal time to have a breast MRI is between days 7 and 13 of one's menstrual cycle. Since I was way way past the 13 day mark of my cycle (and way past the 28 day mark as well) there was no guarantee that the scan would be of good quality. The radiologist sent me home.

So now I wait for a period that may not come until the weather gets warm again. Hell, as far as I know I'm waiting for a period that will not come, period. But I wait. Next week I'll be talking with my oncologist about whether he can strong arm Radiology into doing the scan. Somewhere in between my chest CT and elbow ultrasound. A CT and ultrasound that were ordered just to "see what's in there" but whose reports will start with the phrase "rule out metastasis". I guess at this point my fear of recurrence has been (temporarily) replaced with a fear of not finding the cause(s) of all the issues I'm having. A fear of being in limbo forever.

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