The more you know

Before I got cancer, I didn’t know much about cancer.  I was in a state of blissful ignorance.  None of my close friends or family members have ever had cancer and because of this, most of my images and ideas about cancer have come from TV or filtered through people who knew people with cancer.  TV was really the big winner in shaping my cancer ideas, though.

The first thing that was completely different from my TV-formed cancer knowledge was how I was diagnosed.

Getting the diagnosis didn’t happen in one emotional moment.  It took days as we awaited results from my biopsy, and even when I got the call from  my primary care doctor, I didn’t know how far advanced it was.   All I knew was that the large tumor in my breast was indeed cancer and that it was aggressive (I remember my primary care doctor using the term “wild one” to describe it).  When she told me I had cancer, I was already pretty sure I had it, so there were no breakdowns and sobbing fits.  No tears.  Just rational talk about next steps.

Of course, when I called my peeps to tell them the news, the tears came.

After I got diagnosed, I met with an oncology team that laid out a treatment plan.  I chose Mass General Hospital for my care and on my first visit with my beautiful and brilliant oncologist, I got the lowdown: 12 weeks of chemo followed by a month off; a mastectomy with removal of axillary lymph nodes followed by another month off; 16 weeks of chemo; aaaaaaand, to top it off, 30 treatments of radiation.

Since, as I mentioned earlier, I knew nothing about cancer and cancer treatments, I figured this was the norm.  And since I knew nothing about what any of these procedures entailed, I wasn’t scared.

Once I had a treatment plan in place, I started doing my own research about what this all meant.  That’s when I started getting the “Oh shit” feeling that creeps up when I read too much or am having a sad day.  The more I learned about cancer, the scarier it got.

When my oncologist laid out the treatment plan, it seemed so simple.  I thought, “Yep, just take a bunch of drugs, get a breast removed, a little radiation, and I’ll be good to go!”  But it turns out that all these steps can have major side effects; some are temporary, some last for years, and some  are permanent.  And there’s no guarantee the cancer will be eradicated.

“Chemo brain” and its accompanying forgetfulness and concentration difficulties can turn into lifelong cognitive damage.  Just last week I got my first tingle of neuropathy in my fingers.  This means that the toxic chemotherapy is damaging my nerves, and as the weeks go on, it will probably get worse.  If it gets bad enough, the doctor will have to alter the chemo course by lowering the dosage or taking a week off.

Since my mastectomy includes major lymph node removal, I’ll always be at risk for lymphedema, a chronic swelling of the arm or breast area.   That just plain sucks.

And then there’s the cancer itself.  I had a ton of scans at MGH to see if the cancer had metastasized, or invaded other parts of my body.  According to the scans, it hasn’t.  When I found out that news, I was over the moon.  Ecstatic.  But then I learned that cancer cells can be quite crafty, lurking in other parts of the body undetectable by our diagnostic methods which means that even though I have Stage IIIA breast cancer, there could be cancer elsewhere and it just wasn’t developed enough to be seen.

I guess the biggest thing I’ve learned is cancer is kind of a crapshoot.  I can take the best care of my body possible and treat it with the best treatments available, but the cancer could pop up somewhere else down the road.

Most days I’m OK with dealing with so much uncertainty.  But there are days when I get caught up in a vortex of fear about the future.  How much will my surgery hurt?  How bad will the second round of chemo be?  Will I be fatigued to the point of not being able to enjoy life?  And the biggest uncertainty that makes me the saddest: how long will I get to live and enjoy my babies?

Lately, I’ve been reluctant to read much of anything about cancer, be it books or blogs.  I am a firm believer in self-advocacy and knowing all about options, but at a certain point, the more I know, the worse I feel. Luckily, knowing my limits has led to many good days that look a lot like this (an image you don’t often see on TV cancer dramas):