Friday, September 30, 2016

Three Years (and Five Months)

It’s been three years since I was diagnosed with breast cancer. And so much has changed.
Actually it’s been three years and five months since my diagnosis on May 30, 2013 but it has taken me a solid five months to figure out exactly what has changed.

From the moment an individual is diagnosed with cancer, she is considered a cancer survivor. As one very wise 88-year old woman explained to me early in my journey. That said, true survivorship only tends to sink in after the flurry of active treatment has ended. For some people ‘active treatment’ involves surgery, chemotherapy, targeted therapy, immunotherapy, radiation therapy or a combination of any of the above. And, for some people, active treatment never ends.

For those of us fortunate to move into a status of NED (No Evidence of Disease), the thrill of finishing treatment is immediately fraught with fear and consternation: 
  • Now what? 
  • Will my cancer come back? Who is watching for my cancer to come back? 
  • Am I scanned frequently enough? 
  • Am I scanned so frequently I may induce another type of cancer? 
  • Everyone around me is so happy. Why am I so scared?

Every ache, pain, lump becomes a possible recurrence or worse, indication of metastatic disease.

Many survivors tend to live quietly with their anxiety but most all of us experience the same fears.

But three years later?

Three years later a headache is (usually) just a headache and not a possible brain met.

Three years later I don’t remember every monthly ‘cancerversary’.

Three years later I don’t wake up wondering if this is the last day I will be cancer free.

Three years later, I am in a much better mental space.

I am still relying on my safety net made of razor wire (i.e. Tamoxifen). I am still visiting the oncologist every six months to complain about said “safety net” and every now and again I run my own experiment on my drug protocol (this will likely need its own blog post to explain). Three years later, I don’t rely on my ‘rub on nipples’ to make me feel normal. I continue to struggle with the body image issues that most individuals with mastectomies struggle with and yet, in some ways, it feels like mastectomy or not, I am simply struggling with body image issues that most women struggle with – with or without cancer.

This makes me feel more normal.

I have aches and pains. Many of them are related to Tamoxifen but, in recent retrospect, many of them are likely related to getting old. Getting old. At 43, I may not be the conventional old person but I am getting old! And this is a good thing.

I can now imagine turning 50. I don’t feel like I’m jinxing myself when I imagine that in just a few years, my husband and I will launch our children into college.

Three years has been a turning point.

Three years later, I am in a MUCH better mental space.

Except when I am not.

In the last three years I have met literally HUNDREDS of cancer patients, survivors and caregivers. I have internalized their stories, shared their fears, connected them with resources and have hopefully given them some sort of comfort in their time of need. For some individuals, comfort is a hug; for others comfort is connection with others who understand what they are going through. And, for a select few, comfort takes the form of access to cutting edge research papers and clinicians who are willing to form a non-standard plan.

I LOVE what I do. I connect people to people, people to resources and people to knowledge. I teach people how to find their own “outside voice.” I teach people that there is no “right way” to go through cancer. And every time I empower an individual, I feel an equivalent amount of empowerment and want to shout, “Cancer has not won.”

Except sometimes it feels like cancer does win.

Three years in the cancer space has brought me face to face with the abysmal life expectancy and prognosis statistics with metastatic disease. Three years in the cancer space has brought me face to face with the very real challenges of access to care. Three years in the cancer space has highlighted HUGE disparities in research dollars across different types of cancer. Three years in the cancer space has brought me face to face with premature death.  

In the past three years, I have lost count of the people in my physical and virtual communities that have died as a direct result of the disease.

I swore I would never lose count. I SWORE it. But I have. Some weeks are worse than others.

And on those weeks I suffer. 

I question remaining active in the cancer space. I question whether or not I have the mettle to keep up the advocacy, the education, the support and the connection. My ‘err on the side of oversharing’ self, closes up not wanting to burden my own community, sometimes even my own family, with what I now see is simply a reasonable and rational need for support.

Back in May my friend Diane died and I wondered if I had done everything I could do to help her survive. I blogged about how the system failed her. But, in the back of my own mind and in my heart, I wondered if I had actually failed her. If I could have done more. And I have let it eat me up for over five months.

Three years does make a difference, and for the past five months, I have marveled at how, finally, three years post diagnosis I have simultaneously stepped into a better mental space about my own personal health and mortality and yet sometimes stumble into an incredibly deep well of despair about whether or not I can handle what I’ve gotten myself into.

And then I get another email, text or phone call. 

Another stranger-soon-to-be-friend whose hand I can hold either physically or virtually. Someone desperate to feel some semblance of control around and over their disease. Someone looking to connect over fears, hope or science. Someone just like I was three years ago. And I know damn well I can handle it.

Three years later, the landscape is different but the rule is the same: Cancer doesn’t get to win.