Fear and Gratitude

grant-at-window-with-frameSome days you just want to step away from your life and say, “Enough.” Today was another visit with my oncologist, and it was one of those days.

It seems that the plans for treatment and surgeries have grown more complicated as the weeks have passed. As of today, there’s chemo, bilateral mastectomy, hysterectomy, Tamoxifen (for possibly 10 years), and scans every 6-12 months. And that’s only to treat and monitor the cancer.

When asked about the possibility that I have Cowden Syndrome, the oncologist first nodded but then began discussing alleles and said that I would definitely have to consult with a genetics counselor about further investigation into the PTEN mutation after my cancer treatment is over.

What I understood from that discussion was that he felt I had Cowden Syndrome, but he couldn’t officially diagnose me with that disease. That diagnosis would have to come from someone else. His bailiwick is cancer and only cancer.

Sometimes the fear just gets to be too much. How will all of this affect me? My marriage? My family? My ability to work?

And that overwhelming fear is still mixed with gratitude because I know in many ways I’m darned lucky. I realize that, but often my heart doesn’t. But for now I have anti-anxiety meds that help me get through each day and the various medical surprises.

Tomorrow’s chemo day. Honestly, I’m grateful for it in a weird way. Having inflammatory breast cancer, I can see how the treatment is working to shrink the lesions. Do I look forward to the pain? Heck no. But it’s nice to have that reassurance that the treatment is working as it should.

Obviously, my life and emotions are kind of a mess right now. I’m 43, unemployed, being treated for cancer, and possibly have a rare genetic disorder. I go from overwhelming anxiety one minute to crying the next. All of my “life plans” center around the medical establishment at the moment. But I know that it all could have been much worse.

Fear and gratitude, all in one jumbled mess. One day at a time. Often one minute at a time right now.

 

Being a Two-Timer and Other Things

weird-pic-with-frameIt’s not what you think. Seriously.

I was diagnosed with breast cancer (triple negative invasive ductal carcinoma) in 2004 at the age of 31. At that time, I had a lumpectomy, chemotherapy, and radiation.

When I went in to find out my current biopsy results in July 2016, I expected a recurrence. Instead, the surgeon gave me some unexpected news. This was a totally new cancer: ER+ inflammatory breast cancer. I was stunned.

Not one but two aggressive types of breast cancer?

Sitting at home afterwards, I mindlessly scanned Facebook. Perhaps it was just my state of mind at the time, but it seemed like all the posts were taunting me. Inspirational images told me …

Everything happens for a reason.

Change to (x) diet and cure your cancer!

Karma will always get you.

You attract into your life what you truly desire.

Any illness is your body’s way of telling you what it truly needs!

After 12 years, I had truly expected to be free of this. But here cancer was again, confronting me with its ugly old self. I logged out of Facebook with its happy platitudes.

Too, there were well-meaning folks who gave me advice on what I should do, only serving instead to reinforce the ideas from the platitudes, that cancer had returned to my life because of something I had done or failed to do.

The concept that spiritual practices, thought processes, diet, or exercise could solely be the cause of cancer doesn’t incorporate the growing knowledge of the role of genetic mutation in its formation. And for those of us without the commonly known BRCA issue, it can be doubly difficult to make others understand. But there are other mutations–like that with which I was recently diagnosed, PTEN Hamartoma Tumor Syndrome–that can play a role in cancer.

And the oncologist is certain this is the cause of my current breast cancer.

Does that mean that I won’t look at spiritual, diet, or exercise in my recovery? Certainly not. But it does mean that I no longer feel culpable in my illness.

There is one thing, though, that remains. My particular mutation puts me at high risk for other cancers as well, along with some other nasty symptoms. As with anyone else, the future remains uncertain, but with the results of my genetic test, I face a new lens through which I can see possible medical outcomes in the years to come.

One day at a time right now.


Oh, in case you’re wondering, the above is the very first selfie I’ve ever taken. I know it’s weird, but that’s more to reflect my feelings than give you a full picture. Plus, the chemo is doing havoc on my skin. So there. Take it or leave it, but this is me right now.

Waiting and Dealing with Cancer

katniss-in-box

It seems like much of dealing with cancer is waiting.

Waiting for biopsy results…

Waiting for doctor visits…

Waiting for scans…

Waiting for insurance to approve treatment…

Waiting for treatment to begin…

Waiting for surgery…

You get the idea. For me, the waiting is the hardest part. I do much better when there’s action that I can take, whether going to treatment or preparing for the next step.

My current chemo regimen involves treatment every three weeks. When I began treatment, I expected lots of reading, writing, and research to take place during my “good” weeks. Well, I admit that hasn’t happened. Generally I’ve sunk into endless movies and sleep.

Admittedly, part of this may be the fatigue brought on by the chemo as well as hormonal changes. But I can’t say that’s all of it. Dealing with cancer one time is quite something. But twice? And now I have the results of my genetic test as well. Yes, I’ve been depressed and occasionally throwing myself the proverbial pity party.

So stay with me folks. You’re going to see some pretty honest posts from here on out. I’ll be writing more and sharing about my cancer and everything else.

And as for me good weeks? Well, I promise to do more than just watch bad movies. That’s a public promise, and I’m sticking to it.

 

 

 

 

Down the Rabbit Hole

tommy-with-textIt’s not every day you find out you have a rare genetic disorder.

Granted, I had already had one genetic test in 2004 after my first diagnosis of breast cancer, but at that time the tests were limited to BRCA. Considering the strong history of cancer in my family, I had expected a positive result. The BRCA test was negative, and my cancer treatment continued on as expected.

Fast forward to July 2016, all timey wimey like.

A punch biopsy revealed that the lesions on my breast were inflammatory breast cancer.

Seriously? Again?

I began chemo as there were indications that the cancer had already spread to my lymphatic system. Meanwhile, the surgeon and oncologist urged me to consider another genetic test.

“I’ve already done that,” I said. “It was negative.”

They talked about the advances that had been made in the tests, and I began to feel numb. That sort of numbness that drowns out all of the medical jargon and recommendations, just leaving you with a steady, unending thought of “Why?” That drawing into oneself, wanting to escape into the before time, that time of remission and work and normalcy and fun.

I signed the papers and let them draw the blood, expecting another negative result. That was not going to be the case this time.

Sitting in the oncologist’s office after my first chemo treatment, I listened as he went over the results of the genetics test. A “clinically significant mutation,” leaving me with extraordinary risks for a variety of cancers. The numbness returned as he showed me the abnormally high numbers and began to discuss surgery recommendations and my future life full of scans and tests and whatnot. I just sat there, not knowing any more to say.

It was only later, after a week or so of sleep and worry and reading that the numbness began to fade. I looked at the paperwork again and began to do what I do best: research.

Under the large red banner on the first page of the results, below the words “High Cancer Risk,” I found my own entrance to the rabbit hole. The genetic test results showed that I had PTEN Hamartoma Tumor Syndrome. Reading the symptoms and diagnostic criteria for this disorder, I realized that this one blood test had given me the key to understanding my whole strange medical history. And this syndrome was most definitely why the cancer kept returning.

I’m still fighting the numbness, urging myself toward accepting this new normal. Weirdness perhaps can become commonplace eventually.