breast cancer, life, Uncategorized

Every Morning I Relive My Diagnosis

Either Sunday evenings or Monday mornings, lately, it’s Monday mornings, I fill my pill holder with the pill I need to survive, the pill I need to help my allergies and stop bone pain, the two pills I need to counter my mostly uncontrollable hot flashes, and the pill I take to combat hair loss caused by the pill I need to survive.

Five pills. Every. Single. Day.

I’ve forgotten to take them exactly once. That happened when I switched to arimidex. I had a panic attack in the hospital after my DIEP reconstruction when my plastic surgeon told me I couldn’t take my tamoxifen because of a potential side effect with bleeding. I made my plastic surgeon tell me every single day I was in the hospital why I couldn’t take it. He ended up bringing me literature to read about it. I still called Dr. O, who assured me the few days I would be off tamoxifen were negligible because of its long half-life.

I’m positive if someone told me to stop taking these pills, I would panic. I know it can’t stop the cancer from returning if it’s determined to return, but it’s the best chance I have, along with zometa, which I still haven’t heard if my insurance has approved it, to keep my body an inhospitable place for ER+ cancer to reside.

That and losing fifty pounds. And drinking more water. And exercising.

I have the day off today. My house is quiet. AJ and S are out with A. I chose to stay home because I have a crazy busy week ahead of me. I see Dr. H tomorrow for my six month check up with her. It’s strange, but appointments with her don’t cause my anxiety to rise even though she’s the one who told us exactly what kind of cancer I faced and what my treatments would be. She’s the one who told me my cancer had spread to my lymph nodes.

She’s also the one who came to see me early the morning after preforming my mastectomy because she said she needed to see me. She said she knew I would be heading down the worst case scenario train in my mind and she wanted to talk me through everything she knew at the time. She’s the one who told me that the cancer in my lymph nodes and lymph channels was not necessarily a death sentence.

She’s also the one I call, most of the time, when something isn’t right. A new lump. A strange place on the skin. She sees me almost immediately. She’s the one who sent me for imaging last year when she wasn’t 100% sure a lump in my left foob was fat necrosis and asked the radiologist performing the ultrasound to tell me exactly what he saw because she would not send me home knowing nothing because I was terrified. It was fat necrosis.

She’s the one who Dr. B, my longtime OBGYN, sent me to see after I asked her who she would see. She said Dr. H’s name and said, “MY doctor.”

With Dr. H, I don’t feel like a patient, a statistic. I’m a person with a name and a need, and she knows it. Her whole office staff is that way. I’m sure tomorrow my anxiety will flare, and I’m sure walking into Methodist tomorrow afternoon will be hard because I pass by radiation oncology to get to breast oncology, and as wonderful as the radiology oncology department was to me, radiation is a level of hell I never knew existed.

I relive my diagnosis every single day. If it’s not the pills, it’s the doctor’s appointments. If it’s not the doctor’s appointments, it’s the news and social media. If it’s not the GOP destroying health care in America, it’s something.

Every single day reminds me of what I’ve lost and what I stand to lose, and the hell of it is, there is nothing, really, I can do except take the pills and go to the doctor’s appointments. I could do everything right and the cancer could come back. I could

do everything wrong and live to be 101.

I’m a pawn in the chess game of Fate. Forever in limbo, forever reminded of what cancer has done, can do, and might do. Forever wondering what the next move will be.

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breast cancer, life, Uncategorized

Where Pinktober fails

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I’m constantly, continuously tired. I’ve told all my doctors, and they all agree it’s a combination of several things- insomnia, back to back to back to back to back surgeries (I had five -two major, two minor, one sort of minor- surgeries in a one year span…I’m still not a year out from my last surgery), a solid year of cancer treatments, radiation, and the whole PTSD resulting from diagnosis, treatments, surgeries, and follow ups. Every so often, it catches up to me in a major way.

Yesterday afternoon, I decided to lie down. It was 4 pm, and I figured I could take a quick nap before going to dinner and the football game. I woke up at 6:41…a lot later than I planned because that 6:41 came this morning.

Thanks cancer…

Y’all, it’s Pinktober, and I get it makes people feel good to donate or help out breast cancer awareness, but the thing is…we’re all aware of breast cancer. What we aren’t doing, what we’re failing at with horrific and deadly consequences is finding new treatment options, finding cures -breast cancer is more than one type of cancer, providing support to those living with breast cancer and those living after cancer treatment, and realizing the happy narrative of breast cancer awareness month fails in so many ways.

There is an underlying arrogance of breast cancer awareness, if you’re aware, you won’t get cancer or if you do, it’ll be caught early. Fair enough on early detection, but early detection doesn’t save anyone from Stage 4 -one in three diagnosed at Stages 1-3 go on develop Stage 4. 40,000 will die THIS YEAR from Stage 4 breast cancer, the only kind of breast cancer that kills. That number HAS NOT CHANGED since the birth of Pinktober.

We have to do more than be aware of breast cancer. Awareness is not changing the statistics of survival, particularly for Stage 4. Research is. Clinical trials are. Doctors are. Science is. Advocacy is. METAvisor is. Stand Up to Cancer is. The American Cancer Society is. The National Cancer Institute is. Breast Cancer Research Foundation is.

Most of the time, lately, my anger towards the fact I developed breast cancer at 37 years old is on a slow simmer, but like any simmer, it can become a boil very quickly. Pinktober has my anger on boil 24/7. Breast cancer is more than a month and more than a pink ribbon. Breast cancer is millions of women and men. Breast cancer is 40,000 funerals and memorial services a year. Breast cancer is treatments year-round. Breast cancer is short term planning. Breast cancer is bankruptcy. Breast cancer is a game to politicians. Breast cancer is too many people’s reality.

I slept nearly 11 hours last night not because I was out late or had a hard day or week or because of any fun sort of reason. I slept 11 hours because I had breast cancer.

That’s my reality. That’s my January through December. It’s not just a rah-rah, feel good, pink-all-the-things time. It’s my life.

breast cancer, life

Years

A year ago, I had my port removed. It served its purpose.

A year ago, we started getting ready to move, again, because our dream house was a month from being completed.

My husband’s motto for us is the cliche “You only live once” because the two of us know the fragility of life. It changes in an instant. So, a year ago, we started doing the things we’d been putting off -selling our house, pursuing career options, planning family trips. We are a lot less focused on the intangible.

A little over two years ago, I made the decision to return to the classroom as a teacher. I’ve never looked back, never questioned the decision, and I’m happier for it. This year, A made the decision to find a new job closer to home, scrapping his hour to an hour and a half commute. He found a position which challenges and fulfills him as much as his other job did.

We keep making changes, some big, like career changes, and some little. We’ve lived in the shadow of cancer and reoccurrence for two years now. So far, it’s no easier. Reminders from On This Day catch me off guard. Answering innocent questions about my port scar on my neck make me cringe. Today, AJ asked me about it. He’s forgotten about my port and those surgeries. Those were little surgeries to him. I was home within hours of those.

Oncologists talk about survival rates in years, in appointments in years. As a HER2+ cancer recoverer, I don’t get to go to six months and once a years until I’ve been no evidence of disease for seven years, or that’s Dr. O’s standard. I graduated to twenty week check ups with her, was yanked back to twelve week check up because of Arimidex, and am now to sixteen weeks because of my anxiety at my last appointment. I might return to twenty week check ups, but not until next summer. If I make it to three years with no evidence of disease, I’ll still be on twenty week check ups. Same for four years. At five years, Dr. O said she would go to six month check ups. Same for six years and seven. If I make it through year seven with no evidence of disease, I graduate to one year check ups…for the rest of my life.

Cancer is a never ending marathon.

Maybe one day, my picture quote will ring completely true for me. It’s not right now.

I’m not strong and full of fire.

My passion does burn, though, but not brighter than my fears.

Maybe one year, it will, though.

breast cancer, life

Why I didn’t wear pink today

It’s Pinktober.

I hate Pinktober.

Today was Pink Out for Breast Cancer Awareness day at my school.

I didn’t wear pink. Instead, I wore one of my Stand Up to Cancer t-shirts. It’s orange and white and gray. It’s pretty much the antithesis of the bright pink of breast cancer.

I came thisclose to wearing my black and blue wig. If my wigs weren’t still in storage, I would’ve.

Look, I understand that for many, the Pinktober and all the pink gives them hope, fills them with emotion, and unites them. I get it. I really do.

I’m just not one of them. I hate the sight of the pink ribbon. My 12 year old daughter can’t stand the color pink or the pink ribbon.

It’s painful for me, for us.

It’s a reminder that breast cancer puts my life at risk every single day. It’s a trigger for me, and I don’t say that lightly. My oncologist is pushing through a referral to a Baylor Dallas psychologist who deals solely with those who have been diagnosed with breast cancer because for the two weeks leading up to my 3-month checkup, I became so anxious and scared it truly affected my quality of life. Both Dr. O and Dr. H, who I see next week for my six month check up with her, see symptoms of PTSD in me. I can’t put into words how awful that makes me feel about myself -cancer and severe anxiety? Yet, I’m supposed to revere the pink ribbon and celebrate Pinktober…Are you kidding me?

I live with breast cancer and its aftermath every single day. I consistently return to places that are painful -Sammons and Methodist. I have had literal panic attacks stepping out of the elevator to the 4th floor of the Sammons building. I have sobbed stepping into Dr. H’s office. I guess that makes me weak, the fact I can’t get over the fact I had breast cancer. That I became a pre existing condition. That I became a liability. That I became a statistic.

So, in all sincerity, forgive me for my inability to participate in pink outs, to see good in the pink ribbon, or to celebrate Pinktober.

It’s just too hard.