The integrated medicine specialist I saw yesterday who told me I’m pretty much doing everything wrong and compromising my chances of living without a occurrence also told me that they were impressed with how calmly and unemotionally I can recite my history from the past three years. I was also told the fact I can be so unemotional about it is not a good thing, and in fact, it comes off as
Here’s the reason people like me wear a mask every day: We’re tired of being hurt. We’re tired of wondering when the next shoe is going to drop. We’re tired of not knowing what to expect. We’re tired of thinking we’re doing the right thing, but as usual, it’s the wrong thing, or it’s the right thing, but it’s not right enough.
Do you honestly think I don’t feel horrible that my diet sucks so much? Do you honestly think I don’t feel like I’ve damned myself? Do you honestly think I don’t feel like I’m ruining my family’s lives because my body betrayed me at thirty seven years old? Do you honestly think I enjoy thinking EVERY SINGLE DAY that EVERY SINGLE ACHE or PAIN or FUNNY FEELING is the cancer? Do you HONESTLY think that?
And, do you honestly think I’m the one in the wrong for wearing a mask to protect myself? For guarding my heart? Do you honestly think A is wrong for it? Honestly? With everything we’ve been through the last several years, life reads like a damned Shakespearean tragedy.
December 2, 2013: Mom diagnosed with colon cancer.
December 26, 2013: Mom hospitalized for a life threatening obstruction and infection resulting in emergency surgery and a two week hospital stay.
January 2014-May 2014: Mom unable to work for months because of complications to colon cancer treatment and surgeries.
June 2014-August 2014: Mom recovers and continues chemo.
September 2014-May 2015: Mom has more surgeries from colon cancer and treatments. Mom has every side effect or complication possible, including resulting in a wound vac.
July 2015: I decided to follow my heart back into teaching. A accepted a new, very challenging position. Both of us excited at the possibilities.
August 2015: Breast cancer. Stage 2A. IDC. HER2+.
September 2015-January 2016: TCHP chemo regimen. Private family emergency occurs. I completely and earn my master’s degree while undergoing chemo.
February 2016: Mastectomy. SURPRISE! The cancer is in your lymph nodes AND it’s ER+. No HER2 cancer left behind.
February 2016: Started Tamoxifen. Continued Herceptin.
March 2016: Worst headache I’ve ever had triggers a brain CT. Began radiation. Still Herceptin’ ing. Brain CT normal -Thank all the things.
April 2016: Finished radiation. Still Herceptin’ ing.
May 2016-June 2016: Recovered from radiation while getting Herceptin every three weeks.
July 2016: DIEP flap reconstruction. Still Herceptin ‘ing.
August 2016: Returned to work less than three weeks after DIEP. Still Herceptin ‘ing.
September 2016: Last Herceptin. 1 year scans. NED.
October 2016: Complications from DIEP reconstruction.
November 2016: Dad starts complaining of headaches. Move into new house.
December 2016: Settle into new house.
January 2016-February 2017: Dad complains of headaches.
March 2017: Dad has a seizure. I have an oophorectomy on A’s birthday.
April 2017-June 2017 Dad’s health deteriorates. He has a brain tumor. Looks benign. Still has seizures.
July 2017: Roadtrip for me and the kids. A accepts a new position and changes jobs.
August 2017: Dad has brain surgery resulting in loss of function on left side and begins intensive rehab.
September 2017: 2 year scans. NED. Dad moved to skilled nursing.
October 2017: Dad moved home with in house therapy. Requires 24/7 care.
November 2017: Headaches for me scaring me to death. A develops bronchitis. No improvement in Dad.
In this same stretch of time, A’s uncle died, his mom had surgery, his dad lost his job and found a new one, his brother broke up with his fiancee, his sister graduated from college, his grandparents have had health scares, particularly his 90 year old grandfather who lives over a thousand miles away from us.
It does not remotely touch family stress, daily stress, or anything specific to jobs. This does not remotely touch the stress of living with someone who’s had cancer. Caretakers endure enormous stress. If you think for one minute my cancer and fears don’t touch A, you’re wrong. He’s like me -stoic. What else can we be? We have two young children. Cancer yanked our best laid plans for our lives out from under us. And, because he guards his heart as zealously as I guard mine, we’re wrong.
When I was little, around 10 years old, a family member, in anger, told me something I’ve never forgotten or forgiven myself for: I don’t know when to shut up and because I don’t, I make things so much worse for everyone around me. Imagine how it feels now because I’ve had cancer. Imagine the guilt I feel every…single…day.
I cry every single day. EVERY day. I cry because I’m scared these headaches mean brain mets. I cry because I blame myself anytime A has a bad day. I cry because I fear what will happen to my children if they watch me die from cancer. I cry because I had cancer.
It is what it is.
I don’t know how to be any different than who I am. I don’t ask A to be any different than he is. Cancer changed us. I’m sorry my cancer changed me and changed him. But, it did. I can’t fix it. I can’t fix cancer. I. Can’t. Fix. It.
I’ve spent the last four years constantly trying to put out fires that just get bigger, get worse, get scarier, and I’ve done it all with the facade of “This is fine. Everything is fine.”
Last night, a friend sent me this picture message:
My track record is 100%. Yesterday sucked. There’s no kinder, nicer, cleaner way of saying it. It just sucked. Today, honestly, isn’t that great either because I have a nagging heaviness in my head around my left temple, and it’s scaring me. I didn’t wake up with it, I’m not nauseous or dizzy or seeing spots. It’s not progressive. It’s none of the things I’ve Googled when I Google “what do breast cancer brain mets feel like?” Here’s the rub: I have to Google that because…I had a cancer. I had cancer. At thirty seven. I. Had. Cancer. And, as I was told yesterday, if I don’t start eating better and exercising and losing weight and ALL the things I’ve been told since I was diagnosed, I’m upping my risk of dying from breast cancer.
You wonder why I wear a mask? Why I guard my heart? Why A is stoic?
Cancer is why.