I’m struggling with insomnia again. It’s maddening. I sleep well for a few nights, but the insomnia returns. It’s hit me hard over the last few nights. My Fitbit tells me that for the previous three nights, I’ve woken up at least twice a night and been restless between 8-15 times.
I stopped taking the sleep aid. It wasn’t helping me stay asleep, which is my problem, too. If I can fall asleep, I don’t stay asleep. It’s maddening. The last time I told this to Dr. O she increased my dosage on the sleep aid. I took the increased dosage once and swore never again the next day. I didn’t sleep well, had crazy dreams, and woke up groggy. No thanks.
Speaking of Dr. O, I see her again in January, at the end of January to be precise (literally…I see her on the 31st of January). It’ll be my first 20 week check up with her. I’m pretty ambivalent about it right now. I know I’m not doing what I’m supposed to do…lose more weight, cut out sweets and soda, exercise more, rest. And, I feel guilty about it, but at the same time, I’m doing what I can. It’s just not enough to my mind. I have cut down on sweets. I might drink a Dr. Pepper a day. I do try to walk more. Today’s just been one of those days…we have an overrun of sweets (because I’ve baked…a lot), and I’ve grabbed Dr. Peppers when I should have grabbed water or unsweetened tea. I feel guilty. ¯\_(ツ)_/¯
Today, I still understand death can and does strike at anytime, anywhere, anyone. 2016 struck again today. This year has been relentless in its surprises. I thought 2015 was bad, but then came 2016.
I have a few days left on my vacation. I’m going to try to rest, relax…enjoy.
I spend too much time existing. Too much time blaming myself for things beyond my control. Too much time feeling guilty. Too much time being sad.
I spend too much time bemoaning what I’ve lost…my breasts, my sense of immortality.
I spend too much time being discontent. Unhappy.
I lost a childhood idol today. I played Princess Leia all the time as a kid. I had everything Star Wars a kid in the 80s could have (except an AT-AT…my mom drew the line there). I had all the ships, all the characters, including the ones you had to send in cereal box tops to get. I had all the different C3POs, Lukes, and Leias (and everyone else). Princess Leia was different. She was badass, even as a little girl in the 80s, I recognized badass, different from the rest of the female characters. She stood up for herself, her people, her friends, her family. She laughed in the face of doom, asked for help when she needed it, defended because it was the right thing to do.
I wanted to be Princess Leia.
I lost a childhood idol to a heart attack (or, as some places have said, a cardiac episode). I lost a childhood idol out of the blue, as 2016 has been likely to do…surprise!
Death comes for us all. It’ll come for me, whether it be from breast cancer or something totally unexpected, it’ll come. And, I won’t like it.
I’ll like it less if I’m just existing.
I’ve done some things that make me happy over the last week, thing that make me live instead of exist. I’ve cooked more. I like to cook and bake. My goal for last week was, before Christmas Eve, to try, again, to make my grandmother’s apricot pies (I did…they turned out…my dad claims they still need work 😂), and at the request of my mom, to make her the cake her mother used to make for her.
My mom has many talents, but cooking isn’t one of them. She could make some mean sandwiches for us, but cooking with actual pots, pans, ingredients, and utensils, not so much. My dad was the family cook. As for me, I’m self-taught. I can follow recipes well. Most of what I make turns out well, so I figured I could follow the recipe for my grandmother’s orange slice cake…if I could find it. My mom had it…in a cookbook, which she revealed to me during a text conversation.
So, instead of making it on my own, I roped S into making it. She’s been asking me to teach her to bake, and this seemed like a good recipe to let her try. She’s helped me make cookies for years, so, she made it, under my guidance, and it turned out well, too. Spending time baking with S (and AJ when he slows down enough) makes me happy.
My cancer counselor asked me to close my eyes and answer this question with the first thing that came to mind: “Besides spending time with your family, friends, and job, what’s something you enjoy spending time doing?” My answer: Baking.
Lame, but true.
She told me when I bake or cook to tell myself it’s ok to be happy, it’s okay to enjoy…because I need to remind myself it’s okay to be happy, to enjoy life
Lame, but true.
All of last week, I baked with S. I cooked for my family, and I enjoyed it. I was content.
We host A’s family every Christmas Eve for the Feast of the Seven Fishes. We eat, we talk, we laugh, we open gifts, we spend time enjoying each other’s company. On Christmas Day, we spend the day with my family. We eat, we talk, we laugh, we open gifts, my nephew, my oldest cousin, and I usually get into trouble during dinner for laughing at something my aunt said. Usually, I feel pressured to either be a good hostess (which I’m not) or to act like I’m fine. I didn’t feel any of that this year. I just enjoyed being with my family, all my family.
Last year, I sat on the floor of our bathroom and sobbed, scared and convinced last year was my last Christmas Eve, Christmas, New Year’s.
This year, I had those same thoughts, but not as acutely. This year, I laughed more, I took pleasure in watching other people open the gifts we’d gotten for them. Last year, A did all our Christmas shopping. I was too tired and too run down from chemo to do it. I’d tried, but the one time I went out, I came home with an arm covered in bruises from carrying bags. After that, A made me stay home. This year, I chose our gifts carefully, more carefully than I usually do, which sounds terrible, but I really wanted to get people things I knew they would really like instead of getting something convenient that they’d probably like.
I want to live a long life, to grow old with A, to see S and AJ grow up and make their marks on this world. I want to live, but as 2016 has taught us, over and over, in shocking detail, death comes for us all, when we expect it, when we don’t expect it. I could relapse, I could be NED for twenty years. I hope it’s the latter. No matter what, though, death will come. I can bemoan it, be bitter about it, be unhappy and discontent. I can exist. Or, I can do as my childhood idol did, look destruction in the eye and laugh. To live.
Living with cancer isn’t badass, but living life on my terms IS badass. Living for my children, for my husband, for my family IS badass. Resisting is badass.
Existing is giving in, giving up, and as scared as I am, I don’t give up easily. So, as 2016 ends (without anymore surprises, please…someone wrap Betty White in bubble wrap from neck to toes and put a helmet on her head), I’m making an early New Year’s Resolution…nothing drastic, nothing dramatic, just a commitment to keep my gratitude journal going. One thing I’m grateful for everyday. One thing to remind me I’m alive, I’m not just existing.
One thing to reinforce that it’s okay to be happy, even in the darkest of times. Thank you JK Rowling.
And, thank you, George Lucas and Carrie Fisher. Thank you for Princess Leia, for showing a little girl a badass heroine, a strong, female character, a heroine I now share with my daughter. S wears a shirt, often, with an imprint of Princess Leia and the quote “Girls run the galaxy.” I want to be alive to see what S, and AJ, do in this galaxy. Alive, not existing…if I’m so lucky. And, if I’m not that lucky, I want to leave them memories of me choosing happiness over bitterness. I haven’t been an example of that over the last several months. They deserve better from me. I want to be like Princess Leia and laugh in the face of doom, ask for help when needed, defend because it’s the right thing to do. So, that’s my commitment: be better. Be me, but be a better me. Be grateful. Find joy.
This morning, a friend sent me a Facebook message of my own words, words I’d written to her five years ago as she grappled with a life changing diagnosis for her very young son. She said she didn’t know why, but this morning, she’d been compelled to send them to me.
It was a message of encouragement for a very stressed out mother trying to figure out life with young twins and a young son with an autoimmune disease. It was a message of compassion for a woman trying to do it all.
She said she knows I’m working through some stuff. Maybe that’s why she was compelled to send it to me.
I found a hard lump in my left reconstructed breast last night.
I called Dr. H first thing this morning and by 8:45 am, I had an appointment with her for an ultrasound as soon as I could slip away and get to her office.
The ultrasound at her office led to an immediate appointment at Methodist’s women’s center with a radiologist Dr. H said she trusted, who would be kind, but most of all, would tell me exactly what he saw, and if needed, would send me for other scans.
Scans. I freaking hate that word.
I’ve cried so much today. I wanted Dr. H to go, “Oh, that? That’s nothing!” when I saw her. Instead, she said, “Hummm…I’m not overly concerned, but I want another set of eyes on this.”
I cried so much.
At the women’s center, while I waited, I wiped away escaping tears.
I saw the radiologist for an ultrasound. He immediately found the area of concern, stared at it, and said, “Nothing worrisome. These are oil cysts and fat necrosis. The fat in this part of your flap died and is liquefying. It’ll eventually become a hard knot. I see nothing here that looks sinister. No more scans needed.”
I cried so hard.
The radiologist stood beside me, took my hand, and said, “You’ve had a rough year.”
Understatement of the year.
I just nodded.
He told me to take a deep breath and go somewhere to settle myself. He told me to have a merry Christmas. He told me he’d be praying for me.
I sat outside of the women’s center for nearly an hour. It was quiet. No one bothered me. I just sat there, in the sunshine, in the breeze.
This part of my life sucks. Cancer sucks. It never really leaves you, or if it does, I’m not there yet.
Dr. H called me after the radiologist sent her his report. She told me to sleep, to rest, tonight. But, here I am. Wide awake. Too late to take a sleep aid. Too keyed up to rest.
In a press conference today, Mitch McConnell discussed how Republicans plan to repeal the ACA, and it was clear in the press conference, the plan is to repeal, not replace. Not now.
Repeal. No replacement.
20 million Americans.
I’ve been told to get a job, to pay for my own insurance, to stop living off the government.
These people refuse to understand I have a job, I pay for my own insurance, and I’ve never lived off the government. I rely on the ACA to protect me from predatory insurance practices. I rely on the ACA so that my insurance company does not drop me from coverage because I had breast cancer. I rely on the ACA so that my insurance company cannot enforce annual and lifetime maximums. I rely on the ACA so that my insurance covers the medication I need to (hopefully) keep my cancer at bay.
The press conference made it clear I will lose those protections from the insurance practices…from annual and lifetime maximums and not having to worry about the insurance company kicking me off my policy because I developed cancer.
How nice it must be to live in a world where no one gets sick. How nice it must be to feel that kind of superiority.
I was once that arrogant…thought I’d never need my health insurance, but I paid for it every month just in case.
2015. Just in case happened.
Some have insinuated to me that it’s my fault, which I guess is why those same people see my life as less, as dispensable.
When illness comes knocking on your door, I hope you never find out how it feels when someone blames you for your illness. You did something wrong. You weren’t good enough. This was in the plan for your life. Something good will come of it. Have faith. Just believe.
The ACA helped save my life.
You voted for a man and a party that see people like me as less, as other, as dispensable.
You voted against my life.
Don’t tell me to get over it. Don’t tell me not to worry about it. Don’t tell me this won’t happen.
I did something I rarely do: I called my senators’ offices this afternoon and talked to an aide in their offices. I told them my story. I doubt very seriously it’ll matter, but I cannot stay silent anymore. These men, Senator Cornyn and Senator Cruz, are my elected senators. I may not have voted for them, but they represent me nonetheless. So, someone in their offices can listen to my story. They may forget, it may go nowhere, but at least I tried.
I just wish my voice mattered, that my experiences mattered.
The San Antonio Breast Cancer Symposium (#sabcs16) is going on right now. It’s a huge and significant conference for those who specialize in breast cancer or have been touched by breast cancer. Results from clinical trials are presented, and breast cancer doctors, researchers, hospitals, etc. attend from all over the world. My oncologist, Dr. O, attends every year and is a regular presenter. This year, Baylor Dallas presented its findings of the cold cap clinical trial I could have been in but declined.
As I followed the hashtag on Twitter today, a picture from a presentation popped up showing the cost breakdown of some fundamental breast cancer treatments.
I was on pertuzumab (perjeta) and trastuzumab (herceptin). Look at the cost. This is not okay, and without the ACA, my insurance company could have not only declined coverage but dropped me simply because of breast cancer. This is NOT okay.
If my cancer comes back and is HER2+ again, T-DM1 is my best hope, to the best of my knowledge. To be honest, I try not to research my options if I go Stage 4. I can’t handle that thought. Look at the cost of it, though. This is NOT okay.
For you who advocate against the ACA, and truly believe in the “repeal and replace” mantra, DEMAND your representative support something that is more than HSAs and insurance across state lines. There MUST be protections against predatory insurance practices, and there must be something done to bridge the access gap. Do NOT be as arrogant as I once was to believe breast cancer wouldn’t happen to me. It did. I became the 1 in 8 at 37.
Another piece presented at SABCS16 reported about the sobering data showing diagnosis prior to 40 increase the likelihood of reoccurrence. Still another reported there has been an increase in brain mets for early stage diagnosis that later go Stage 4. This is NOT ok. We need more research for Stage 4 and more treatment options for all breast cancers. We need the people at SABCS. We need the ability to access and afford the remarkable discoveries they make.
Healthcare and access should not be a privilege. DEMAND it be as it should be-a right for all of us. After all, one of the unalienable rights promised by the Declaration of Independence is that of life. Life, liberty, and the pursuit of happiness. DEMAND access to healthcare as a right, not a privilege.
Today, I am grateful for the SABCS, for Dr. O, and for the researchers who discovered herceptin and perjeta. I’d be dead right now were it not for them.
Today has been a fairly decent day. Work went well, A had a great meeting with his boss for his mid year review, the kids had a decent day (AJ got in trouble for talking, but considering the vast improvement in his behavior, I’m ok with it. I got in trouble for talking, too. It’s not the end of the world.). Tonight, I treated myself and the kids to cake balls from Amazeballz (so, so good, and no, I’m not being compensated in anyway for saying this).
Today, I’m grateful for…
1. Resisting the temptation of drinking a Dr. Pepper at lunch. I drank a large bottle of water instead.
2. Coffee. I have a Keurig in my classroom. I use coffee as my sofa replacement. Even using a little cream, it’s still better than soda.
3. My black cat’s obsession with bubble bath bubbles. He swats at them, gets it all over his paws, shakes his paws, and usually ends up with bubbles all over his face.
It’s been a long…long day. I’ve been home about an hour (it’s 10:00 pm).
I want to keep my promise to myself and the cancer counselor to keep a gratitude journal everyday for a month. So. Here’s what I’m grateful for today:
1. I ran into a former assistant principal I once worked with, who’s now a principal, tonight at a HS basketball game (my school’s team played her school’s team). We talked for awhile about the school she’s principal of, and her love and passion for her school shined. It was a great way to end a very long workday. I really enjoyed catching up with her.
2. I was late to work this morning. The morning was just chaotic. I fell back asleep after my alarm went off. AJ lost a form he had to have in order to ride the bus, and I had to frantically fill out another one, and of course, as soon as I finished filling out the other one, he found the lost one (it was in his closet because…why not?). My fifteen minute commute took thirty five minutes this morning. I texted a coworker that I was running late and would she unlock my door. When I got to work, my door was unlocked, my lights were on, my door was propped open. All I had to do was flip my computer on. My coworker made a crazy morning way less crazy.
3. I have a job I love. Even on the most stressful days, I know I’m doing what I’m meant to do where I’m meant to be. I’m happy, most of the time, at work. I have awesome coworkers, awesome students, and generally, an awesome time. There are days where I wonder why I’m doing what I do, but inevitably, I come back to the fact that I was born to do what I do. I’m lucky to have found my calling and am able to do what I’m meant to do at a place that lets me teach, try new things, and supports me.
That’s a hard sentence to write. It was easier to write it, though, than the sentence she made me try to say, “I had cancer and am a survivor.”
I couldn’t finish the sentence. I couldn’t say survivor. When asked why I can’t say that word, why I obviously dislike that word, I talked about how it makes me angry when I see people say someone else “lost his/her battle with cancer,” as if there’s fault on that person.
It all unraveled from there. My anger at cancer. My anger at myself. My anger at myself because cancer happened to me. My anger because I blame myself because cancer happened to me.
I have some concrete strategies to work on my thinking, to work on my scumbag brain, to work on the negative spiral I’ve trapped myself in of “what if the cancer comes back and I destroy those I love the most because cancer happened to me and I die of it.”
First, and hardest for me, I have to work on giving myself permission to do things that bring me happiness or calmness, like right now. I’m curled up in bed listening to Christmas music on the radio. I told the kids it’s leftover night for dinner and to have at it. I don’t get to feel guilty about that. They’re fine. They like leftover nights.
I have to give myself permission to accept the fact that research shows it takes your body upwards of a year to heal from cancer treatment, for the fatigue, memory issues, concentration problems to get better. I don’t struggle with concentration, but the memory issues and fatigue kick my tail. I have to accept it’s as much a part of recovery as the physical part of recovery. It’s okay for me to be fatigued. It’s not okay for people to be upset with me for being fatigued or to say I should be over this.
The other thing the counselor asked me to start is a gratitude journal. I’m to list three things I’m grateful for each day. I can’t repeat anything on my list. The goal is to eventually get to where it’s hard to make the list and force me to dig deep.
Nothing was earth shattering or something I don’t necessarily know. The thing is, though, there’s a disconnect for me right now between my head and my heart. These strategies are supposed to help me bridge that disconnect so I can find my happy again…to consistently find my happy again and to stop living on the cancer merry-go-round I’m caught on. So…I’m going to try, really try, to give myself permission to be happy, to shift my thinking. At this point, I have more to gain than lose.
I’m wide awake…partially because I had five cups of coffee throughout the day, because I took a three hour nap, and because I kind of just don’t want to sleep (convoluted and poorly written sentence, yet it conveys my thoughts perfectly right now).
This evening, A and I talked about what happened this week, him calling me an issue, me being mad at him, work stuff for both of us, stuff with the kids. He talked about his utter lack of patience lately when he gets home from work. I talked about how hard it is for me to figure out this phase of breast cancer.
There have been so many stories about breast cancer pop in my Facebook news feed this week of young women, women in their thirties, dying from stage 4, metastatic breast cancer. Those stories are my worst fear, the cancer returning, the inevitably of dying, the pain. I can’t stop myself from reading the stories when someone shares them. I know, I know, I need to scroll by, but I can’t. So, I read. Then, I spend the rest of the day, or night, or both, anxious and upset. I’m triggered (I feel like I’m incorrectly coopting that word, but…).
Last night, I went back and reread some articles discussing how upwards of 80% of breast cancer patients expierence some symptoms of PTSD, but the symptoms lessen over time (unless, of course, the cancer returns). I know I’m expierencing some symptoms of it. A friend of mine who is a combat veteran talked to me last week. He told me he didn’t want to overstep his bounds, but he also couldn’t be silent anymore to me, and he asked me if anyone besides Dr. H had talked to me about seeing a counselor. He told me that he saw a counselor for awhile after retiring and there’s nothing wrong with needing to talk to someone. He’s right. I know he’s right. So. I put a call in to the cancer counselor Dr. H recommended. I left a voicemail. I’ll probably hear back on Monday. I told A that I’d finally called. He seemed relieved and concerned at the same time.
I know research says 30% of early breast cancer diagnosis have the cancer return at some point. It’s so hard living with this blade hanging over me. That’s what it feels like. I’m afraid of being judged for how hard it is for me to see beyond breast cancer. I’ve lost quite a few friends over the last little bit…some of it because of my political views (sorry not sorry) and some because they just don’t want to be around me anymore. I get it. It’s hard being friends with me on my best day.
I want to be better, be different, live fearlessly. Live. That’s what I want. I want to live, yet I’m not. I’m existing. I’m in survival mode, or that’s how it feels. I don’t know how to shift from survival mode to life. That’s my struggle. I don’t know how to live.