School lunch lines get a bad rap sometimes, and it’s probably deserved sometimes. Thankfully, I’ve never had a negative experienced with school food. I’ve always enjoyed food from the hot lunch line in my school district. When I was little, Fridays were chili days for my elementary school. I remember my dad giving me two dollars every Friday so I could buy my lunch. Throughout middle school, I often bought my lunch. By high school, I bought it every day.
As a teacher, I still buy my lunch from the hot lunch line. It gets me in the cafeteria where I can talk with, joke with, and laugh with students. It gets me out of my classroom. It gives me the opportunity to thank our cafeteria workers.
In November, my school district serves a Thanksgiving lunch. It’s a small thing, but today was that day, Thanksgiving dinner in the hot lunch line.
(I don’t like gravy…I know. I’m weird.)
Two years ago, this time of the year, I’d just had my third chemo treatment and was in the throes of a horrible reaction to Perjeta. I was miserable. My sense of taste was screwed. It constantly felt like I had brushed my teeth then drank orange juice. It was just an awful, awful time. I was barely eating because everything tasted so bad…but, this Thanksgiving dinner at school actually tasted right. I remember sitting in my classroom crying because something finally tasted normal. I was normal for those few minutes of eating. I was bald. My thigh was covered in red, angry pustules. My skin hurt. My heels were agony. I was exhausted. That school cafeteria meal made all the difference for me that day. For those precious minutes it took me to eat, I didn’t feel as terrible. And, I ate. I ate every bite of it. It was the best thing I’d tasted since starting chemo.
Today I went through the hot lunch line, collected my thanksgiving meal, went back to my classroom, and I smiled at the memory. The meal brought me comfort two years ago at a time when very little brought me comfort.
*This is a raw post. I wrote this on Sept. 28, 2017. I published it for a little bit, but then I deleted it. I’m posting it now because I’m better with what I wrote.*
Two years ago today, I sat at Baylor Dallas Charles A Sammons Cancer Center from 8:00 am until 7:00 pm undergoing my first of six TCHP chemo treatments. I sat in a private infusion room, thanks to a former student, and I graded essays, pretending I didn’t care that poison dripped into my body as long as the poison killed the other poison growing inside me.
I cared. I was scared. I was terrified. I acted like it didn’t matter. I didn’t want special treatment. I wanted to be normal.
Cancer isn’t normal. Nothing about life with cancer or after cancer is normal, and screw that whole happy, cheery “find a new normal!” Chemo and radiation and surgeries and pills and infusions and constant surveillance check ups should not be normalized.
See, that’s where I get angry about our society and breast cancer. Pinktober approaches where suddenly, everything is pink because we need to be aware of breast cancer. I don’t need a reminder to be aware of breast cancer. I’m a freaking walking human advertisement for breast cancer awareness.
I find it hard to believe anyone in the US is unaware of breast cancer. What I find easy to believe is that few know that 40,000 people die of breast cancer every year. Did you know that number hasn’t changed since Pinktober began? What I find easy to believe is that few know Stage 4 breast cancer’s, the only breast cancer you can die from, research is severely underfunded. Did you know Komen designates little of the money it raises to Stage 4 research? What I find easy to believe is that few know there are many subtypes of breast cancer and treatment options for some subtypes are limited. Did you know there are no immune therapies or targeted therapies for triple negative? What good is awareness of breast cancer if we’re not doing more to fund research, find treatments, and provide support to those with breast cancer?
You want me to be happy I had breast cancer? Have several seats. Over the last two years, I’ve been told I had a good cancer, that I got new breasts out of the deal, that I’ll beat it.
No cancer is good, I was perfectly happy with my real breasts, and what if I don’t? Stop placing unrealistic pressures on those with cancer. It happens to anyone through no fault of their own, and that’s why I despise the battle metaphor of cancer. No one loses to cancer. Cancer isn’t defeated because someone fought harder. Cancer doesn’t look at someone and go “Oh damn, maybe I should’ve picked a different body because this person is tough.” Stop it. It sounds ridiculous because it is ridiculous. The battle metaphor is all about making someone without cancer feel good, feel like they’re being encouraging, feel like they’re being supportive. Ok, fair enough, but look at the other side. If you tell your friend or family member they’re going to beat cancer and they don’t, you really want to put the shame of losing on someone who died from cancer? Really? Few things get to me as a person recovering from breast cancer like Pinktober and the battle metaphor.
I still don’t understand why this happened, what lesson I’m supposed to learn, and why I should be grateful this happened. I’m bitter, I’m anxious, and I’m paranoid because my cancer could come back at anytime no matter what I do. I can take all the medicines, do all the exercises, eat all the healthy food, and it can still come back. So, yeah, I’m not more gracious, I’m not more humble (I’m humbled by my friends and family and the sisterhood of longtime friends and my coworkers because they care about me as a person, not just a person recovering from cancer), and I’m not more patient. I’m not a better person.
I’m none of those things the pink myth of Pinktober perpetrates. That is one of my many failings, I suppose. Or, I guess I just didn’t learn my lesson, something I’ve heard on and off my whole life when I’ve gone in a different direction than the one I was supposed to choose.
Funny thing, though, those choices, those different directions led me to A even though, on the surface, we had little in common, yet he, in very real ways, changed me for the better as much as he says I changed him for the better, and that choice led us to S and AJ. Those choices led me to UNT where I earned both my Bachelor of Arts in English and my Master of Education. Those choices led me into teaching. Those choices led me to my current campus where the love, support, friendship, and sense of family is unmatched.
I think today, knowing today is the day I sat for eight hours receiving TCHP for the first time is the second of the three hardest cancerversaries -the day I got the call, the day I started TCHP, and the day I had my mastectomy.
I’m glad, ecstatic to be NED right now. I want to stay NED. But, I also want more treatments, more research, more support. I’m alive because of the research from the American Cancer Society that led to Herceptin. I’m alive because of the research from Genentech that led to Perjeta. I’m alive because of taxotere created from the bark of the yew tree thanks to the research of Pierre Potier, and I’m alive because Michigan State University discovered carboplatin. Almost all components of my treatment plan were discovered in the last fifteen years. I’m incredibly grateful for their discoveries, but we have to do more.
As Pinktober approaches, I implore you to think before you pink. Ask where the money goes.
Cancer is hard. Fighting it, living with it, living after it. No cancer is easy.
I had no intention of writing half of what I’ve written tonight. I was going to just write that today’s the two year anniversary of my first chemo treatment. But, thinking back on this day two years ago, I remember myself sitting in that infusion chair wearing jeans and a maroon shirt with long hair and grading papers. I remember getting up the next morning and going to work, finding get well cards from my classes. I remember the blinding headache I woke up with, the horrid taste in my mouth, and the strange red rash on my chest. I remember acting normal. I didn’t want pity or sympathy. I just wanted to be.
I guess that’s why it’s hard for me to quantify this cancerversary. Without it, I’d be dead. Because of it, I’m a different person.
Yesterday, S had her annual dance recital. She’s been dancing since she was four, and until this year, she’s loved dancing. This year, something changed. It’s not that she hates it. It’s boring, according to her. She says it’s not fun anymore. I hate that for her because she’s a graceful, beautiful dancer. I don’t know if it’s her dance school or if it’s tween angst. Whatever it is, we have to figure it out because I’m not allowing her to quit. It’s a rule in our house -you do a school activity and an after school activity. She does theater and choir at school and dance after school one night a week. She also does art once a week, but for her, that’s not an activity -it’s her passion. She’d no sooner quit art than I’d quit teaching. It’s a dilemma. We’ll figure it out.
It’s the dance recital that brought about a bittersweet, embarrassing, maybe a little horrifying, hair discovery, though. S’s hair, her curly, never been straight in her life hair, had to be in a low bun for recital. It’s not our first dance recital hair and make up rodeo, though. We have a system, or more aptly, I have a plan of attack for her hair -wash it with conditioner, spray it with leave in conditioner, comb it with a wide tooth comb, pull it into a ponytail, grab part of a cut-up sock, roll her hair around the sock, anchor it with bobby pins, spray with hairspray, hope it stays.
It usually does.
I haven’t needed the dance recital hair bag since we moved, and yesterday, about three hours before recital, it dawned on me that I had no clue where I put the bag. I looked in my travel bag. Nope. I looked in the baskets under my sink. Nope. I asked S if she knew where it was. Yeah right…Nope. I went back into my bathroom and pulled the make up train cases from underneath the sink. I opened the first one and came to a screeching stop in my hunt for S’s dance recital hair bag.
I found my own. My baggie. My quart sized freezer bag where, as my hair fell out from chemo and I found it, I quietly stored it. Collected it.
I kept my hair.
Gross. Why would you do that?
I needed to hang onto a bit of me. I needed some control because I had none from the moment cancer became my life.
I remember when my hair first began falling out. Nothing really prepares you for it to happen. The first chunk came out in October 2015 after school as I sat at my desk during tutorials. I absent mindedly brushed my hand through my hair and came away holding a chunk. One of my students saw it, saw me, and made it better by reminding me I could have any color of hair I wanted. I threw that chunk in the trash, convinced, for some asinine reason, I wouldn’t lose all my hair.
It came out in chunks after that, and if I could, I kept it, my hair. I stuffed it into that baggie. Some days, I sobbed over the hair in that bag. I hated my precancer hair. It was thin, unhealthy, fly away, damaged by products, dry. But, it was mine. When the day came when I finally had the courage to ask A to shave it off, he cut what was left off before shaving my head. He put that hair into the baggie, too.
I have no secrets from him, even when I think I do.
Yesterday, that baggie sucker-punched me. It reminded me of the one thing I feared as I underwent chemo -hair loss is one undeniable sign of a cancer patient, and dammit, I didn’t and don’t want to be known as just a cancer patient. I didn’t want the pitying stare we’re guilty of giving cancer patients, I didn’t want to see the relief in people’s eyes that it’s me with cancer and not them (and therefore by the grace of God go you because once upon a time, I did that as well), and I didn’t want the questions.
I wanted to be me. So, I saved part of me.
I zipped up the train case with the baggie still in it, and I slid it back into the cabinet. My fingers lingered on it for a moment. I lingered for a moment. Then, I rose, stared at myself in the mirror. I’m not that woman anymore, the one who squirreled away her hair. I’m harder, bitter. I’m kinder, grateful.
Then, I opened the side drawer of my bathroom counter and found S’s dance recital hair bag, yelled for her to put on a tank top, grab her comb, and get into my bathroom for hair and make up.
I’ve barely moved from my bed since coming home from surgery on Monday. In fact, last night, I fell asleep at 8 pm, woke briefly at 9 am this morning when A told me he and the kids were leaving for the zoo, and woke for the day around 1:30 pm.
Lazy. Sloth. Selfish.
But, hey, I did get out of bed and cook dinner…a garlicky, creamy, bacon pasta carbonara.
Then, I went right back to bed.
The pain is less. The head cold, allergy, respiratory thing I’ve had for a week now is less. My scumbag brain is…well, still a scumbag, but I’m taking great pleasure in telling it to pick-a-four-letter-word off.
Dr. He called yesterday afternoon to check on me and to give me the pathology results of my ovaries and tubes. Everything came back normal. So, at this point, I’ve done everything I can physically do to give myself the best chance of keeping the cancer from returning with two exceptions: losing thirty more pounds and stopping my one or two Dr. Pepper a day habit I’ve recently picked back up.
I wish this wasn’t something for me, or anyone, really, to worry about, the shadow of cancer. Yet, it is. Forty thousand people (give or take) will die in 2017 from metastatic breast cancer. No one dies from breast cancer that stays in the breast. It’s when it spreads that breast cancer becomes terminal. That’s the shadow. 30% of cases detected early will progress to Stage 4…metastatic disease. No cure.
After seeing 45’s budget proposal today, the steep cuts to arts, science, public welfare, health, I wonder if we will ever truly see a cure, a treatment to stop cancer, to stop breast cancer. What will happen to the cancer moonshot? I look at my friends and family who voted for this mess with the words “I told you so” on the tip of my tongue, but it does no good to point out the harm in 45’s healthcare proposal or this budget. The second I post anything politically motivated, some of my friends and family stop reading…stop reading my Facebook, my a Twitter, my blog, this post. Then, they’re irritated with me.
It bothered me a lot…once upon a time, their irritation and disappointment. It still bothers me because they choose to stick their heads in the sand, to say, “oh, it’ll all be ok.” But, see, I’m selfish. I want to live. I want to advocate against things like the healthcare bill and the budget. I put my money where my mouth is and donate to the ACLU and to local non-profit hospitals. I call my senators and representatives. I’ll attend my first town hall this Saturday (hopefully I’ll get in since RSVP’ing doesn’t actually guarantee you a space). I’ve responded to surveys. Just like with my health where I’m doing just about everything I can to maybe see 40, to maybe see my daughter go to high school, to maybe see my son go to middle school, I’m doing what I can do to advocate for myself even though people I love completely disagree with me, talk about me behind my back, call me selfish.
It’s okay to be selfish. I’ve had five surgeries in less than one year, 28 hellish rounds of radiation, 6 rounds of chemo, 6 rounds of Perjeta, 18 rounds of Herceptin. I’ve lost my breasts, my ovaries, my Fallopian tubes, and at times, my dignity, my strength, my hope. I am scarred, and it’s ok. Those scars remind me what I’ve been through, what I’m still going through, and hopefully, that I’ll survive. Sometimes, the only way to make it through this walk with cancer is to be selfish of my time, my energy, my thoughts, my self.
I slept for about an hour Sunday night. I watched my clock lurch closer and closer to 5:15 am, Monday morning, when A and I would need to get up and dress. When I got home yesterday afternoon, I slept for hours. Consequently, I barely slept Monday night.
I thought having my ovaries and tubes removed would be a cake walk compared to being sliced from hip bone to hip bone as I was over the summer for my DIEP reconstruction. I was wrong. I’m so sore, especially on my left side where Monday’s surgery placed a larger incision than that on my right. Also, since the incisions go through abdominal muscle, doing anything besides staying in bed hurts.
Sunday night, I posted a Dear Cancer on ihadcancer. In turn, ihadcancer posted my Dear Cancer on Twitter.
I am really tired of surgeries. I’m tired of cancer. I want this to be done, to be the last surgery, for the cancer to stay away.
To top off today, I shattered one of my back molars when I hit down on a chip at lunch. That moment turned into the straw that broke the camel’s back for me. I’m absolutely terrified of dentists, so when it shattered, I cried. It doesn’t hurt at all. Still, it’s not something else I wanted to deal with right now. So, like Scarlett, I’m choosing to deal with it tomorrow…whenever that tomorrow might be. It won’t be this week, though, if I can avoid it.
I told A that I’m embarrassed by me. Chemo wrecked some of my teeth. This molar won’t be the last tooth to give me trouble. I have more scars now than I can count on two hands. Most of them are located from my neck to my waist. I have nerve damage from surgeries. I have chemo brain. My eyebrows came back thin and sparse. The one thing I actually like is how my hair came back…same color, but it’s thicker than before and a little less fine. I’m wearing it in a pixie cut that I really like. Otherwise, I feel a mess.
It feels like I’m at another fork in the road, a curve on the cancer coaster. I don’t know what waits ahead, what lurks. Once again, I have no control.
I don’t like feeling powerless. I thrive in routines. My mom will tell you I’m particular and don’t react to change well. She’s not wrong. I didn’t react well to change as a kid, and I don’t as an adult. I like the security of the known, and with cancer, there is no known…not really.
My ovaries and Fallopian tubes joined my breasts this morning as medical waste.
That’s a fun sentence to write.
Surgery started at 7:45. I was in the recovery room by 9:10. I was home by 10:50. For once, I woke up from anesthesia without nausea. Dr. He told me everything looked good, no visual oddities, and he’ll see me in two weeks. Hopefully, he’s right. Everything is sent to pathology no matter what. I’ll call Dr. O tomorrow to let her office know the surgery is done and see what the next treatment step is. It should be cancelling the Lupron shot in April. It might be switching to Armidex from Tamoxifen immediately. I really don’t know.
I’m on bedrest today and most of tomorrow. I guess that’s ok. It’ll give me time to read since I’m rereading the Harry Potter series, and it’ll give me time to play on Pinterest.
This is the one surgery I’ve been completely ambivalent about having, but today, when I had to sign two documents acknowledging I understood this procedure would result in total, irreversible infertility, I paused.
No, A and I were not going to have another child. Too dangerous even if I had any fertility left after chemo, but there was something about being forced to put in writing that door would close to never open again.
We once said we wanted three children, and if I hadn’t miscarried in 2004, we would have had three children. We’d have a 13 year old now along with 11 year old S and 8 year old AJ. I’m never really sad over the miscarriage because I know it wasn’t meant to be, but sometimes, there’s a what-if that floats through my mind.
Cancer took away that what-if. Cancer took away so many of my what-ifs.
My great-grandmothers all lived well into their nineties, one into her hundreds.
My mother and her sisters are in their sixties and seventies.
My sister is nearly fifty.
My older cousins are in their mid forties and fifties.
A turned 37 last Friday.
It seems to me I’m the one destined to live a short life…”the sharp knife of a short life.” No more what-ifs about living to old age.
Cancer reminds me daily how fragile life truly is, how mortal we truly are, even as we fight against mortality, against growing old. What a paradox. We want to grow old because that means we’ve lived a long life, yet if we live into advanced ages, we do anything we can to avoid being seen as that age. Anti-aging creams, vitamins, surgeries all because we’re seventy and want to look fifty and because we’re fifty, we want to look forty and because we’re forty and where did that line come from, how can I look like I’m twenty?
Last year, when I had my bilateral mastectomy, I struggled so hard when I woke up in recovery and found tissue expanders instead of reconstruction. Suddenly, I had absolute, inarguable, physical proof of cancer, more physical than the port. The mastectomy cut away the cancerous parts of my body. Two parts of my body became medical waste because the left one tried to kill me. Today, I lost four more organs that are uniquely female. Four more pieces of my 39 year old body became medical waste because my left breast tried to kill me. I’m numb to it right now (but not physically numb because this discomforting ache can go away).
As of today, with the exception of losing weight, I’ve now done everything I can do to keep the cancer at bay. I had six months of taxotere, carboplatin, herceptin, and perjeta. I had another six months of just herceptin as a year of herceptin is the gold standard for HER2+ cancer. I had a bilateral mastectomy. I had auxiliary lymph node dissection of the left nodes. I began tamoxifen when the mastectomy and ALND revealed ER+ cancer and will, hopefully, be on it or Armidex for 9 more years. I had radiation. I had a bilateral salpingo-oophorectomy.
Cancer is carnage. Cancer is waste. My fate is truly, deeply out of my hands at this point, not that it ever was in my hands in the first place.
We wait. We watch. We see. There’s nothing else to be done.
Some of my family members and longtime friends would likely describe me as contrary.
They’re not wrong.
Growing up, I wanted to please everyone and be loved by everyone. I often felt overshadowed by my older sister. She had a lot of issues as a teenager, and her problems took our parents’ time. Part of me was glad she took so much time and energy because that was time I could spend on my own reading a book, writing stories, riding my bike, hanging out at my best friend’s house, daydreaming. Part of me resented she took so much time and energy, though, and it festered, bubbled through my teenage years.
When I was a teenager, I wasn’t a disaster, but I needed help…guidance, and I found it at my family’s church. I found people who realized how angry I was under the surface. I guess I began perfecting those masks and facades decades ago. They, though, refused, absolutely refused, to allow me to believe the worst about myself or the worst in myself. They refused to let me fall because I had people predicting, to me, I would be like my sister, and it made me so, so angry. They were some of the first people in my life to teach me how to block someone or something negative, and it was a lesson I needed.
I remember being seven years old and watching my mom cry about something my sister had done. I promised myself, with all childhood innocence and intensity, I would do everything possible to make sure my mom never cried like that because of me. I worked hard in school, I had a small, but close, group of friends, and I had a job. I wasn’t like my sister, yet for some, I was guilty by association. It infuriated me. And, I took to being the quiet one. The observer. The wallflower. It was easier on my soul to seek solitude, to watch from the back, to loathe the spotlight. Yet, I’m a people person, and my soul craved friends, which I had, but a lot of times, my contradictory need for solitude and my need for exuberance frustrated them
I’m a contrary soul.
Flash forward 20 years. I was 18 then. I’m 38 now. As I’ve dealt with this past year, I’ve found my need for solitude is as strong as it was when I was a kid. I need time to be quiet, to think, to read, to write, to daydream, to settle. Yet, I need my friends, I need to be around others, I need to help, to give of myself, to be a support to those who’ve supported me.
Tonight, it hit me, strongly, how very tired I am. I’m weary. I’m not anxious. I’m not sad. I’m not on the verge of a panic attack. I’m just weary. My soul craves solitude. I need time to reflect, to think, to plan. I need to sleep well. I need to go more than 8 weeks without a treatment, procedure, or an appointment. It’s mindbloggling to me, the timeline of this last year. I had a one month break between finishing chemo and my mastectomy, a three week break after the mastectomy to starting radiation, a three month break after radiation ended to my reconstruction, and an eight week break before my most recent procedure-removing my port.
September 2015-January 2016: Chemo, Perjeta, Herceptin every single three weeks. 6 hour infusions. Intense treatment.
February 2016: Bilateral mastectomy with auxiliary node dissection while continuing Herceptin.
February 2016 through April 2016: Radiation while continuing Herceptin. Intense radiation. Echocardiogram for heart function. CT scans daily
May 2016: Herceptin. No procedures.
June 2016: Herceptin. No procedures. Echocardiogram for heart function
July 2016: DIEP reconstruction while continuing Herceptin.
August 2016: Went back to work 15 days post DIEP while continuing Herceptin.
September 2016: DIEP abdominal complications. Last Herceptin.
October 2016: Port removal procedure
So, I’m weary. I’m just tired. I can’t be everything to everyone no matter how much I want to be because my soul needs me to recognize I have limits.
I can’t argue with friends who refuse to listen to logic because my soul needs me to understand it’s not my job to please every one. It’s my job to take care of me.
My soul and I agree on one thing: I’m doing better at taking care of me. I find time to meditate. I find time to read. I find time to be alone. My soul needs me to honor my needs. I can’t be me if part of me is just this weary.
I can’t fix all the problems. I can’t be mad when I have FOMO (fear of missing out) happening. I can’t allow myself to do always for others and nothing for myself because I hate being the contrary soul.
My soul, though, needs me to embrace its contrariness, to remember it’s ok to need people and solitude, to belong yet not belong. It’s ok to be me. I was this way before cancer. I’m this way after cancer. I’m meant to be this way. What my soul needs is for me to remember that, to honor that, and most of all, to accept that because if I can’t or won’t remember, honor, and accept myself, who will?
I should be working in my classroom, preparing for Monday, but this post keeps circling in my head. I can’t let it go, so it’s time to get it out.
I heard Katy Perry’s new song “Rise” when the Olympics began. It caught my attention, but I didn’t pay much attention to all the lyrics. Then, I heard it on the radio one afternoon as I drove home, and I burst into tears.
The next two weeks have the potentially to be an emotional beatdown. August 18th was the one year anniversary of hearing my OBGYN, Dr. B (who is retiring at the end of August, and I’m devastated. I can’t imagine I’m going to find another OBGYN as caring and amazing as Dr. B) tells me the place I could feel in my left breast needed further testing. Today, August 20th, is the one year anniversary of that further testing and hearing a doctor tell me he could see an area of distortion in my left breast where the mass was and it was a 50/50 shot if the area of distortion was the result of a cancerous tumor or a benign tumor. We all know how that turned out for me. He told me I needed a biopsy. August 25th will be the one year anniversary of the biopsies and hearing a different doctor tell me she was 70% sure the tumor causing the area of distortion would come back as breast cancer. August 27th will be the one year anniversary of hearing those four words: “You have breast cancer.” I’m struggling as I face these dates. I don’t mind admitting it. This is hard. I sit here and wonder, am I disease free? Is it going to come back? Is Tamoxifen and the radiation doing their jobs? Did the surgery get it all?
Then, I heard “Rise,” and the speaker of “Rise” tells my story. The first half of the song is my mindset some days, more days than not. I am trying to thrive. My ending of my story is not written yet, and someone else’s story is not my own. I am my own archetype. I’m not the damsel in distress. I’m not the heroine. I’m not any of those. I’m me, and I’m lucky because I have a family with deep roots with each other and in our communities. Those roots run through me. I am not alone in this, even when I feel alone. There are days, more days than not, where I do not feel “victory is in my veins,” but secretly, deep down, secretly, I hope it is victory which runs through my veins. The one thing I have absolutely refused to do over the last year is negotiate with my desire to survive. I demanded my doctors do everything they could to get me in at Baylor Dallas with Dr. O. I did the most rigorous course of chemo and targeted therapies I could do for HER2+ breast cancer. I did not stay home and wallow too much, but there were days that I couldn’t handle and were hard, but still, I shook them off, eventually. I came to work. I taught my classes. I graded papers. I went to every school event I could go to. I did my job as a mother to the best of my abilities. I went to their school activities. I kept up with everything as much as I could, even when I felt horrible. I refused to let cancer steal my daily life too much. Yes, there were days when cancer and cancer treatment won, but there were more days when I did, even if I didn’t feel that way. I did fight. I still fight. We ALL fight demons everyday. Self doubt. Anxiety. Diseases. Exhaustion. Whatever our demons may be. But, we push though, even when all hope looks to be lost. We still rise. I still rise.
But, there are days, there have been days, there will be days when I can’t fight. I have little faith. I doubt myself and everything about my life. I feel hopeless. It’s too hard. And that is where my better angels, my squad, my friends, coworkers, and family, come in and remind me that I will not doubt, I will not negotiate, I will fight, I will rise again. I’ll be different. Everything may be different, but I can find my way through if I just let them help. They are part of my roots, my better angels. And, as these really hard days approach, they tell me some things that helps: Someone else’s story is not your story. You have an incredible medical team. You’ve done everything you can do. This is out of your hands. We love you. We’re here for you, anytime, anywhere, anything. Here’s dinner. Take it and be quiet. I’m coming to get S and AJ for the afternoon or evening. Can I help you set up your classroom? You wear that pixie cut so well! Are you going to keep your hair that way (I don’t know…maybe. I’m enjoying the faux hawk, though)? How are you doing, and you better tell the truth. I know when you’re lying. I know your tells. Don’t treat me like a stranger. If you need to cry, cry. Here’s my shoulder.
They remind me to rise. They douse the fire at my feet. They tell me I am not out of time yet. I’m still here.
I’m still here.
I would not be here without them. They are my better angels. They are the reason I can rise on days when I want to pull the covers over my head. When I can’t, they can. My better angels prop me up when my faith is shaken and gone. They help me find my steady and my faith again. I rise because they insist I rise.
I know angels exists. I see them everyday in my life. They’re my friends, my family, my coworkers. They’re the reason the last year did not decimate me. It cracked me and it broke me, but with their help, I could put myself back together. Some pieces are missing, some pieces are irrevocably changed and forced into space, some pieces are tattered, but those pieces, they’re there. I’m still here. My story isn’t someone else’s story. We don’t know what my story is. My better angels remind me of that every single day.
An astute friend texted me on Tuesday to check on me before my doctor’s appointment. When I told her I was there alone but still intended to ask my questions, she texted me back one question: Are you sure you’re ready to hear the answers by yourself?
I answered her honestly. No. But, I needed to ask and hear. So, I went to see Dr. O by myself, armed with my questions, and quaking with nervous energy.
When I got there, I found a surprise, and as much as I hate surprises, this was a good one. A woman who had been my assistant principal when I was a high schooler was there. I’ve known her most of my life…since I was at least eight. She and my mom worked together for a long time. She was a rock for me when I was a high school student, and she’s been a rock for me since I was diagnosed. She’s a breast cancer survivor. I knew she had an appointment on Tuesday, but her appointment was hours before mine. I didn’t expect to see her, but there she was when I finished checking in.
She sat with me for quite awhile, and we talked. Or, rather, she talked while I listened. She talked to me about my fears. She understands them, but her perspective is so different from mine. She told me I have to realize I have no control over any of this. There’s no illusion of control. She told me I have to make peace with it and realize if and when it’s my time, it’s my time. No one wants it to be their time, but everyone has their time. She told me all I can control is how I treat myself and what I do to help myself. Right now, I’m not treating myself well, and I’m certainly not helping myself. She told me I have to remember that cancer may not define my end. Her husband is a police officer, and he once told her she had to stop fearing he would be shot at work when it was just as likely he could be mowing their lawn and be hit by a car that missed the curve by their house. She told me she often comes back to that conversation because it’s just as true for her…and me. She told me she understands how hard it is to live life again after cancer, treatments, surgeries, appointments, and what-ifs. She told me I have to rely on faith or find a source of strength. She told me I have to, at some point, choose to live instead of being trapped by my fear because if it’s my time, it’s my time.
That’s a bitter pill to swallow.
They called me back, and she offered to stay with me. I told her I would be okay. She made me promise to text her if I wanted company, gave me two long, much needed, hugs, and then headed on her way.
I didn’t see Dr. O. I ended up seeing her nurse practitioner, who I’ve seen before. Before I could ask anything, we realized that my chart had gotten very messed up since my surgery. We spent a good thirty minutes going back through my chart with eagle eyes. Then, she opened the can of worms and asked me, “How are you feeling?”
“Tired. I’m fatigued. I’m stressed. I’m scared. What are we doing to monitor me now? How do we know things are working? Is it dangerous for me to delay the oophrecotomy until December or beyond? What do I do now? I don’t know what to do.”
It all just spilled out.
She solved the fatigue puzzle with a look at my blood work. My counts are low. I’m very anemic. I’ve been anemic since October, but my counts had been getting better or holding steady at just below normal. Not now. They’re low. I confessed I hadn’t been taking iron because I figured it was okay to stop it since chemo was done in January. I got glared at for that brilliant move and was ordered to go back on iron. Immediately. And, I am to stay on it until a medical professional tells me to stop it, which, she told me, would likely not be until next November. She told me she wouldn’t be surprised if my counts take up to six months to rebound. I asked if it was normal to have counts like this so far out from chemo and was reminded I went straight from chemo to surgery to radiation. My body has taken a beating and a burning. My counts are low. It happens. So, they’re going to watch it a little closer.
Some vitamins are low as well. I’ve been told to start drinking a small glass of orange juice everyday.
The stress is on me. I’m doing it to myself. I’m trying to do everything full on and not asking for help or admitting how fatigued I really am to anyone. I was told to take a muscle relaxer to deal with the sore neck and shoulder muscles and to get some stress free rest. Sleep. I laughed because nothing about life is stress free right now. I was told to figure it out because I’m hurting myself.
A colleague sent me an email on Tuesday night reminding me about a training I need to attend this summer. I replied back I might not make it because I might be less than two weeks out from major surgery and asked if it’s going to be a problem. She replied with “No, and bless you for trying to be at everything even when it’s obvious you don’t feel good or are just exhausted.” I guess that’s a prime example of me stressing out and over doing.
Then, we talked about my fears and how they’re monitoring me. I swear she and my family friend must have been thought sharing because the nurse practitioner told me nearly the same thing. I have no control over any of this. I could get in my car to drive home and be in a wreck in the highway. If it’s my time, it’s my time. She told me I have to have a source of strength. She told me to remember who my oncologist is and to remember why I wanted to be with Dr. O. She told me I have to know Dr. O is watching me closely and will see me regularly. If it reoccurs, it was going to happen. She told me the only things I can do to control it are to exercise, eat better, and lose another 20 or 30 pounds. But, again, she told me, if it’s my time, it’s my time. She said there’s no rhyme or reason to cancer or if it reoccurs. She said I need to tell myself I have a chronic illness, and like any chronic illness, it’s going to require treatments.
That’s another bitter pill to swallow.
I hate…loathe…despise the fact that I have cancer. I don’t understand why I got a ticket to this roller coaster. I don’t understand why any of us end up on this ride. I seethe sometimes with how angry it makes me, or I quake with how much fear it engenders in me.
I’ve lost my youthful sense of immortality. I’ve lost my ability to see a future where I grow old with A or see S and AJ grow up. It’s impossible for me, right now, to see beyond my fear of “what if it comes back?” and I have to move beyond that fear.
I have to accept if it’s my time, it’s my time.
But, it’s a bitter pill to swallow, and I wasn’t ready to hear those words.