This has been me over the last three weeks. I cry where no one can hear or see me. I wipe my tears and put myself back together. I keep going. No one hugs me or rubs my back or says meaningless platitudes because honestly, I don’t let them. As a child, I became a master of hiding my feelings. It’s not a talent I’ve lost as an adult. This week, though, I’ve cracked a lot more. The facade has broken a lot more, and it keeps happening at work during my conference period. In other words, at the worst damned time.
I have fear of missing out at work. I always have. Consequently, I work as hard as I can. I want to do better, be better. I want to learn new things, try new techniques. I expect so much of myself as a teacher, but after last week, I feel so inadequate as a teacher.
I have the wrong master’s degree. Two years ago, I earned a Master of Educational Leadership. I thought I wanted to go into administration.
I was wrong. I don’t. I belong in a classroom. I know that with every fiber of my being. I didn’t even bother to take the principal certification exam even though I made an A on the pretest my university requires of all principal test candidates. I knew by then I didn’t want to be a principal. By then, cancer had come calling and had shown me, very quickly, what I’m really meant to do.
It’s increasingly becoming the expectation that you have a master’s degree in your subject or a master’s in something with 18 hours in your subject. I need five more English classes to have 18 hours of graduate English. Five classes.
I can’t afford them right now. And, I feel an urgency to get them, to do it right now, but I can’t. We can’t afford it, and A is vehemently against me taking out any loans because we have to think about our finances.
He’s not wrong, but it’s a bitter, bitter pill I’ve been trying to swallow since Thursday night. See, Thursday I found out I’ve been accepted to an accelerated Master of English program. I can’t accept the offer. I can’t afford it.
It’s a bitter, bitter pill. I’ll apply to a few other programs that are a little cheaper, but even then…it’s doubtful.
I feel like so many opportunities are going to pass me by because I worked my tail off on the wrong master’s degree, a degree I was proud of, but now? I regret it and am so angry I made another wrong decision in my life. What a waste.
I’m going to be 40 this week. 40. At least I lived to see it, but damn, is it really all downhill from here? It feels like it, especially now. I have a mountain of debt from cancer. I have a mountain of credit debt again (see cancer debt). I have so many regrets. I’ll never be rich. I don’t want to be, but I wish things were easier. I wish they were different. I wish I were different. I wish I weren’t sad and angry, but I am.
40 years have almost passed for me. I’m angry and full of regret, so really, I guess it’s no different than any other birthday for me.
My self esteem took a nosedive on Friday for no other reason than I looked in a mirror as I changed clothes.
Scars everywhere on my torso. Port. Mastectomy. DIEP reconstruction. Oophorectomy. 7 scars. Seven vivid reminders of cancer.
Sometimes, it’s just too much, and Friday, the second anniversary of my mastectomy, the second anniversary of finding cancer in the sentinel nodes, the second anniversary of finding ER+ cancer in the breast tissue, the scars overwhelmed.
My life has changed so much over the last two years. Sometimes it catches up to me.
My mind is consumed right now with worries and concerns that aren’t truly mine to bear, yet I feel if I don’t shoulder them in some way, no one will. Some are above my role, so to speak. Some are on my shoulders because others put them there for they don’t know how to carry them, or worse, don’t want to do so.
My mind spins.
I want to scream at the world, but the wind would just blow it back to me.
This is my safe space, my place to process, the place cancer created, but not a single worry and concern on my shoulders right now relates to cancer. I was no evidence of disease at my check up and blood work on Monday. For that news alone, I am grateful. I am humbled. I am relieved.
Yet, I am Sisyphus. The rock I push rolled back down the mountain on Friday, not from cancer. Thankfully, not from cancer. As I look at the rock, I question my ability to shove it, inch by painstaking inch, back up the mountain, for this time, is the burden truly mine to bear? My heart says yes, my gut says yes, and I’ve made it a point over the last three years to listen to my heart and gut instead of my brain. So, I square up in front of the rock, this boulder, this weight upon my shoulders. And, I take a step. The rock doesn’t budge, but I stand here with all my weight pressed into it, willing it to move up the mountain, just a bit because if I move and let go, I don’t know that anyone will move in to take my place, to hold the rock steady, to push the rock, to assume the burden.
This has been my role for as long as I can remember, shouldering burdens that are not mine to bear, taking blame for problems I did not create but feel responsibility.
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?
1. Everything is estrogen, and my cancer was strongly estrogen positive; therefore, I’m doing everything wrong if I’m trying to stop my cancer from returning.
2. I’m 39 years old and still haven’t learned to keep my damned mouth shut.
3. When I think I being helpful, I’m not. See #2.
4. Cortisol, the stress hormone, causes fat storage and if I were less stressed, I would lose weight, and I need to lose weight because fat causes estrogen, my cancer was estrogen positive. See #1.
5. I can’t sleep because I’m not listening to my body. When my body says it’s tired, I should go to bed. The fact that I do and lay there for hours means I didn’t listen well enough.
6. I’m a smart person, and I can solve all my issues by stopping negative thoughts.
7. Since I had my ovaries and tubes removed to stop estrogen production, I’ve thrown my body out of balance, but it was necessary because everything is estrogen. See #1.
8. From now on, every time I reach for a Dr. Pepper or fried food or fast food or TV dinner, I need to remember they are estrogen in disguise. See #1.
9. By choosing to mask my true feelings about my cancer diagnosis in order to protect others, I’m failing at being good to myself, which causes stress. See #4 and #1.
10. I fail at being supportive enough to others. See #1, #2, #3, #4, and #9.
If anyone wants me, I’ll be Dimmesdale’ing myself in my master closet, looking over my shoulder in defiance of God’s warning while hoping not to turn into a pillar of salt, pushing my rock up the mountain, and ignoring the sword hanging over my head.
Facebook On This Day popped up a memory from two years ago today that I would like to forget. I had just had chemo 3, and as typical for my chemo cocktail, by day 5 post treatment, I didn’t feel great, but chemo 3 was different. By then, Taxotere, carboplatin, perjeta, and Herceptin had begun building up in my system. My counts were lowered. I caught a cold. Perjeta can have side effects on digestive systems and skin, and boy, did it on mine. Three days post treatment, the digestive effects were in full swing, and the medicine was barely keeping them manageable. Five days post treatment, I woke up with my right thigh covered in red, angry, painful pustules. I slapped bandages on them and went to work, making sure my other medicines were in my bag. Six days post chemo 3, I woke up with a scratchy voice, still painful skin on my right thigh with more pustules, and a new embarrassing side effect, an extremely painful one, too, related to the digestive issues. I went to work anyway. I slapped on my make up, my wig, my fake smile, a soft pair of gray pants, a grey sweater, a scarf, and no one knew anything was wrong…except my assistant principal who’s known me for nearly fifteen years. She side eyed me all day. Then…day 7 happened. In my sleep, I’d scratched my thigh. I’d opened some of the pustules. They were angrier, redder, more painful. My stomach couldn’t take anything but water. The other digestive side effect, the embarrassing one, was worse. I sat down on the bathroom floor and sobbed. Against A’s wishes, I got up off the floor, I put bandages on, I pulled on a pair of soft jeans, a navy blue sweater, a scarf, minimal make up, my wig, and my brown boots, and I went to work. I made it until second period. I had to walk my class to an assembly. I made it down my hall to the main hall, and I just couldn’t walk any farther. It just hurt too much. No matter what I did, friction hit the painful places. Skin to skin. Jean fabric to skin. Bandages to skin. My skin, all of it, just hurt. I couldn’t do it. I couldn’t be the person I wanted to be -the cancer patient who breezed through chemo without missing work or sliding on their obligations. I couldn’t do it. I leaned on the wall and burst into tears. My AP who had been side eyeing me for days and my head principal saw me. Both came to me immediately, concern etched on their faces. They surrounded me, and I told them I was ok, just tired -my usual answer to “How are you?” I really don’t believe anyone asks that question for any reason but polite speech. Fortunately, neither believed me, and even as my face burned red and my skin ached, they got me to tell the entire tale. They sent me home and made me promise to call my doctor. And, I did. I called Dr. O. I sent her pictures, at her request. She put me on very strong antibiotics, some skin cream, and made me an appointment with a colon specialist for the next day. I missed work that Friday to sleep, to let the antibiotics work, to let my body try and heal, and to see the colon doctor. By that next Monday, I finally, finally, felt better. I went back to school. The antibiotics worked their magic, the colon doctor worked some magic, and I still felt typically terrible, tired with a bad taste in my mouth, but at least my skin didn’t hurt as badly.
I needed people to look out for me. I needed people at work who truly, deeply cared for me, who cared enough to look beyond my mask and to see I was not ok. Sending me home that day, making me promise to call Dr. O, probably saved me from a hospital visit. I didn’t realize the skin problem was as bad as it was. I did though when I picked my antibiotics up and the pharmacist explained them to me. I didn’t realize how close I was to a systemic infection, but I knew how devastating one was to a person with a compromised immune system like mine was at the time.
I needed people who cared enough to look beyond my mask, to break my code, and they did…they do. They are some of the few who care enough to try. For that, I am grateful.
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.
Today is the first day in five days I have not woken up with a headache. It’s been a dull headache, not often in the same place. Yesterday, it was my left temple. Day before, it was around the top of my head. Day before that, it was at the base of my head and top of my neck. I bet anyone can guess what my first thought was -brain mets. I’ve taken Excedrin Migraine on and off all week.
I woke up this morning without the headache. A’s been very sick most of this week. He has bronchitis, and the cough he has is ridiculous. It kept me up most of last Sunday night and Monday night. I slept upstairs on the air mattress on Wednesday and Thursday nights. I didn’t sleep well there either. That mattress is too hard. Last night, A insisted I sleep in our room. So, before I went to bed, because I still had that dull headache living in my temple, I took 2 Aleve…and, for the first time in a very long time, I took my anxiety medicine. It’s not something I take regularly. I have it for an as needed basis. I’m not going to lie, I’ve been fighting a low level panic attack for awhile. Two women I follow on Twitter and Facebook with Stage 4 breast cancer died this week, both young women. Neither with the kind of breast cancer I had nor diagnosed at the same stage or grade I had. Still, every breast cancer death I hear of hits me hard.
It reminds me I’m always one blood test, one scan away from another cancer diagnosis.
The headache I’ve had kept me in a low level of panic. What if it’s brain mets? That was my question every morning. And, yes, I Googled symptoms of brain mets. Nausea. Vomiting. Progressive headache. Weakness on one side. Loss of appetite. Vision disturbances. Distorted sense of taste or smell. Seizures. I don’t have any of those. The headache isn’t progressive. It’s been the same every day until today when I woke up with out it.
You know, before cancer, I would attribute a headache like this to Texas weather. Our weather in DFW this week has been stereotypical Texas weather. We’ve gone from a cold front with sleet to record setting highs to normal fall weather and back to summer weather. It’s so stupid. Before cancer, I would curse Texas weather messing with air pressure and all that. But, I had cancer, so every ache and pain gets side eyed. Is it a recurrence? Am I okay?
My head doesn’t ache today. It does feel full…a little pressure. But, it doesn’t hurt.
I’m still side eyeing it.
I fear normal aches and pains. I’m nearly 40. I know there are going to be aches and pains, but dammit, I had cancer. That makes everything suspicious, and I freaking HATE it.
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.
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.
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.