I’ve taken the plunge and created a Twitter for my blog. You can follow me on Twitter @those4wordsblog if you want.
He watched me cry tonight. It’s hard, walking this line, trying to be normal yet knowing you’ll never be who you were before those four words, “you have breast cancer,” came out of the doctor’s mouth.
The tears that ran down my face were tears of mourning. I cried for what I’ve lost and what I’ve gained.
I lost my breasts. I gained fake ones. I lost feeling below my belly button to create those fake ones. I gained a flatter stomach with an incision still trying to heal where fluid leaks and stitches come through the skin. I lost my hair. It’s slowly growing back. Do I want to keep it short so it’ll be easier to shave off if cancer knocks on my door again? Do I grow it out in defiance, as a middle finger, to cancer should cancer knock on my door again? I lost my sense of well-being. I gained an appreciation for moments. I lost a year of my life to treatments. I gained stiff joints and aching feet.
Pinktober is overwhelming. Being a young breast cancer patient is overwhelming. Advice comes from all corners, and it makes me question everything I do. Eventually, it becomes too much, and when it does, he watches me cry. Silent tears run hot down my cheeks. I feel safe enough to let my mask, my facade, slip away, to let the cracks show. I don’t let the mask go with many people, but I do with him.
It renders him helpless, the tears, the quiet cracking, the slipping of the mask. He wants to help, but he can’t. The emotions are mine. The losses are mine. The aches are mine. The scars are mine. He has his own, though. This journey changed him, too. Scarred him, too. He hides them easier than I do, and I’m envious.
Time hasn’t healed my wounds, yet. Maybe it never will. Maybe I don’t have enough time left for time to heal these wounds. Maybe I will be lucky and live long enough for time to scar the wounds on my soul.
I’m ready for October to be over. I’m ready for less pink. Pink is my trigger now. The sight of it, of the ribbon, fills me with apprehension. It puts me on guard for it symbolizes that which causes the tears. It reminds me of the aches and pains. Somehow, they’re more acute.
Can’t you just let it go? Can’t you just move on? Can’t you celebrate the fact you’re alive? Can’t you be you?
Look at the tears. They are my answer
I’ve always loved Halloween, but I stopped dressing up for it when I was in middle school. It didn’t seem okay. Then, I became an adult, and it still didn’t seem okay.
I’m dressing up this year.
I found out yesterday that there’s a fundraiser going on by student council, and if you donate $5, as long as you don’t wear masks or something completely out of dress code, you can dress up on Monday. Students and teachers. The fundraiser is a benefit for me and another teacher who’s battling colon cancer. I didn’t (and still don’t, not really) know what to say. Thank you doesn’t seem to be enough, but it’s the only phrase I have.
So, for the first time in 25 years, I bought myself a Halloween costume. It’s a witch costume. And, I feel gorgeous in it, from the green and black hat to the green and black wig to the crushed velvet black dress to the spider web lace cape. I’m going to wear it trick or treating with S, who’s going as Maleficent, and AJ, who’s going as a Lego Ninjago.
I have so many good memories of past Halloweens. My dad taking me trick or treating. Wearing a pumpkin costume and sitting in my grandmother’s yard with my arms and head pulled inside the costume so I could scare unsuspecting trick or treaters. An angel costume my mom and my aunt made for me. Being 17 and helping to pass out candy at a certain boy’s house, and when I left to go home, a kiss from a boy who grew into the man I married.
Breast cancer might kill me. Part of me, a part I can’t shut up or silence, is absolutely convinced it will. So, if that’s the case, screw it. I get to be silly. I get to be a 38 year old dressed up as a witch. I get to feel pretty, which I haven’t felt in a long time. I get to go trick or treating with S and AJ, hoping they remember me with them as vividly as I remember my dad trick or treating with me.
After all, if breast cancer does kill me, I want my life defined by moments unrelated to my stupid cells that went stupid and caused me to develop cancer. I want to be remembered as more than a woman with breast cancer.
Politics and Cancer Care Part 1-previous post
I know the likelihood of this post changing anyone’s vote, especially since early voting opened in Texas yesterday, is slim to none, but I’m putting this out here and hoping I can at least make someone think.
Over the weekend, Trump published what his focus would be for his first 100 days, and of course, on the list was repealing and replacing the Affordable Care Act. His proposal is to replace it with HSAs and the ability to buy insurance across state lines. Fully repealing the ACA means the loss of protections many of us like and enjoy about Obamacare.
If Trump is elected, if Trump is able to repeal the ACA and replace it with this proposal, here’s what I lose:
- Protections from being dropped by my insurance company.
- Protections from pre-existing condition clauses
- Protections from annual maximums
- Protections from lifetime maximums
…to name a few.
And those few, that’s enough to ensure my vote does not go to the Republican nominee.
I got into a Facebook argument with a friend’s friend on a political post. I know, I know…stay out of Facebook arguments. No good comes from it and that’s how you lose IQ points, but I couldn’t help it. I said I couldn’t vote for Trump because his policies scare me. I specifically referenced the ACA. I may as well have been talking to a brick wall that was capable of yelling nothing but the Fox News playbook: Benghazi! Emails! Bill! I refused to engage on those issues (and will refuse to engage on those issues…I never said, and do not believe, Clinton is perfect).
I kept bringing my point to this: I am a breast cancer recoverer. Thanks to the ACA, I didn’t lose my health insurance last year. Thanks to the ACA, I didn’t have to worry about what I would do if I hit an annual maximum. Thanks to the ACA, I didn’t have to worry about so much.
I did some math (stop laughing…I used a calculator). All said and done, rounded down, all of my treatments and surgeries from last year cost in the ballpark of $300,000. Yes, three hundred THOUSAND dollars.
So, please, tell me more how repealing and replacing Obamacare will protect me, or others like me who have catastrophic illnesses or pre existing conditions? Please, tell me more about how the Republican party is the party of life? Please, tell me more about how the Republican party is the party of morals?
You lose your right to tell me Obamacare is the devil when I’m sitting here alive because my insurance company could not do what insurance companies have done in the past to women with breast cancer prior to the ACA by dropping coverage.
Here’s the facts:
I’ve worked for 17 years. I began my teaching career two days after I graduated from college. I’ve never gone without health insurance. I went from my mother’s plan, which covered me while I was a full-time college student, to paying for my own. I’ve paid health insurance for 17 years with the ignorant expectation that I would never really need it except for having children or if I had car accident. Otherwise, pffft, I’m young. I’m healthy. I don’t need to worry about my health. My family has long lived people. I’ll be fine.
2015. Age 37. Breast cancer.
And, I deserve to be able to use my health insurance without fear.
So, when I say my health drives my vote…my health drives my vote.
I’ve worked hard for 17 years in a profession that I love and is my passion. I went to work nearly every single day while undergoing TCHP chemo and every single day as I endured hellish radiation that left me with burns so bad, I still have a “tan” from them, that brought me to tears every single time I had to do a burn treatment.
I’ve paid for 17 years, and continue to pay, for my health insurance. I deserve protection from worrying about losing my insurance, from worrying about what happens if I meet a maximum. We ALL deserve protection from those worries. The ACA has problems, but the protections keep us ALL safe.
I want to give myself the opportunity to be with my children for a few more years, and the Republican party has proven to me, again and again, over the last several months, not only do I not matter because I’m a woman, but worse, I’m a woman with breast cancer. I got sick. I must have done something to deserve it, and we don’t want to pay for you.
Cool…Except, you’re not paying for me. I’ve paid for 17 years.
And, I’m not voting for you.
…move on? I mean, you had cancer. As far as you know, you don’t have cancer right now. Stop saying you have cancer. You had cancer.
I almost feel like Tom Riddle…Lord Voldemort is my past, present, and future, but in this case, I’m not a crazy wizard, and my Lord Voldemort is cancer.
It isn’t something I can just get over. It isn’t a cold. It isn’t an allergy attack. It’s a life threatening illness. It could reoccur at anytime for any reason, and the lack of control I have over this is overwhelming.
So, no, I can’t just move on. I’m in recovery. I’ve decided that’s my term. I’m a Recoverer. Maybe I’ll be a Recoverer for years and years. Maybe not. I’m in recovery. I can handle that term. If you can’t handle, though, that breast cancer drives my fears, my hopes, my dreams, my decisions, my votes…well, can’t you just understand I’ve dealt with an enemy I hope you never cross and never know?
Can’t you just understand I’m not the same person I was, but I’m trying? Can’t you just understand there are going to be good days and bad days? Can’t you just support me instead of asking me to move on?
I’m sorry not sorry I’m not handling the aftermath the way you think I should handle it. Maybe when you’ve walked my shoes, you can tell me the best way to handle the aftermath. For now, I’m handling it the best I know how, so can’t you just listen instead of reply? Can’t you just think before you speak? Can’t you stop yourself from offering advice?
Atticus had it right…put on someone else’s shoes and walk around in them. Maybe then you’ll understand. I’m happy to hand you my Vans. See how they fit you.
I use my blog as a way for me to work through my fears and thoughts about my breast cancer diagnosis. I struggle sometimes to articulate just how strongly I feel about what’s happened to me. Then, tonight, a friend linked me this article on HuffPo, “The Missing Conversation in Pinktober: Emotional Scars of Breast Cancer.”
I read the article as A drove us home from a family dinner where we fairly studiously avoid political discussion because when we don’t, my father-in-law and I often end up yelling, lovingly, at one another about our political views. As I read the article, I felt gut punched. Here, finally, someone articulated exactly how I feel about pinktober, pink ribbons, and everything happy, happy about breast cancer according to some awareness campaigns.
Dr. H was the first doctor I told I was struggling with panic attacks after my diagnosis. Dr. B was the first doctor I told I couldn’t sleep for more than a couple of hours. The two of them immediately put me on an OTC sleep aid and Xanax. Dr. O nixed the OTC for Ambien. Why am I admitting this in public? I needed help coping with what was happening to me. Insomnia was already a good friend, but when cancer happened, insomnia moved right on in and made itself at home. I slept in two hour stretches. If I was lucky, I slept maybe three or four hours total. The level of anxiety I experienced after my diagnosis was a level I’d never experienced prior to cancer. I’m lucky. My doctors don’t just ask me how I’m feeling physically. They ask how I’m feeling in totality. Dr. H was the first doctor to suggest to me that I needed to think about talking to someone. She was the first to talk to me about trauma and cancer.
As much as I wish I could avoid the realities of what’s happened to me, I can’t. I see it in the mirror every time I change clothes. I can’t avoid the reminders. I’ve had panic attacks simply from walking into the Sammons Center. Pink ribbons are reminders. Pink campaigns are reminders. I cannot avoid the reminders.
I’m not weak. I’m just scarred, inside and outside. This article put it all into words for me. It’s a gut punch for me.
I need to be asleep. I’m exhausted. I’ve been exhausted for days. Yet, I’m still awake, grappling with the fact that tomorrow is a pink out day. Do I wear the one shirt I have with a pink ribbon that announces my boobs are fake because the real ones tried to kill me? I’m uncomfortable in it. I bought it because I though it would be fun to wear, but it’s not. It announces me as a breast cancer patient. I am more than breast cancer. I don’t want to wear it. I’m just not comfortable with it…with being the 30 something with breast cancer.
I’m pinked out. I’ll give pinkwashing this: it’s made breast cancer socially acceptable instead of a disease talked about in hushed voices. I know it’s helped research and awareness. But..
For me, it’s hard to be a breast cancer person in October. I’m not a joiner. I don’t enjoy the spotlight. I’m a somewhat private person in real life. I have a small group of very close friends who I share openly with, who I don’t keep many secrets from, but outside of them, I slide on my mask. I’ve been told I’m aloof, snobby, stuck up, and I guess I seem that way, but it’s shyness. I don’t want to be disliked, cause drama, or anything else my brain can conjure. I can, and do, pretend to be happy-go-lucky, outgoing, gregarious, but it’s not really me. Neither is pink.
I saw a commercial earlier this evening extolling the virtues of pink, of women who’ve endured breast cancer. Strong. Steady. That’s not me, though. And, that’s why I’m not pink.
I just don’t fit the pink mold. I haven’t fit a lot of molds I should’ve fit. The pink narrative isn’t me. I tried to embrace it at the very beginning of this roller coaster, but it just isn’t me. I haven’t come through treatment a more gracious person. I haven’t mastered suffering with a smile on my face. I don’t feel as though I’m a better person…I don’t know I was that bad of a person to start. I don’t think I’m stronger. I just don’t see myself in the commercializations of pink.
Save the boobies.
Big or small, save them all.
Save second base.
Save the tatas.
I’ve come to hate pink, to dread pinktober. Breast cancer is not cute. Breast cancer is not pretty. Breast cancer is not sexy. Breast cancer is not easy. Breast cancer is not a “good” cancer.
Breast cancer is scars, fears, scans, tears. Breast cancer is surgeries and treatments. Breast cancer is anger, hope, terror, acceptance.
Breast cancer, metastatic breast cancer, is teal and pink and green. Metastatic breast cancer kills approximately 40,000 men and women a year. Pink leaves out Stage 4 lifers.
Pink leaves out the day-to-day realty of breast cancer. I wish pinktober realized that fact.
I want pink to find more treatments for all stages and grades of breast cancer. I want pink to help breast cancer patients and their families. I want pink to spend more money on research than executive salaries and administration fees.
I want breast cancer to mean more than pink. I want to mean more than pink.
I hate pink.
I have a reoccurring dream involving a stairwell. It looks like the kind of stairwell you might see in a large building. It’s gray and cold and metal and harshly lit with florescent lights. Some nights, I dream I’m running up the stairs. I exit a door, and there’s always somewhere there I know. Sometimes we talk, sometimes we don’t. Some nights, I dream I’m running down the stairs. I don’t know where they end. I’ve never reached the bottom in my dreams. The nights when I dream I’m going up and down the stairs are the nights when I don’t sleep well; I wake up out of sorts, confused, tired, and a little discombobulated. On those nights, when I have to go down the stairs, they’re a little different every time. Sometimes the stairs are taller, bigger, higher. Sometimes I have to climb the stairs. Literally, I have to climb them as though I’m climbing a tree. Sometimes the stairs are narrow, and I have to pay close attention as I walk or I’ll trip and fall, which I’ve done in my dream. When I go up them, there’s always someone there who gives me something to do, and it always involves going back down the stairwell.
It’s such a strange, strange dream.
I have no idea what it means, and I don’t know that I really care. It’s just strange, and it keeps happening. It’s a vivid dream. It sticks out to me because of its strangeness. Apparently, dreaming about stairs relates to the idea of moving forward or backwards in your life. Maybe that’s why I keep dreaming about them…one step forward, two steps back. That’s how it feels sometimes. But, why am I trapped in a stairwell? That’s what I don’t understand. What’s the cold, gray, metal room? Cancer? Hospital?
I don’t know that I want to know. I really don’t.
It’s just a strange, strange dream.
Annnnnddddd another part of incision has reopened. It’s leaking. It’s all on my cursed left side. Breast cancer. Left side. Extensive radiation. Left side. Surgeries galore. Left side. Complications from DIEP reconstruction. Left side.
My scar is fairly unnoticeable now from the middle of my stomach across to my right hipbone now. I can’t say the same for the left. Start in the middle and go to my left hipbone. It’s a mess. A hole. A healing split. A new opening…could be a split, could be a hole…who knows what it’ll be when it grows up! The scar line is still slightly swollen. So. Back into the abdominal binder I go, again. Every single time I’ve been told I can reduce from wearing it 23/7 to 8/7, complications begin.
I’m 5000% over complications and slow healing. My skin is reacting to all adhesives again…even bandaids cause my skin to turn red, angry, and blister around the edge of the bandaid. Tegaderm, a fairly gentle adhesive bandage, has caused giant, sore blisters about 2 inches under my port surgery removal site. They’re in a perfect, bumpy, red line.
Dr. L warned me DIEP reconstruction can have a high complication rate, and he warned me healing could take much longer than expected. I should’ve listened better.
I went back to work 15 days after DIEP because I had no more sick days to use and couldn’t really afford to be docked. Yes, I felt as though I could handle it, and yes, I wanted to go back to work. But, I also didn’t want to be docked. That’s the truth. I get 7 days a year. I can carry them over from year to year, but when you’ve had to take off a few days here because your grandfather died and another few days because your grandmother died and a week because you got married and a week because your new husband’s grandmother died and two months because your daughter was born during the school year and random days here and there for illness and family emergencies, the days don’t last. Add cancer to the mix?
I felt like I was ready and could handle going back, but I know now I had no business jumping back into life. I pushed myself too fast, too hard, too much. So, I guess much of this situation is of my own making.
Maybe if I’d taken better care of myself two months ago, I’d’ve healed better by now. Maybe these complications would’ve happened no matter what. Maybe I’ll completely heal one day…mind, body, spirit, soul. Or, maybe, maybe I’m setting my expectations too high.
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?