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.
A year ago, I had my port removed. It served its purpose.
A year ago, we started getting ready to move, again, because our dream house was a month from being completed.
My husband’s motto for us is the cliche “You only live once” because the two of us know the fragility of life. It changes in an instant. So, a year ago, we started doing the things we’d been putting off -selling our house, pursuing career options, planning family trips. We are a lot less focused on the intangible.
A little over two years ago, I made the decision to return to the classroom as a teacher. I’ve never looked back, never questioned the decision, and I’m happier for it. This year, A made the decision to find a new job closer to home, scrapping his hour to an hour and a half commute. He found a position which challenges and fulfills him as much as his other job did.
We keep making changes, some big, like career changes, and some little. We’ve lived in the shadow of cancer and reoccurrence for two years now. So far, it’s no easier. Reminders from On This Day catch me off guard. Answering innocent questions about my port scar on my neck make me cringe. Today, AJ asked me about it. He’s forgotten about my port and those surgeries. Those were little surgeries to him. I was home within hours of those.
Oncologists talk about survival rates in years, in appointments in years. As a HER2+ cancer recoverer, I don’t get to go to six months and once a years until I’ve been no evidence of disease for seven years, or that’s Dr. O’s standard. I graduated to twenty week check ups with her, was yanked back to twelve week check up because of Arimidex, and am now to sixteen weeks because of my anxiety at my last appointment. I might return to twenty week check ups, but not until next summer. If I make it to three years with no evidence of disease, I’ll still be on twenty week check ups. Same for four years. At five years, Dr. O said she would go to six month check ups. Same for six years and seven. If I make it through year seven with no evidence of disease, I graduate to one year check ups…for the rest of my life.
Cancer is a never ending marathon.
Maybe one day, my picture quote will ring completely true for me. It’s not right now.
I’m not strong and full of fire.
My passion does burn, though, but not brighter than my fears.
Today was Pink Out for Breast Cancer Awareness day at my school.
I didn’t wear pink. Instead, I wore one of my Stand Up to Cancer t-shirts. It’s orange and white and gray. It’s pretty much the antithesis of the bright pink of breast cancer.
I came thisclose to wearing my black and blue wig. If my wigs weren’t still in storage, I would’ve.
Look, I understand that for many, the Pinktober and all the pink gives them hope, fills them with emotion, and unites them. I get it. I really do.
I’m just not one of them. I hate the sight of the pink ribbon. My 12 year old daughter can’t stand the color pink or the pink ribbon.
It’s painful for me, for us.
It’s a reminder that breast cancer puts my life at risk every single day. It’s a trigger for me, and I don’t say that lightly. My oncologist is pushing through a referral to a Baylor Dallas psychologist who deals solely with those who have been diagnosed with breast cancer because for the two weeks leading up to my 3-month checkup, I became so anxious and scared it truly affected my quality of life. Both Dr. O and Dr. H, who I see next week for my six month check up with her, see symptoms of PTSD in me. I can’t put into words how awful that makes me feel about myself -cancer and severe anxiety? Yet, I’m supposed to revere the pink ribbon and celebrate Pinktober…Are you kidding me?
I live with breast cancer and its aftermath every single day. I consistently return to places that are painful -Sammons and Methodist. I have had literal panic attacks stepping out of the elevator to the 4th floor of the Sammons building. I have sobbed stepping into Dr. H’s office. I guess that makes me weak, the fact I can’t get over the fact I had breast cancer. That I became a pre existing condition. That I became a liability. That I became a statistic.
So, in all sincerity, forgive me for my inability to participate in pink outs, to see good in the pink ribbon, or to celebrate Pinktober.
*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.
My phone rang at 2:20 this afternoon. The screen said Texas Oncology. Today is Tuesday. Today is the day Dr. O would call if something showed up on the scan.
I didn’t like seeing that caller ID on my phone. My heart raced, but I knew it could also be Dr. O’s nurse with referral or medication information. For a split second, I thought of sending the call to voicemail. But, I didn’t. I answered the phone as I walked out of my classroom.
The call was to update me about the referral (it’s in progress). After the nurse finished giving me the update, I told her my first thought was this call had something to do with the scan since today is Tuesday. She went quiet for a minute before saying, “Nope…scan looks good. Nothing on it. We’ll rescan in a year.”
I thanked her, ended the call, and bent over, hands to knees just to breathe for a minute or two. I might have stayed that way longer if not for a junior who saw me in the hall and asked me if I was ok. I plastered on my smile, told her everything was fine, and I went back to my classroom.
I posted my news on Twitter.
I planned my lessons for the next grading cycle.
I came home.
The kids came home.
S did homework.
AJ went to a friend’s house for a bit and then went to karate.
S and I window shopped for Halloween.
I picked up AJ.
We came home.
S drew and watched TV.
The kids said their good nights.
The house grew quiet.
The daily routine of family life, of my life, a daily routine I cherish even when it makes me crazed, a daily routine I would not have without Dr. O and the American Cancer Society (Herceptin).
I have a choice, the same choice I’ve had for over two years: be ruled by my fear or rule my fear.
I’m not sure what’s going to happen. I know, at this moment, I’m profoundly grateful to be stable with no detectable amount of active cancer in my body. I know that could change at any time, or I may remain no evidence of disease for the rest of my life.
I’m not ready to commit to saying I’m done being afraid. I’ve had cancer. One of my nightmares came true. I’m not sure I’ll ever be done being afraid of it. What I can commit to is finding a better way to cope. I deserve that.
No grandiose promises, no unsustainable commitments.
…said Dr. O to me today as I sat with her in the exam room while tears ran down my face.
The good news: my blood work was mostly normal (dehydration and kidney function don’t play well together).
The bad news: I had a wreck as I left the cancer center. I’m fine. My car…not so much. It’s drivable, but the front driver’s side is not ok. As I was leaving the cancer center’s underground garage, I hit a concrete column. I didn’t see it. I wasn’t going fast, so that’s good, but my car is messed up.
I’ll get the results of my scans sometime next week if there’s something to discuss. Otherwise, I go back in 16 weeks…unless…
Dr. O wants me to start on Zometa. She said studies show it significantly decreases the rate of reoccurrence for ER+ cancer. I told her I’ll do whatever I need to do. So, she’s putting in the preauthorization paperwork. When it goes through, if it’s approved, I’ll have Zometa infusions twice a year for the next several years.
We talked about how crippling my anxiety has been for the last two weeks as this appointment crept closer. She said the same thing the cancer counselor said -I’m traumatized from everything I’ve been through over the last two years. She’s putting through another request to my insurance to approve me to see the cancer psychologist at Baylor. Apparently one of the cancer psychologists deals only with breast cancer survivors. Dr. O wants me to see this psychologist. I agreed. Whatever I have to do to be happier and less anxious is worth it.
Dr. O also clarified some things for me. I thought because there was cancer left behind when I had my mastectomy that meant I did not have a complete pathological response (cPr) to TCHP. Googling led me to believe since I did not, as I understood it, have a cPr, my risk of reoccurrence was as high as 60-70%.
I was wrong. Really wrong.
Dr. O told me I did have a cPr to TCHP. None of the HER2 was left. She said that’s a cPr. She said if HER2 had still been there, my after surgery treatment would have been vastly different. Dr. O told me with a cPr from TCHP, the reoccurrence rate could be as low as 5% for the HER2. As for the ER, she said the only other thing, medically, I can do is Zometa. I’m doing everything else.
So, as long as my scans are clear, I’ll see her in 16 weeks and will start Zometa infusions as soon as we get insurance approval.
I felt such relief when I left her office. It lasted for about twenty minutes. Then, my car decided to become friendly with a concrete column. ¯\_(ツ)_/¯
So, now I wait, hoping for no news this coming week since no news means clear scans yet hoping for news in the coming weeks so I can start on Zometa.
I couldn’t have a better oncologist. I’m so grateful Dr. O took me as patient. Tonight, I’m going to bed, and I’m going to sleep peacefully.
I’m melancholy today. I fear what tomorrow might bring, what Dr. O may say. People tell me this will eventually become easier, but honestly, I truly doubt it. How can this ever become easier, this precipice on which I stand? These appointments where my blood is taken, shaken, and tested, where my scarred body is examined, where my insides are xrayed, looking for the uninvited interloper, are not easy. I am anxious and scared. I feel no different than I did twelve weeks ago, yet I felt completely healthy as cancer grew insidiously inside me, so am I truly the best judge if whether I’m fine? My track record says no.
As I walked down one of the hallways at work today, thoughts of cancer and fears of reoccurrence swirling in my mind, a singular thought stopped me, stopped me in the middle of the hallway, stopped me cold.
I believe it’s too late for me.
I’ve waited too long to adjust my lifestyle. I’ve waited too long to get my insomnia under control. I’ve waited too long to lose weight. I’ve waited too long to start doing anything which could keep the cancer at bay beyond the medications I take everyday.
I deeply, truly believe I’ve waited too long, it’s too late.
What a horrible, terrible thought.
It’s not only what I think, though, I realized as I stood in the hallway, alone, this afternoon. It’s what I believe, and truthfully, I’ve believed it from the moment I was diagnosed. I knew long before that fateful August afternoon that I needed to lose weight, eat better, stop drinking 4-6 Coca-Colas a day, exercise, and sleep more. I knew, and I did nothing until I was told I had breast cancer. Even then, I did little. I cut Coca Cola. Chemo helped me lose thirty five pounds. I’ve gained back some of that weight. I drink one or two Dr. Peppers most days. I’ve stopped my evening walks because I’m tired after work. I have a million excuses, a million moments of shame.
I look in the mirror, and I am sad by what I see, pieced back together with other pieces of me. I am sad to see the weight I’ve gained. I am sad to see the scars, more noticeable to me right now than usual. I know it’s anxiety because of my appointment tomorrow. I’m in limbo. I seem to live in limbo lately.
As much as I try to stay away from breast cancer sites, I lurk on a breast cancer community’s message boards. Yesterday, I read a post from a woman at Stage 4 who wrote to others newly diagnosed with the same breast cancer I had, that they should not worry about a reoccurrence. If it comes back, it comes back. The worry did nothing. She wrote if she could go back in time to when she was NED (no evidence of disease), she would enjoy every single one of those days instead of spending them worried about a reoccurrence.
I want to make myself stop worrying and to just enjoy whatever time I have, but I haven’t found a way to do it. Today, in the hallway, I think I discovered why I can’t get there. I believe it’s already too late.
of Republicans trying to kill me through healthcare bills that are nothing more than deathcare bills
of feeling like my concerns don’t matter
of worrying the cancer is back
of wondering what I did wrong
of wondering if I’ll see my kids grow up
of not being good enough
of being told “it’s going to be ok” when you don’t know that
of not sleeping
of letting myself down every morning by sleeping through my alarm instead of getting up early and going for a walk
of crying from exhaustion
of feeling I don’t matter
of being my own worst enemy
I’m a wreck wearing a mask, dreading my next check up, terrified of seeing Dr. O because what if the cancer is back even though I don’t feel any different than I did 12 weeks ago? What if the scans show it’s back? What will I do?