breast cancer, life

Things I learned today -Today sucked edition

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.

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breast cancer, Uncategorized

Pain Fear

cancer face
Found on Pinterest. No infringement intended.

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.

breast cancer, life, Uncategorized

Where Pinktober fails

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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.

Thanks cancer…

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.

breast cancer, life, Uncategorized

Stop Googling…

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From someecards. No infringement intended.

…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 hope.

breast cancer, life, Uncategorized

Is it too late?

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Found on Pinterest. No infringement intended.

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.

breast cancer, life, Uncategorized

Pretending

sometimes all you can do

I’m tired…

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 cancer

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 spent.

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?

I’m tired.

I’m spent.

I’m a wreck.

breast cancer, family, life, Uncategorized

My Spoons Are Running Low

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I’ve never been good at saying no. I’ve never been good at asking for help. I’ve never been good at admitting I’m overwhelmed. I’ve never been good at putting my needs ahead of those I love.

But, I’m running out of spoons.

My dad is not doing as well as we hoped after having surgery almost six weeks ago. He has little to no movement on his left side. He’s wheelchair or bed bound at the rehab hospital. He does hours of physical therapy. He’s remarkably better than he was a few weeks ago, but he’s nowhere near how he was this time last year. I’m worried sick about how my mom will handle him at home in a house that is in no way wheelchair accessible.

My sister is back in the picture. I didn’t survive cancer to be scared of her anymore. I’ve vacillated between being livid and being bitter. Eventually, I’ll hit apathy again with this situation just as I have before.

My mom is one of the strongest women I know. The last five years have been nothing but battle after battle and burden after burden for her. The weight she carries everyday would crush me, squash me, pancake me. She wakes up every morning, settles the weight on her shoulders, and marches on. I’m worried sick about her.

My school year started out at 100 mph and hasn’t slowed. I like the fast pace. I like a sense of urgency. I like what I do. I like my classes. I like a new challenge everyday.

But, I’m running out of spoons.

Cancer took one of my colleagues on Monday, a teacher who’s taught at the school since I was a student there, a seemingly healthy, ate well, exercised, did all the right things, woman, a mother, a daughter. I froze up when the email came with the news of her death. I avoided Facebook all day.

The grim reality of cancer is death, and I’m running out of spoons and couldn’t face the reality of cancer on Monday.

I’m really running very low on spoons.

I see Dr. O in a week and a half for my next check up. I’ve gained some weight, I’m not sleeping, I’m falling back into old habits. It’s a self-defeating cycle, yet here I am. I’m in a constant state of low anxiety, and as my appointment day creeps closer, my anxiety builds. It spikes when someone asks me how A is enjoying his new job (a lot), when someone asks me how my dad is doing (it’s day by day), when someone asks me how I’m doing (we don’t have that kind of time). If Dr. O we’re to measure my spoon count, I’m not sure she’d find many.

My spoons are low, so are my spirit and energy. I’m tired, in all sense of the word. I need more spoons. They’re hard to recover, slow to come back.

I need my spoons.

breast cancer, family, life, Uncategorized

Straight to the Feels

I fell down the rabbit hole of cancer articles this afternoon -some feel good, some not-so-feel good. I started out reading an article from an invaluable resource I stumbled upon on Twitter months ago, I Had Cancer. From there, the rabbit hole deepened.

As I read the articles, the blog posts, the personal essays, they were like sucker punches. Straight to the feels.

This has been a rough day. I slept horribly.    My son had an argument with one of his friends and was really upset. My daughter sensed the tension in the house today and took refuge in her room. I’ve been a ticking time bomb of emotion since I fell down the rabbit hole this afternoon.

I still believe this is my fault. I did something wrong. I had a 1 in 220 chance of breast cancer at 37. I had a .4 chance. Yet, here I am. What did I do wrong? Nothing, everything. Cells are innumerable, and all it takes is a clump to go nuts. Some of my cells went nuts and grew a tumor. I have breast cancer thanks to those haywire cells. I couldn’t stop it. I know that, but it happened to me. My body betrayed me.

Betrayals linger and sting, burn and hurt.

August is coming, the 2 year anniversary of my diagnosis. Watching the calendar move closer to those days where I had appointments and tests and biopsies is traumatic. Knowing those days await is traumatic. A breast cancer diagnosis is traumatic. Treatment is traumatic -chemo, radiation, targeted therapies, and immune therapies if needed. Surgery is traumatic. Completing treatment is traumatic. Going for checkups is traumatic. Going for scans is traumatic. Cancer is an assault on the body, the mind, the soul. As I wrote last year, a diagnosis of breast cancer is something that never goes away, no matter the stage. It’s always there, and it’s always traumatic, and it’s more traumatic for some than others. It does not make a person weak, the person who struggles with the diagnosis every single day -a person like me, who searches for the way to make this wrong a right knowing intellectually I did nothing wrong, but the human need to make amends is there, strong sometimes, demanding to be felt.

I have not moved on from being asked why I thought I developed cancer, the unspoken blame. I have not moved on from being told I should be happy about getting new breasts, the insinuation if I were happier, cancer would be easier. Nothing about cancer, any cancer, is easy. I wish people internalized that.

The healthcare battle in Congress over these weeks and weeks has been traumatizing, fearing I could be facing lifetime and annual caps on my insurance, discrimination because of breast cancer. I cried when the three GOP senators voted no. I felt a moment of reprieve.

A moment of reprieve. That’s what I get with the shadow of cancer -moments of reprieve.

I vacillate from happiness to despair, joy to anger, shame to apathy. I liken cancer to a roller coaster, and like a roller coaster, the track is rarely just straight. As I coast towards these cancerversaries, the track twists and climbs, drops and frightens. I am frightened. I want so badly to be fearless, to be the person who’s been diagnosed with cancer and becomes better than they were, stronger than they were, happier than they were.

I wish I were, but I’m not. I still put on a mask most days -I’m ok. I’m fine. No, nothing’s wrong. Most fall for the mask. They’re happy to believe I’m ok. They don’t see the sadness, the fear in my eyes.

I’ve yelled at A today, picked fights with him. I’m moody, scared and sad. I’m struggling today. Everyday is a struggle. Some days are harder than others. Today is a harder day. I had nightmares last night, didn’t sleep well, and it would be easy to blame the nightmares and bad sleep on the way I feel right now; however, the truth is simple -today is just a harder day.

“As far as you know, you’re cancer free right now. Stop worrying about it. You’re so dramatic,” I’ve been told by well-meaning friend. Maybe I am dramatic, but I’m doing the best I can. I’ve had cancer, I’ve faced my mortality, and some days are better than others.

I never feel cancer free. I don’t really believe that’s a thing anymore. It’s always there, lurking. Cancer is my Grim Reaper. Death always lurks around us. We’re mortal. Cancer makes me feel it more acutely.

I’ve been told I have to wake up every day with the mindset to win. I hate that. Cancer isn’t win or lose. It just is. Why do we lose to cancer? I hate that saying. I hate that mindset. Isn’t living that battle? We don’t lose to death. My great-grandmother died at 101. No one said she lost to old age. One of my grandfathers died in his eighties after living for years with Alzheimer’s. No one said he lost to Alzheimer’s. So, why do cancer patients lose? That’s demoralizing. No one facing a life-threatening illness is a loser. We all succumb to something. Why is cancer associated with loss? Death is loss. It just is. It exists, we all face it, we all know we are not promised tomorrow, yet when tomorrow doesn’t happen for a person with cancer, society says that person lost. It’s infuriating.

While I hope with all my being I will not succumb to breast cancer, I know it’s a possibility, and if that possibility comes true, don’t ever say I lost to cancer.

breast cancer, family, kids, life, Uncategorized

Rule of Fear

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I broke down in tears yesterday right before I prepped dinner. I’m pretty good at hiding my tears, or I try to be. I don’t want to worry S or AJ or A. The thing is, though, I’ve been worrying A for weeks. He knows I’m worked up about my upcoming five month check up. He’s not unobservant. It’s his insight, his ability to see the trees and the forest, and his compassion that make him so good at his job and with relationships, which he has to be for his job, too. Building strong, productive relationships is a huge part of his job. It’s not something he takes lightly at work or at home.

He doesn’t tolerate me being down for long. He wants to fix it, to fix me, yet there is no fix.

When he realized I was crying, he followed me into our bedroom, sat down beside me, and asked, “When do you see Dr. O?”

“June 20th at 1:00.”

“So, nine days. You want to be miserable for nine days, there’s nothing I can do about that. It’s your choice. What I can tell you is what I’ve told you for years -when all you do is fret over the future, you steal the joy from now, and you’ll never get now back.”

He’s right. I know he’s right. I’m doing this to myself because I’m scared the cancer is going to come back, and I can’t do a damned thing about it. So, I’ve dug myself into a hole that’s dark, and I’m miserable.

Do I want to be like this for nine days? No. Absolutely not.

The truth is I’m afraid if I let go, I’m inviting the worst to happen. If I stop worrying, I feel like I’m opening myself up to my fears coming true.

A coworker posted an article on Facebook this weekend about the neuroscience of happiness. She’s an RN, and I swear, this article was meant for me to see. It states, “Here’s what brain research says will make you happy:

  • Ask “What am I grateful for?” No answers? Doesn’t matter. Just searching helps.
  • Label those negative emotions. Give it a name and your brain isn’t so bothered by it.
  • Decide. Go for “good enough” instead of “best decision ever made on Earth.”
  • Hugs, hugs, hugs. Don’t text — touch.”

I stopped the gratitude journal I was told to keep by my cancer counselor. That was stupid of me.

When I was a teenager, every single weekday morning, I did a devotional before school began. I found these devotional guides, I can’t even remember what they’re called now, but every page or so was a story or prompt or Bible verse and guided questions. Each ended with a fill-in-the-blank prayer which focused on the lesson. I don’t want a Bible based devotional, though. As I’ve said before, my relationship with God and church is complicated at best. It’s just not as simple as it was when I was a kid. Too much baggage. Too much heartbreak. Too much disappointment.

I do want a meditation journal, though. Something similar to what I had as a teenager with guided lessons and specific targets. I remember how calming and soothing it was to start out each school day with it.

I bought the Sunrise Manifesto a few weeks ago. I haven’t started it, yet, but maybe I will this week. Every lesson begins with a gratitude question. Neuroscience says just searching for gratitude is enough to trigger the right brain response. I’ll give it a go. My current brain response sucks.

As for naming the negative feeling, it’s fear. I’m freaking afraid (not the f word I want to use, but my mom reads my blog and would yell at me, and yes, I’m 39 and still have a healthy fear of my mom).

I’m scared.

I’m terrified.

I once read to help yourself with your fears, look at yourself in the mirror and say the fears out loud. I’ve done that.

I. Have. Cancer.

It’s my reality. I. Have. Cancer. I’ll always have cancer, even if I live to my hundreds and die in my sleep like my great-grandmother who died in her sleep at 101. Remission doesn’t mean cured. It means dormant. Asleep. Undetectable.

I’m scared of the cancer returning, of not being around for S and AJ. I’m scared of the cancer returning, of not being able to work and ruining A’s financial stability. I’m scared of the cancer returning, of dying a slow, painful death.

I’m. Scared.

There. I labeled the negative emotion. Now, I have to decide how I want to spend the days leading to my five month check up. Day-by-day. As my mom tells me, one day at a time. That’s good enough.

S and AJ are full of hugs. It’s the first thing they do after waking up. They come find me and give good morning hugs. That’s good enough.

All of this is literally in my head. The choice are mine. I can let my fear of cancer rule me or I can rule my fear.

It’s ruling me right now. I can either say enough or remain miserable.

It’s so hard to be bigger than my fear, and truthfully?

I don’t know if I can.

breast cancer, family, kids, life, Uncategorized

I need something

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I need something to do, something to take my mind off my upcoming 5-month check up, something to take my mind off cancer, something.

I’ve read two books in the last six days.

I’ve taken my kids swimming four times in the last five days.

I’ve seen two movies with my kids in the last seven days.

My kids have pretty much done everything possible to shove summer vacation into seven days.

My mind keeps whirling.

I haven’t slept well in weeks.

I can’t shake the ten pounds I’ve gained since the oophorectomy.

I overspent our budget. A lot.

Summer is not starting out the best…