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…

breast cancer, life, Uncategorized

Why it’s absolutely okay to be selfish (sometimes)

I’ve barely moved from my bed since coming home from surgery on Monday. In fact, last night, I fell asleep at 8 pm, woke briefly at 9 am this morning when A told me he and the kids were leaving for the zoo, and woke for the day around 1:30 pm.

Lazy. Sloth. Selfish.

But, hey, I did get out of bed and cook dinner…a garlicky, creamy, bacon pasta carbonara.

Then, I went right back to bed.

The pain is less. The head cold, allergy, respiratory thing I’ve had for a week now is less. My scumbag brain is…well, still a scumbag, but I’m taking great pleasure in telling it to pick-a-four-letter-word off.

Dr. He called yesterday afternoon to check on me and to give me the pathology results of my ovaries and tubes. Everything came back normal. So, at this point, I’ve done everything I can physically do to give myself the best chance of keeping the cancer from returning with two exceptions: losing thirty more pounds and stopping my one or two Dr. Pepper a day habit I’ve recently picked back up.

I wish this wasn’t something for me, or anyone, really, to worry about, the shadow of cancer. Yet, it is. Forty thousand people (give or take) will die in 2017 from metastatic breast cancer. No one dies from breast cancer that stays in the breast. It’s when it spreads that breast cancer becomes terminal. That’s the shadow. 30% of cases detected early will progress to Stage 4…metastatic disease. No cure.

After seeing 45’s budget proposal today, the steep cuts to arts, science, public welfare, health, I wonder if we will ever truly see a cure, a treatment to stop cancer, to stop breast cancer. What will happen to the cancer moonshot? I look at my friends and family who voted for this mess with the words “I told you so” on the tip of my tongue, but it does no good to point out the harm in 45’s healthcare proposal or this budget. The second I post anything politically motivated, some of my friends and family stop reading…stop reading my Facebook, my a Twitter, my blog, this post. Then, they’re irritated with me.

It bothered me a lot…once upon a time, their irritation and disappointment. It still bothers me because they choose to stick their heads in the sand, to say, “oh, it’ll all be ok.” But, see, I’m selfish. I want to live. I want to advocate against things like the healthcare bill and the budget. I put my money where my mouth is and donate to the ACLU and to local non-profit hospitals. I call my senators and representatives. I’ll attend my first town hall this Saturday (hopefully I’ll get in since RSVP’ing doesn’t actually guarantee you a space). I’ve responded to surveys. Just like with my health where I’m doing just about everything I can to maybe see 40, to maybe see my daughter go to high school, to maybe see my son go to middle school, I’m doing what I can do to advocate for myself even though people I love completely disagree with me, talk about me behind my back, call me selfish.

It’s okay to be selfish. I’ve had five surgeries in less than one year, 28 hellish rounds of radiation, 6 rounds of chemo, 6 rounds of Perjeta, 18 rounds of Herceptin. I’ve lost my breasts, my ovaries, my Fallopian tubes, and at times, my dignity, my strength, my hope. I am scarred, and it’s ok. Those scars remind me what I’ve been through, what I’m still going through, and hopefully, that I’ll survive. Sometimes, the only way to make it through this walk with cancer is to be selfish of my time, my energy, my thoughts, my self.

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And, sometimes, that’s okay.

breast cancer, family, life, Uncategorized

Not as planned

I slept for about an hour Sunday night. I watched my clock lurch closer and closer to 5:15 am, Monday morning, when A and I would need to get up and dress. When I got home yesterday afternoon, I slept for hours. Consequently, I barely slept Monday night.

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From someecards…no infringement intended

I thought having my ovaries and tubes removed would be a cake walk compared to being sliced from hip bone to hip bone as I was over the summer for my DIEP reconstruction. I was wrong. I’m so sore, especially on my left side where Monday’s surgery placed a larger incision than that on my right. Also, since the incisions go through abdominal muscle, doing anything besides staying in bed hurts.

Sunday night, I posted a Dear Cancer on ihadcancer. In turn, ihadcancer posted my Dear Cancer on Twitter.

I am really tired of surgeries. I’m tired of cancer. I want this to be done, to be the last surgery, for the cancer to stay away.

To top off today, I shattered one of my back molars when I hit down on a chip at lunch. That moment turned into the straw that broke the camel’s back for me. I’m absolutely terrified of dentists, so when it shattered, I cried. It doesn’t hurt at all. Still, it’s not something else I wanted to deal with right now. So, like Scarlett, I’m choosing to deal with it tomorrow…whenever that tomorrow might be. It won’t be this week, though, if I can avoid it.

I told A that I’m embarrassed by me. Chemo wrecked some of my teeth. This molar won’t be the last tooth to give me trouble. I have more scars now than I can count on two hands. Most of them are located from my neck to my waist. I have nerve damage from surgeries. I have chemo brain. My eyebrows came back thin and sparse. The one thing I actually like is how my hair came back…same color, but it’s thicker than before and a little less fine. I’m wearing it in a pixie cut that I really like. Otherwise, I feel a mess.

It feels like I’m at another fork in the road, a curve on the cancer coaster. I don’t know what waits ahead, what lurks. Once again, I have no control.

I don’t like feeling powerless. I thrive in routines. My mom will tell you I’m particular and don’t react to change well. She’s not wrong. I didn’t react well to change as a kid, and I don’t as an adult. I like the security of the known, and with cancer, there is no known…not really.

 

breast cancer, family, life, Uncategorized

Medical Waste

My ovaries and Fallopian tubes joined my breasts this morning as medical waste.

That’s a fun sentence to write.

Not.

Surgery started at 7:45. I was in the recovery room by 9:10. I was home by 10:50. For once, I woke up from anesthesia without nausea. Dr. He told me everything looked good, no visual oddities, and he’ll see me in two weeks. Hopefully, he’s right. Everything is sent to pathology no matter what. I’ll call Dr. O tomorrow to let her office know the surgery is done and see what the next treatment step is. It should be cancelling the Lupron shot in April. It might be switching to Armidex from Tamoxifen immediately. I really don’t know.

I’m on bedrest today and most of tomorrow. I guess that’s ok. It’ll give me time to read since I’m rereading the Harry Potter series, and it’ll give me time to play on Pinterest.

This is the one surgery I’ve been completely ambivalent about having, but today, when I had to sign two documents acknowledging I understood this procedure would result in total, irreversible infertility, I paused.

No, A and I were not going to have another child. Too dangerous even if I had any fertility left after chemo, but there was something about being forced to put in writing that door would close to never open again.

We once said we wanted three children, and if I hadn’t miscarried in 2004, we would have had three children. We’d have a 13 year old now along with 11 year old S and 8 year old AJ. I’m never really sad over the miscarriage because I know it wasn’t meant to be, but sometimes, there’s a what-if that floats through my mind.

Cancer took away that what-if. Cancer took away so many of my what-ifs.

My great-grandmothers all lived well into their nineties, one into her hundreds.

My mother and her sisters are in their sixties and seventies.

My sister is nearly fifty.

My older cousins are in their mid forties and fifties.

A turned 37 last Friday.

It seems to me I’m the one destined to live a short life…”the sharp knife of a short life.” No more what-ifs about living to old age.

Cancer reminds me daily how fragile life truly is, how mortal we truly are, even as we fight against mortality, against growing old. What a paradox. We want to grow old because that means we’ve lived a long life, yet if we live into advanced ages, we do anything we can to avoid being seen as that age. Anti-aging creams, vitamins, surgeries all because we’re seventy and want to look fifty and because we’re fifty, we want to look forty and because we’re forty and where did that line come from, how can I look like I’m twenty?

Last year, when I had my bilateral mastectomy, I struggled so hard when I woke up in recovery and found tissue expanders instead of reconstruction. Suddenly, I had absolute, inarguable, physical proof of cancer, more physical than the port. The mastectomy cut away the cancerous parts of my body. Two parts of my body became medical waste because the left one tried to kill me. Today, I lost four more organs that are uniquely female. Four more pieces of my 39 year old body became medical waste because my left breast tried to kill me. I’m numb to it right now (but not physically numb because this discomforting ache can go away).

As of today, with the exception of losing weight, I’ve now done everything I can do to keep the cancer at bay. I had six months of taxotere, carboplatin, herceptin, and perjeta. I had another six months of just herceptin as a year of herceptin is the gold standard for HER2+ cancer. I had a bilateral mastectomy. I had auxiliary lymph node dissection of the left nodes. I began tamoxifen when the mastectomy and ALND revealed ER+ cancer and will, hopefully, be on it or Armidex for 9 more years. I had radiation. I had a bilateral salpingo-oophorectomy.

Cancer is carnage. Cancer is waste. My fate is truly, deeply out of my hands at this point, not that it ever was in my hands in the first place.

We wait. We watch. We see. There’s nothing else to be done.

breast cancer, life, Uncategorized

Weighty

Sometimes, I feel like cancer is a huge anvil chain-wrapped around my neck. I drag it behind me, a slow and steady trudge. I bump people I love with it, and if I don’t watch carefully, I’ll flatten them with it.

Tonight is one of those nights.

I’m snippy, bitchy, if you want the truth, because I don’t want to have surgery tomorrow. I don’t want A spending the first day of Spring Break getting up early to take me to a hospital and sitting for a few hours, waiting for me to be done, only to come home and have to help and wait on me more. He’s rewatching The West Wing and on Season 6 right after President Bartlet’s MS flare up. Yesterday, he watched the episode where the president admits to his wife, Abbey, he can’t put his pants on and needs her help. As she helps him, he says something along the lines of things like that are the reason we vow in sickness and in health.

I’m tired of being the in sickness part of A’s vows.

I know my surgery tomorrow is minor. I’m likely to be home by noon. After tomorrow, I’ll be breastless, ovary-less, and fallopian tubes-less.

My mom wonders why I’ve become a sudden lover of tattoos. It’s my way of choosing the scars carved into my skin. A Phoenix here, an areola there and there, a bouquet of flowers beside them, a dream of a delicate collection of lacework, a symbol on strength somewhere, and a wise owl standing on a stack of books with spines that read “Nevertheless, she persisted” because McConnell’s rebuke to Senator Warren has so many implications.

There are nights when the anvil of cancer becomes heavy, becomes a bigger burden than it already is. My friends are spending Spring Break on vacations. I am spending Spring Break having an oophorectomy. A minor procedure, but hopefully, the last major surgery of my breast cancer hellscape.

I’m considering having a Harry Potter style wand tattooed on my stomach pointing at my scar with the “Reparo” spell whooshing out at it. It’s my way of making light what’s happened to me.

A friend told me the same adage those with tattoos often hear, “Think of what that’s going to look like when you’re older…when you’re old and wrinkled.”

Friend, if I live long enough to be old and wrinkled, I’ll smooth my skin out and show my tattoos to my grandchildren, telling them, “Grandma got this one when she finished her year of breast cancer treatment and this one after another surgery she needed and this one because she needed a reminder and this one because…”

These are my scars to bear, my weight to bear. Let me cope however I can. I hope you never stand in shoes like mine, but if you do, here’s the best piece of advice a fellow cancer recoverer told me, a wise beyond her years twenty something, who battled cancer her senior year of high school, “Do what you need to do to get through and be damned what anyone else tells you. If the cancer comes back, you didn’t do something wrong. If the cancer doesn’t come back, it’s not because you got lucky. Cancer is a bitch. Sometimes, she takes her beating and goes away. Sometimes, she takes her beating and comes back. Whatever happens, you were there for me when I dealt with my cancer, I’m here for you while you deal with yours. No judgements. Ever. No one gets it unless they’ve been there.”

People like her, like A, like my family, sometimes take my breath away with their clarity. I see myself as a weight, a burden they must bear, but I’m not. They choose to bear my burden with me, even on nights like this when the burden is heavy, when I’m prickly, when I’m lashing out as a coping mechanism. They understand it’s me dealing with a swirl of emotions I’m not equipped to handle. Who really is? Who really is equipped to handle the glimpses of mortality, of knowing your cells, the very life of your body, wants to kill you? I may have made peace with my lot, but the weight of the lot is there, dragging behind me.

breast cancer, life, Uncategorized

More tattoos

Maybe.

My plastic surgeon has a tattoo artist on staff who does tattooing for his breast reconstruction patients, and my appointment is this coming Wednesday. Dr. L’s assistant set it up for me almost two months ago, and I completely, 100% forgot until yesterday when the tattoo artist called to ask me some questions about my scars.

Dr. L talked me into basic tattooing and nipple reconstruction when I saw him in January. I came home and brooded for awhile over it because he recommended nipple reconstruction as well as a fat transfer to suck out the fat necrosis and replace it with fat from my hips, and he recommended lifting the right foob to match the left.

At the time, my reaction was, “Yeah…ok…whatever.”

Then, I actually thought about everything, and man…I don’t want to do it. I don’t care about nipple reconstruction. I’m reconciled to the shape and location of the foobs. My scars have thinned and lightened. I don’t want more surgery on this. So, I talked to A, and by talked, I mean I was a crying mess of frustration, and his response was typical, amazing, A, “If you’re having these surgeries for yourself, do them. If you’re having them for me or because you think you have to, stop. You’re alive. That’s all I care about. I do not care what is or is not on your chest. You are, and always have been and will be, more than what you’ve lost.” Yes, he really is amazing. Yes, I know how insanely blessed I am to have him. He’s mine…until death we part.

So, when the tattoo artist called to talk to me about pigmentation in preparation for nipple reconstruction, I blurted out I don’t want that, and I want 3D tattoos and if that was a problem, I’d find somewhere to have it done because I’m not having more surgeries unless I have to do so. The artist just breezed on and said that was fine, she does 3D, and she’d update my record and for me to plan to be with her for awhile on Wednesday afternoon.

I’ve agonized over this for weeks. It felt good to make a decision based on my wants. Now, I just hope the tattoos look ok because I’ve gotten used to the circular scars. If they’re replaced with something that doesn’t look good, I’m going to flip my lid.

breast cancer, family, kids, life, Uncategorized

Surgery annoys me

I’d rather have a root canal than schedule my next surgery, but since the thought of going to the dentist is enough to reduce me to a pitiful mass of crying goo, I put on my adult hat and called today to schedule my next surgery…I chose a date during Spring Break. Why?

First, I can’t afford any days off without pay, and I’m dangerously close to being out of days again because cancer sucks…because the flu sucks…because I have kids and sometimes, they get sick, too. At the beginning of last school year, I had 24 days saved up, but cancer happened, I needed a bilateral mastectomy, and there went all my days and some I didn’t have. Thankfully, I have short term disability, and it made up for the days that were docked. This year, like all employees of my district, I received seven days of paid leave. Some people, like my mom, have so many days saved up, it’s mind boggling. Others, like me, manage to save up some and then have to use them all and start saving all over. My goal was to start out the 2017-2018 school year with 10 days (three from this year and seven for next). Thanks to the freaking flu, if neither myself nor my kids get sick for the rest of the year, I’ll start out next year with nine.

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From someecards…no infringement intended

Second, since I have no freaking idea what’s going to happen to my health protections, I know I need to have this surgery done ASAP. As the Washington Post detailed in its recent article “Cancer patients, survivors fear GOP efforts to dismantle the Affordable Care Act,” I can’t afford to wait because the longer I wait, the scarier it could get. If lifetime and annual limits return, I’m dead. If the rules prohibiting insurers from dropping someone because they get sick and need to use their health insurance, which is why health insurance exists, contrary to those who think it exists to make them rich, I’m dead. If the pre-existing condition protection goes away, I’m dead. If my cancer returns, and the choice is bankrupting my family or dying, I’d like to live, but I’m not going to bankrupt my family. So. I’ll choose them over me every single time. That’s my reality. My husband is a good man who does not deserve to see everything we’ve worked so hard for together be destroyed because of cancer. My children don’t deserve to lose their stability because of cancer. I know beyond a shadow of a doubt if I were to die tomorrow, A would move heaven and Earth to protect, shelter, and comfort S and AJ. While they also deserve their mother, if cancer returns, if the Republicans get their way now that they’ve caught the car, if I lose my protections from predatory insurance practices, if I lose my protection from annual and lifetime limits, I choose my husband and children over me.

So, in two weeks, I’ll have my ovaries removed. What’s a couple of more body parts? Dr. O told me this surgery could be my last required one since chemo and Lupron surpresses ovarian function. Well, it’s been a year since the mastectomy. It’s been six months since the DIEP. In the timeline of breast cancer crap, with an ER+ cancer, it’s time for the ovaries to join my breasts as medical waste.

breast cancer, family, kids, life, teaching, Uncategorized

*knock, knock*

I’m still here. I would just make an excuse and say I’ve been busy, but truthfully, we’ve hit another series of cancerversaries that are hard, so I’ve kind of avoided my blog, which is crazy since writing is what helped me so much this time last year. So, let’s start with January 30, 2017.

I saw Dr. O for my first 20 week check up since finishing Herceptin in September. A went with me. Waiting for her was eerie. It was a long wait, just like it was last year when I saw her for the first time after my mastectomy (and that’s the appointment where we found out I had ER+ cancer, which was one year ago…TODAY). Thankfully, this appointment was not like that one. She came in and was VERY pleased with my blood work and exam. She noted the two huge areas of fat necrosis but felt nothing alarming. My blood work, for the first time since October 2015, was normal. My liver numbers that caused so much concern during treatment finally, finally are totally normal, and my red blood cells, my hemoglobin, and my hemocrit numbers were all finally normal. No more iron. Yay!

A asked her what my long term prognosis is, for real, knowing the cancer had spread to my lymph nodes. Dr. O said she’s cautiously optimistic. I’ll take that. I asked her if she’s still recommending an oophorectomy…she is.

I’m so ambivalent about it. I’m on Lupron. I don’t want to have ANOTHER surgery (I’m whining…I know). She did say if I want to delay it until Spring Break or even summer break, that’s not a deal breaker to her. The little voice inside my scumbag brain, though, whispers to me that if I delay it and the cancer returns, it’ll be my fault for delaying the oophorectomy. I’m going to call my new OBGYN on Monday and set it up. Besides, since who knows what’s going to happen with my protections under the ACA, I may as well do it before it’s decided since I got cancer, I don’t deserve health insurance.

So, my 20 weeks check up went well. That’s a relief. I don’t see Dr. O again until June for my next 20 week check up. Hopefully, we continue 20 weeks check ups for a looooonnnngggggg time. She said she wouldn’t release me to 6 or 9 month check ups until I’ve been no evidence of disease for 3 years. I hope I make it to that mark.

A week after seeing Dr. O, and after having a flu shot in early January, I got slapped with the worst case of the flu I’ve ever had.  By the time I got to my GP, less than 2 days after I spiked a fever, not only did I have the flu, but my right lung showed signs of pneumonia on X-ray. My first question was “Are you sure it’s pneumonia and not a lung met?” My GP looked at me with pity and just said, “Yeah. I’m sure. It’s not your cancer. It’s your flu.” So, home I went with three prescriptions and orders to call if I worsened. Thankfully, the medicine did its job and knocked it out, but it’s taken me until really this weekend to truly feel better. I’m not coughing anymore. I hope I never have the flu that badly ever again.

Work has been a mix of amazing and awful since second semester started. My school has had 2 staff members die, one on campus just this last week, and 2 take medical retirement since this semester started. It’s been a rough month and a half.

I feel like that should be my tag line…”It’s been a rough month and a half.” It works for all occasions!

My birthday is this week on Wednesday. I’ll be 39. Last year, I wondered if I’d be alive, and healthy, when 39 rolled around, so a huge part of me is so grateful I’m still here, I can’t put it into words. I’ve had another year with A, S, and AJ, and the rest of our family.

That’s the icing on the cake and the best gift I can get.

breast cancer, family, kids, life, Uncategorized

A day of frustrations

I barely slept last night. I couldn’t get comfortable. Our new kitten decided he needed to sleep on me. It was cold in our room. It was hot in our room. I heard a noise. The cats decided to run through the entire house at top speed.

I scrolled through Twitter and saw all the Tweets of what the new Congress plans on doing to the country. I felt the tension building, again, in my shoulders and in my head.

I went to see my plastic surgeon for the third time in three days, and for the third time in three days, I was forced to reschedule my appointment. Yes, really. I had an appointment for Monday, the 2nd. I had a confirmation call about the appointment. I went to his office on Monday. Office closed for the holidays. So, I started thinking I’d put it in my phone for the wrong day. Stupid me. Yesterday, I went to his office at the same time I’d gone on Monday after arranging for someone to take part of my 2nd period class. I got to the office, and the receptionist told me I didn’t have an appointment scheduled. I told her about Monday. She looked at the schedule, and gee, I was scheduled for an appointment on Monday…when they were closed. Their fault. We’re sorry. She rescheduled it for today at the same time. So, I arranged for someone to watch my 2nd period again and went. I sat in an exam room, in a gown, for 45 minutes. I listened to my doctor go into all the rooms around me. My appointment was at 10:05. At 10:55, I dressed and walked out of the exam room in tears. His medical assistant looked startled. I told her I couldn’t wait anymore because I had committed to covering part of another teacher’s class starting at 11:15. She told me she could have him in to see me in five minutes. Five minutes is not enough time for me to discuss what to do about the fat necrosis that still freaks me out. Five minutes is not enough time for me to discuss what to do about the fact the right foob is a full cup size bigger than the left. Five minutes is not enough time with my doctor. Five minutes is all I would have before I truly had to leave if he actually made it in my room within five minutes. She apologized and sent me to be rescheduled.

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I was so angry, I was in tears. The scheduler rescheduled me. Again. For the third time in three days. The new appointment is two weeks out.

I’m an angry crier. I cried as soon as I got into my car. I yelled at the Staples delivery driver who had almost blocked my car in when he made an annoyed face as I tried to back my car out of the space. I called A and cried. I got back into my empty classroom and told a coworker what had happened. She told me to text her the next time something like that happens and she would figure out how to help me. She told me my health and my family matter more, no matter how much I love my school. After she left, I put my head down on my desk for the two minutes I had between talking to her and covering the other class. I spent two minutes with my eyes closed trying to calm myself. Then, I went and covered. I won’t say no to covering someone, not after all the covering that was done for me last year so I could go to a doctor’s appointment or go to chemo or go do a burn treatment thanks to radiation. My principal covered my duty for me at times last year so I could go in the clinic and do a burn treatment, so no, I’m not going to say no to someone who needs help here at work if I can help. Sometimes, I believe strongly in the idea of paying it forward. Covering classes is how I pay forward what people did for me last year.

After I covered the part of her class she needed me to cover, I went out to my car. It’s cold here in Dallas. Arctic front and a chance of snow. Yaaaaaassssss. I love the cold, and I love watching my children experience snow. I hope it actually snows. My luck, though, it won’t simply because I want it to snow (“That’s not how weather works, L!” you might say, but it seems like that’s how my luck works). I wanted to be out in the cold, to enjoy it, to just be for a few minutes. And, stupidly, I got on social media. And, I saw more of the political circus revolving around the ACA. I went to my Rep’s website and found a link called “Your Obamacare Story,” and stupidly thought it was a good thing. Then, I saw how it only wanted negative stories. It was the straw that broke the camel’s back for me, and for the second time in less than I month, I found myself on the phone with an elected official’s office relating to the intern who answered the phone my story.

Not all Obamacare stories are negative, and <Congressional Official> needs to know there are stories like mine where the ACA made sure I had a chance to survive. It’s not perfect. It can be made better, and yes, my insurance premiums have gone up, and my out of pocket expenses have gone up, but you know what? I don’t blame Obamacare. I blame the insurance companies. I blame the drug companies. I blame them because they’re finally required to do their jobs. Let me tell you my story and why I happily pay for my insurance. I’m grateful to still have it.

I’ve worked since I graduated from college in the same job. I’ve paid my own health insurance for seventeen years. I never thought I would need it for anything except if I had kids. I never thought breast cancer would happen to me and certainly, not at 37. Yet, at 37, with no family history and no reason from genetic testing, there I was…with breast cancer. My treatments cost well over one hundred thousand dollars, but I could have them because my insurance company couldn’t drop me, couldn’t enforce annual limits, couldn’t enforce lifetime maximum limits. I’m alive because of my oncologist, who I could see because of my health insurance. I don’t rely on the ACA for coverage. I rely on the ACA for protection. The ASCO publishes a report about cancer care in America, and it talks about how the ACA has helped those of with cancer because of the reasons I listed.

I am a wife. I am a mother. I have two children. I love my husband and my children very much. I want to be able to live as long as I can to maybe see my 11 year old daughter and 8 year old son grow up.

I’m a teacher. I work hard everyday to give back to my community, the community I was raised in, that my parents were raised in, that I raise my children in, because it’s important to me I do something to contribute to my community. My story is not unique, but I’m tired of feeling voiceless, of feeling powerless. You need to know there are people, many people, like me, who without the ACA will find ourselves in danger of losing our HEALTH insurance because we got sick and needed our HEALTH insurance, which is the point of HEALTH insurance. So, please, make sure <Congressional Official> knows there are stories like mine. My story matters. My life matters. My voice matters, and I’m tired of not having a voice.

The intern listened, asked questions, made comments that made me feel like he was actually listening. Then, he asked my name and for my contact information. He told me he would see to it my information and the notes he took were passed along to my representative. Maybe he will. Maybe he won’t. But, I’m not going to stop calling my elected officials. You cannot leave those of us with catastrophic illnesses with no safety net. Well, you can, and the GOP is trying, but the question is one of mortality and community, and if you stand on a conservative platform and claim it’s moral to take away access to healthcare from millions, I have to question your sincerity. That’s why I questioned, and still question, my friends and family who voted for Trump, why they voted against my life. How can you say you love me or care about me knowing the outcome would be what I see on social media every day now? One of my family members told me he really didn’t think this would happen. I had to turn and walk away.

Maybe I’m not going about this in the way I should, but my blog and my phone are the only ways I can get my voice heard. I want my elected officials to know there are many, many people like me. I want my elected officials to know taking away access to healthcare for millions with no true plan to replace the ACA is wrong. I want my elected officials to know I exist. I have a voice.

I don’t want to worry every single day that if today is the day my cancer comes back, today could also be the day my insurance company tells me, “Bye Felecia!” and sends me a letter with some bogus reason the company has come up with to drop me from coverage because cancer. I don’t want to worry every single day that if today is the day my cancer comes back, today could be the day my doctor tells me I can’t have a treatment or a surgery because insurance won’t cover it.

I know people who think my life is expendable because I developed cancer. I know people who think it’s my fault I developed cancer. So, I know why people think it’s okay for the GOP to do what they’re proposing.

Since 2017 began, these have been the prevailing thoughts circling in my mind, that keep me up at night (besides the cats), that scare me to my core.

It’s been a long, frustrating day.

breast cancer, life, Uncategorized

What’s on your mind?

When you post a status, Facebook’s text says, “What’s on your mind?” So, here’s what’s on my mind-I don’t like myself a whole lot right now, and I don’t like a lot of things right now.

I woke up on New Year’s Day and was hit on social media by all the posts of plans for repealing the ACA and Trump’s ridiculous New Year’s Day Tweet. I slept terribly, and sadly, that’s true for me for pretty much my entire winter vacation.

See, here’s my problem-I don’t feel hopeful about 2017, not when politically, the party of life is ripping away healthcare from upwards of 20 million people, when my own health insurance protections are now at risk. I’m powerless, just like I was when I found out I had breast cancer, like I’ll be if the cancer comes back. I’m powerless. I don’t want to be powerless, but I am. I can’t stop any of this political mess. I can’t stop my cancer from coming back if it decides to come back. I. Can’t. I can’t get my voice to matter.

And, in the TMI department, I’m not happy with my reconstruction anymore. Everything has settled into place. One foob (fake boob made from a flap for those who can’t figure out the portmanteau) is a full cup size bigger than the other. It also dropped down more than the other. So, it’s pretty lopsided, and I don’t like it. I know I need to talk to my plastic surgeon about it, and, I will at my appointment tomorrow after two rescheduled appointments with him. I don’t like the fat necrosis that’s visible on the foob that’s larger. I don’t like any of it right now.

I hate this. I hate all of this. I wish I’d come out of this cancer crap a better person, a happier, stronger, more gracious and more content person, but I didn’t. Just one more failing of mine, I guess.

So, what’s on my mind? I’m powerless. I’m insignificant. I hate cancer and what it’s done to me. That’s what’s on my mind.