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

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, family, life, Uncategorized

The Things I Need to get off my Chest

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Found on Good Morning Quotes. No infringement intended.

These are the things I need to say so they stop swirling around in my head.

Maybe one day I’ll find the courage to let go, truly let go, of what I cannot change. I don’t think this week is that day, though.

Earlier this week, I heard someone say that people with cancer shouldn’t expect to do anything but die from it. It’s a terminal, fatal disease. They should accept their fate.

My mouth dropped. I couldn’t help but exclaiming, “Hey!” because I’m a person with cancer, and I hope, everyday, mine is not terminal. I hope everyday I live long enough to see S and AJ grow up. I hope everyday this becomes a memory instead of a companion.

I see stories everyday of women with breast cancer who had early stage and went Stage 4. I see stories everyday about someone being diagnosed with cancer, someone fighting cancer, someone dying from cancer.

I can’t accept this is my end. If I have to, I guess I will, but right now, I can’t accept that this is how I go…which leads to the next thing I need to get out of my head.

I can’t stop the cancer from returning. If it comes back, it comes back. Yes, there are lifestyle changes I can, and am or have, made. I never smoked. I watched my grandfather die of lung cancer from smoking. I was eight. I swore I would never smoke. So, I don’t. I did drink some, but I don’t anymore. That’s something simple for me to give up, so I gave it up. It’s not like I drank a lot or often. I didn’t. Now, I just don’t. It’s not worth the risk. I eat a little better. I need to work, a lot, on this area, but I do eat better. I still need to lose another thirty pounds on top of the thirty I lost last year. The weight isn’t coming off as easily as it did, but that’s because I don’t exercise the way I should. That’s another change I need to make. I need to exercise. Now that we’re in our new house, I have no excuse. We live on the lake. I love being around water. There’s no excuse for me not to make the trek from our house to the lake and back…except snakes, but even that might not be a bad thing. Sighting a snake would definitely make me start running. I don’t drink nearly the amount of soda I once drank. I drank upwards of 5 Coca Colas a day. Now, on a bad day, I might drink two Dr. Peppers. And, God, how I beat myself up when I slip and drink a soda.

My headgame is both better and worse. The election did a number on my headgame. Whether you agree with me or not, whether you like me saying this or not, I still cannot help but feel my family and friends who voted for the president-elect cast a vote against my life. My struggles over the last year and a half didn’t mean enough to them to think about what a vote for him could do to me. Or, worse, they did think about it and did it anyway. Thanksgiving has the potential to be very uneasy for me. My father in law voted for the president-elect. If politics comes up, I won’t be quiet. I can’t be. I matter. My feelings matter.

I can’t control the cancer, whether it stays gone, whether it comes back, whether it’s already back and I just don’t know it. I can’t control people who say ridiculous things about cancer. And, knowing that, my headgame is better. Saying this, getting this off my chest, like I had my cancerous breast and its guilty-by-association partner breast, helps some.

Writing has always been my outlet, even when it’s not easy, even why it hurts me or someone else. Writing is my outlet. Writing is what I do. Writing heals me. If time can’t heal me, maybe writing can. Maybe writing will.

breast cancer, life, Uncategorized

Cancer made me…

Dr. H removed my port on Friday. People asked me if I was excited or ready to get back to normal. Dr. H asked me if I was tired.

Yup. I’m tired. Cancer made me tired.

What removing my port or finishing Herceptin or having reconstruction has not done is return me to normal. What does that even mean? Normal? No, I’m not ready to get back to normal.

Before cancer, normal meant worrying, all the time, about everything. Cancer made me get that under control because I cannot handle that kind of stress anymore.

Before cancer, normal meant being chronically sleep deprived. Cancer made me admit to my doctor I suffer from insomnia and allow myself to get some help so I can sleep better.

Before cancer, normal meant trying to please everyone all the time and putting myself last. Cancer made me stop trying to please everyone and to put myself first sometimes.

Before cancer, normal meant not taking care of myself. Cancer made me lose weight, learn how to meditate, and find ways to relax.

Before cancer, normal meant being okay with not being okay. Cancer made me come face-to-face with my struggles and find ways to solve them or work on them.

Before cancer, normal meant not speaking my mind because someone might get mad at me. Cancer made me not care if someone doesn’t like my opinion…or me.

I don’t want to go back to normal. I’m a better mother, wife, daughter, friend, teacher because I’m not who I was a year ago. Cancer made me realize how not okay my normal was. Why would I want to go back to that?

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

It’s been a year…

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Found on Pinterest via allwomenstalk. No infringement intended. 

 

The first week of school is over. I made it. There is no tired like the first week of school tired for teachers and students. For fun, my abdominal incision from my DIEP split open slightly in the dead middle of my abdomen. The split is about four inches long. It’s not infected. It is weeping some. I saw Dr. L, my plastic surgeon, on Wednesday. He told me he isn’t concerned, we do standard wound care, and he’ll see me again in three weeks. He did say if it turns red and hot or starts smelling really bad, I should call asap.

That’s lovely.

He also told me where my incision split is the most common place for a DIEP abdominal incision to split because the skin is pulled the tightest there. He said there is a lot of tension in that area, and now, that area is farthest from the blood supply, so this isn’t an uncommon complication. Best case scenario, the split slowly heals on its own. Worst case scenario, I have to have another surgery to stitch it back together.

I guess the fact that 24 inches of the incision healed really well makes up for the 4 inches that are currently being stupid.

I had what I hope is my second to last Herceptin treatment yesterday.

Today is the one year anniversary of being told I have (had?) breast cancer.

A told me yesterday evening that I get to be upset about it for one day, but after that, no more. I told him this has been such a terrible year. He agreed…to an extent. He reminded me of the good things that happened over the last year: I have a job I love where I work with amazing people; S and AJ had a good school year and are off to a great start to this school year; we are blessed to have such a strong and loving support system of friends, family, and coworkers; I’ve lost thirty pounds; I like my hair short, and so does he; I kicked my Coca Cola addiction; I discovered a love for crazy hair and hair colors; I’m still here.

Yes, this year was difficult. Yes, I’ve struggled. A lot. Yes, there are days where I still feel like cancer will get the best of me and will take my life. Yes, I still cry over what’s happened to me and what it’s done to my family. Yes, I still wonder what I did to have cancer happen to me at 37. Yes, I still have one-sided rants at God. Yes, I hug my children a little tighter and say yes to more things than I should (Pokemon hunting…Legos…late night Uno…take out dinners). Yes, I still have nightmares (fewer and farther between).

As hard as this year has been, I’ve learned some things about myself, though, too. I’ve learned to ask for help. I’ve learned to admit when I can’t do something. I’ve learned it’s ok to admit when I’m overwhelmed. I’ve learned it’s ok to cry on a friend’s shoulder when I need to cry. I’ve learned it’s ok to take time for me. I’ve learned I can face my worst fear. I may not always face it head on, I may let it break me sometimes, but I put the pieces back together and face the next day.

I don’t want to be weak. I’ve allowed cancer to steal so much from me…my joy, my smile, my balance, my happy, my peace. It’s been a struggle to find those again, and to be honest, I haven’t found them in any sort of consistent manner. Last night, A told me he needs me to find my smile again. He told me he misses my smile, my happy. I need to find my smile, my happy, my joy, my peace again.

So, I’ll work on finding my smile, my joy, my happy, my peace. And, I’ll work on remembering, I’m still here…I’m still me. I’m  just changed by the obstacles put in front of me since August 27, 2015.

breast cancer, life, Uncategorized

Shrinking

At the end of last school year, I weighed the most I’d ever weighed. I was angry and embarrassed by how much I’d let myself go, and I knew I needed to make some changes. I needed to stop drinking the number of Cokes I drank, and I needed to walk more. I didn’t have the willpower, though. I kept thinking it was too hard. I liked Coca Cola and hated exercise. As June rolled around, though, I told myself I would lose weight over the summer. No more weighing in at 212 pounds. It’s so embarrassing to type that, but it is what it is, and that’s what I weighed in June.

I suck at keeping weight loss goals, but by the end of June, I had lost five pounds. I’d also made the decision to go back into the classroom, and I’d begun to get an uneasy feeling anytime I thought about the hard knot I could feel in my left breast. Stress helped me drop another five pounds in July. August is when the real weight loss began. Moving into and organizing a new classroom, walking around a school built to accommodate up to 2800 students, and stress from a breast cancer diagnosis helped me drop another 10 pounds.

The first time I saw Dr. O, she told me I needed to lose some  weight, and I definitely needed to lose my Coca Cola habit. Chemo helped me kick Coca Cola to the curb. After chemo, when the terrible taste in my mouth reared its head, Coca Cola tasted terrible. I couldn’t drink it. I replaced it with what I should have been drinking all along: water. I went from drinking four and five Cokes a day to none. I went from drinking maybe one glass of water a day to 52-90 fl oz a day. I quit Coca Cola cold turkey. And, when I did, the weight fell off. The funny thing, though, is I don’t realize how much weight I’ve lost. Sure, I know what the number on the scale says. This morning, it said 178. I haven’t weighed 178 in ten years. That’s what I weighed when I became pregnant with S.

I grabbed the wrong jeans yesterday. In June, these jeans fit me and were almost too snug. Yesterday, they fell off me.

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It’s shocking for me to see just how much weight I’ve lost. I know I’m not thin, certainly not like I once was, but I’m not embarrassed by what I look like anymore. Heck, I’m not embarrassed to be bald. When I have on my make up, I actually like the way I look without hair. No one is more surprised by that than me.

Cancer has taken many things from me, but the one thing it stole that I’m really glad it took is my addiction to Coca Cola. I don’t miss it. Not a tiny little bit. And, I’m healthier now because I’m not even tempted by it, which amuses me to no end. Cancer has made me healthier. There’s some irony.

My weight loss goal once seemed impossible, but now it doesn’t. Dr. O wants me to lose another 20-30 pounds. I’d like to get back to 150…maybe 140. That’s what I weighed when A and I married. Six months ago, that seemed impossible. Now, it doesn’t.