breast cancer, life, Uncategorized

Countdown: A Rant and A Plea

Unless something drastic happens, my DIEP reconstruction is scheduled for noon tomorrow. I spent Monday with my kids and my mom school supply shopping. I spent today with my kids at the waterpark.

It’s the last time I can take them to the waterpark this summer.

Thanks cancer.

Truth be told, we had a wonderful time at the waterpark. My kids and I love to swim, and there’s so much for them to do there. I wish with all my heart today wasn’t the last day I’ll be able to go swimming with them for awhile.

I’m still not looking forward, at all, to surgery. Reconstruction surgery is nothing like breast augmentation. It’s just not. What I’m having done is so much more complicated and complex. And, when I wake up tomorrow night, I still won’t look normal, or the stereotypical idea of normal. Yes, I know…I’m more than my breasts. I believe that. But, this isn’t want I signed up for. And, deep down, I’m afraid there could be shadows lurking in the corners to be exposed during surgery tomorrow. It’s hard for me to know I’m heading in for the same surgery I would have had back in February if things hadn’t gone wrong then. If the cancer hadn’t been found in my lymph nodes. If the cancer hadn’t needed radiation treatment. I’m scared I’m going to wake up tomorrow night to A telling me something went wrong and well-meaning people telling me to look at the bright side, just like what happened in February.

I’ve spent the day doing everything I can to keep my brain from being a scumbag. I’m hoping to go see Star Trek Beyond tonight if my mom will come stay with the kids for a few hours since A has to work late tonight. I might even go by myself. I figure that’s another good way to keep my brain from being scumbag-tastic. Then, when I get home, I’m taking something to help me sleep and going to bed.

I’m supposed to be at the hospital by 10 am tomorrow. I won’t be sad to see the expanders go. They’re uncomfortable. But, I am afraid of what the next iteration of my fake breasts will be.

I’m so ready to put this behind me…as much as I can anyway. I know it’ll never be completely behind me. The reminders are inescapable. The scars. The medicine. The appointments. The tests.

A friend texted me last night and shared her mantra with me: “You don’t have to be brave, you just have to show up.”  imageSo, I’ll show up on Wednesday. I have no intention of being brave. I’m just there to get rid of the expanders, hope my reconstruction goes well, and I wake up with another hurdle jumped.

Don’t expect me to be excited or happy or brave or really anything. I’m just showing up. I’m not excited. I’m not happy. I don’t want to pretend. I don’t want to have to fake it so that I don’t make others feel bad. I’m sorry-not-sorry if my less than rah-rah happy-happy attitude bothers you. In this equation, the problem is not me. The problem is how you expect me to be and your annoyance that I’m not the way you want me to be. Again, I’m not the problem in this equation. I get to feel how I feel about the fact I have breast cancer and have needed hugely complicated, complex, and invasive surgeries. I’m not happy to get new breasts, as people have asked me. This surgery is NOT breast augmentation. On Facebook, a couple of friends shot me messages today asking exactly what this surgery entails, so I’m going to explain it as best I can.

The DIEP flap takes all the skin and fat layer from hipbone to hipbone up to a semi-circle around my belly button, along with its blood supply, the deep inferior epigastric perforators (DIEP), are taken from the abdomen and used to reconstruct the breasts. I have a very good, very skilled plastic surgeon, which is good because this surgery cannot be done by just any plastic surgeon. It is micro-vascular surgery. If the blood supply is not connected correctly, the flaps will die, I will have to have more surgery, and at that point, my only option for reconstruction is an implant based reconstruction, which I am not an ideal candidate for thanks to radiation. The surgery takes 6-8 hours to perform. Afterwards, the blood flow to the flaps must be monitored every hour for 24 hours, so that means I get to stay in ICU for at least 24 hours. Provided all goes well for those 24 hours, I’ll be moved to a regular room after that and will stay at the hospital another 2-3 days for monitoring. I’m hoping to be released on Sunday. While I’m in the hospital, I will have six surgical drains to deal with, and I’ll supposedly come home with two. My plastic surgeon said he expects to remove four of them before I leave, and I hope he’s right because if I have to deal with six drains, someone better be prepared to meet the other side of my personality. Drains are a level of hell Dante didn’t know existed.

The expected recovery time is 6-8 weeks. I’m going to try to go back to work on August 11. Yes, you can laugh now.

A, bless his heart (and I mean that in the Southern way), keeps “reminding” me how quickly I healed from my c-sections, and really, the abdominal part of this surgery is a c-section on steroids. So, in his mind, I’m going to bounce back quickly, and we go back to life as usual. When this topic comes up in conversation, I just stay quiet. He needs to believe I’m going to bounce back and all will be well. He needs to believe this cancer coaster is coming to a flat area of track. He needs to believe I’m healthy. He needs to believe the cancer is gone.

I wish I were him. He’s so optimistic, and I’ve never, even on my best day, been a shining example of optimism. I hope he’s right.

I’m so annoyed by this surgery. I’m so annoyed breast cancer is part of my life. I’m so, so, so annoyed by it today. I’ve spent the past year with scans and biopsies and bad news and chemo and targeted therapies and surgery and more bad news and radiation and on and on and on. Tomorrow, even before the surgery, I have to have blood work and an EKG, all of which could derail the surgery. I hate the sheer amount of hoops I’ve had to do to have this surgery, and I hate that I need this surgery. I hate breast cancer. I’m thirty-eight years old. Come on.

I want Wednesday to close a chapter. I want Thursday to start a new chapter. And, I want, with everything I have, the next chapter to be one that does not revolve around the question: is this going to be how I end? I want, with every fiber of my being, this to be my path back to health.

I scheduled my last two Herceptin treatments today, too. I have one on August 5th, one on August 26th, and the last one, please God, on September 16. This surgery is, what I hope, the last huge hurdle. The rest are little bumps in the road.

I don’t want to have to pretend anymore that I’m always fine. I don’t want to have to listen as well-meaning people tell me stories about so-and-so who had cancer, but they’re fine (or, worse, the stories that end with the person not being fine). I don’t want to have to miss work for treatments and surgeries. I don’t want to have to miss time with my family and children.

I want tomorrow to start a countdown that ends with me having no evidence of disease. I want to be able to live my life, like Dr. O said she expects me to do. I want to see my kids grow up. Honestly, that’s all I want. I want to be around for my kids for another 3, 5, 10, 20 years. I know we’re not promised tomorrow, but I’m willing to bet we all have plans made. Yet, when you’re hit with a life-threatening disease, todays become precious and tomorrows become wishes. I wish, with all my might, to have more tomorrows. I’m not ready to be done yet.

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breast cancer, life, Uncategorized

Pinkwashing makes me angry

I make it no secret I have issues with the pink ribbon campaigns.

Exhibit A: The billboard I saw a couple of weeks ago as I drove home. image It made me irrationally angry. I was at a red light, saw the billboard, and snapped this photo. Drink pink. Really? Drink pink? If you can’t read the small print, it says, “DRINK PINK with strawberry milk.”

Come on. How does this help breast cancer research? How does this help those living with breast cancer? And, before anyone says, “But, it’s for Race for the Cure,” yeah…and? There’s a hashtag on Facebook (and other social media, I’m sure) #iamsusan. Check it out. I cannot encourage you enough to Think Before You Pink.

To me, the pink ribbon campaigns downplay the severity of breast cancer. It is a life threatening, life altering disease that is sexualized because it is a breast disease. There is nothing cute about breast cancer. I have two, four inch scars across my chest. I have two weird shaped silicone inflatable expanders underneath my pectoralis muscle. Stretching my left arm hurts because of muscle and skin tightening. Save the boobies and no bra days in October do nothing to address the disease. In fact, to me, things like that downplay the fact that this is cancer. It does not play fair. It does not discriminate. It does not care who you are, what you do, or what you’ve done. Cancer. Does. Not. Care.

Early in my treatment, someone casually asked me what I thought caused my breast cancer.

Me:  ¯\_(ツ)_/¯

I didn’t do anything. There’s no family history. I’ve done breast self exams since I was a teenager. I’ve had clinical breast exams every year. I don’t have the BRCA genes. I have (had?) ER and HER2 positive, stage 2a, grade 2 breast cancer. Why me? Hell if I know. Lord knows I’ve asked that question countless times since last August.

I feel pretty confident in saying most of us want to help when a friend or family member is diagnosed with breast cancer (or any other cancer). So, what to do?

Be there for them. Be the friend they need. Be the shoulder they need to lean on. Be the person who makes them laugh. Be the person who sits there offering silent support when they need quiet. Just be there.

For some reason, Pinterest suggested this Buzzfeed article to me tonight: 17 Things No One Tells You About Breast Cancer. For me, it’s so true. The language throughout the article is strong, but I’ve described my cancer ordeal using less than polite language with my friends and family, too. Sometimes, those words are the best summation. This year is the first time in my 38 years where I’ve said the f-word numerous times around my mother and didn’t get glared at, my full name said, or a disapproving sigh from her.

A pink ribbon isn’t going to change the fact I’ve spent the last year dealing with breast cancer. A pink ribbon can be a sign of solidarity for those who’ve walked this road, but pink ribbon campaigns need to be more than making breast cancer out to be this cute, bright, happy turn of events. Breast cancer is cancer, and pink washing doesn’t change that fact.

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

Bits and pieces

I’m having a hard time lately putting my life into coherent, flowing thoughts. Right now, it’s more of a jumbled, stream-of-consciousness, think all the thoughts blur.

I spent all of last week at an intense training workshop for a new AP class I’m teaching next year. The training was great, but I’m overwhelmed with everything that needs to be done for the class. Normally, I wouldn’t freak out over planning a class since school doesn’t start for another month (at least for students), but my reconstruction is scheduled for this coming Wednesday. I’m about to be down and out for weeks. I’m going to try to go back to work on August 11. I’ll be 15 days from surgery by then. It’s ridiculous for me to think I can go back to work 15 days after a DIEP reconstruction, but, as I told A earlier this week, what choice do I really have? I don’t want to miss the beginning of the new year. So, I’m going to do everything I can do to rest and heal and take it easy and suck up feeling like a burden and reconcile myself to being someone who needs help for the entire time I have at home after surgery and before going back to work. No one is forcing me to do anything but me and my sense of dedication. That, and being at work forces me to concentrate on something besides cancer.

I hate feeling like a burden, and as surgery looms, I feel like a burden. I’m going to need help for me, help with the kids, help with my classroom, help with everything, and I know I’ll have help, but I feel like I’m imposing on my parents, my in-laws. Oh, and we’re moving four weeks after my surgery. I won’t be able to help with ANYTHING. I can’t help pack, I can’t pick up anything, I can’t reach over my head. My surgeon said I am absolutely forbidden to lift anything over 10 lbs for at least two to four months after surgery. He also said I’ll have T-Rex arms for a good few weeks. That sounds delightful. Not. Basically, I feel like I’m about to become useless. My nature is to do all the things for everyone else then care about myself. I can’t do that once I have surgery. I have to care about me.

The day my surgery is scheduled, A can’t be there with me before I go into surgery. He has a can’t miss conference, and truth be told, as much as I’d like him there while I’m waiting to go back into surgery, I’m glad he can’t be there. I’m glad he has something he has to do instead of sitting in a waiting room for hours and hours. It’s tortuous. He and I had a fantastic argument over him trying to get out of the conference. He feels he needs to be with me. I feel there’s no sense in him being there when they’ll keep him updated via cell phone the same way they would if he were there. So. I won.

Truth be told, the day of my surgery, I’d rather drive myself to the hospital, check myself in, and be there by myself for all the pre-op stuff. It’s like my last act of independence. And, if I’m by myself, I don’t have to act happy or unconcerned. I can just be alone with me for awhile. And, yes, I know exactly how selfish I sound. The thing is, I’m a contrary soul who needs a hug then craves solitude. The day of my surgery, I want the hug and the solitude. I want to drive to the hospital blasting my playlist entitled Music The Kids Can’t Hear and be alone with my thoughts. I know my family will flat out refuse to let me drive myself or sit there alone, which I understand, too. This years has been so unforgiving to my parents. So, yes, I know what I wish for is selfish, and I won’t be selfish.

It’s nearly 2 am. It’s not that I can’t sleep. I’ve been dealing with insomnia for the last several weeks, but insomnia isn’t the problem tonight. I just don’t want to sleep, which is going to make me a treat to deal with tomorrow (today?). I promised to take the kids swimming, and we have a family dinner at night. I really am going to be a joy.

The last two weeks have been emotional roller coasters. I’m coming to the anniversary of my gut telling me something wasn’t right. It’s hard to deal with the emotions. I’m still angry my body betrayed me. I’m still scared because my body betrayed me.

It’s been almost a year since I heard those four words – You have breast cancer. It’s gotten easier in some respects. It’s gotten harder in others. I’m not immortal anymore, not that I ever really was, but I’m young, so it felt that way. I’m not a hypochondriac anymore. I actually have things very wrong with me. I don’t need to imagine something’s wrong. I’m not afraid to speak my mind anymore. I’m more grateful for the time I have with my family. I actively search out moments and places of peace.

I want to believe I’m coming to a level piece of track on this cancer coaster. I want to believe we’re going to get a reprieve from the steep climbs and seemingly endless drops.

But, I don’t trust my track record.

breast cancer, family, kids, life, Uncategorized

Quiet

imageI’ve been quiet lately. There’s nothing wrong. We’ve had so much to do, and I had several appointments over the last week. It’s been easier to be quiet. But, it’s also been about living life.

I’ve spent a lot of time over the last two weeks with my children. We’ve gone to the waterpark. We’ve gone to the rebuilt community park. We’ve explored and played Pokemon Go. We’ve gone to the movies. We’ve gone to the mall. I’ve tried to cram a good chunk of their summer vacation activities into the last few weeks because I have a training I have to go to all of next week. Then, the following week, I’m having the DIEP flap reconstruction. So, their summer activities pretty much come to a screeching halt beginning Monday. I feel bad about it. There’s been so much upheaval in their lives over the last eleven months, and the majority of it is my fault.

It’s hard not to blame myself.

Maybe that’s why I’ve spent a lot of time being quiet lately. I try my best to enjoy my time with them even when I do not want to do what they want to do. It’s 100+ degrees outside here in Texas. I do not want to go outside unless we’re heading to the waterpark, but AJ wants to go Pokemon hunting, so outside we go, armed with my phone, water bottles, sunscreen, and hats. S wants to go to the community park. It has a zip line, slides, swings, a ground level trampoline, and other park attractions. She’s our thrill seeker, so sure, we can go to the park. I’ve tried very hard to say yes to their every request as far as going to do something lately. I don’t want them to remember this as the summer where mom had to have surgery (again), so they couldn’t do much. I want them to remember this as a summer like anyone before it.

Breast cancer has interrupted our lives enough over the last eleven months. It doesn’t get to steal my kids’ summer.

breast cancer, life, Uncategorized

Synonyms

philosoraptor-synonym
Found on funnymeme.com. No infringement intended.  

I don’t like the word “survivor” when it’s associated with cancer. It really bothers me. I mean, REALLY bothers me. It really bothers me society views cancer as a battle because either you survive a battle or you don’t. It’s that simple, but cancer? Cancer isn’t simple.

Cancer should not be quantified as a battle. Those with cancer should not be quantified as survivors because that implies those who die from cancer lost a battle; therefore, by definition, they are victims or losers. It’s just not that simple.

If I die from cancer, I am not a victim, and I am certainly not a loser. If I die from cancer, I will succumb to a disease like millions of others. It will not be from lack of trying or because I did something wrong.

There is no fault in someone who develops Stage 4 disease. Some are diagnosed at Stage 4. They did nothing wrong.  A person who is arrogant enough to believe someone with Stage 4 disease did something wrong or didn’t do enough needs to remember cancer will affect 1 in 2  people over the course of an average lifetime according to the American Cancer Society. So, sweet summer child who believes he or she will never develop cancer, maybe you will be that magical person or two who lives life without ever developing cancer, but for the rest of us, cancer is a real risk or already our daily companion.

For the last eleven months, I’ve spent a lot of time wondering what I did wrong. I’ve spent a lot of time blaming myself. I’ve spent a lot of time being angry. I’ve spent a lot of time being afraid.

Occasionally, in an effort to cheer me up, well-meaning friends will quote, “No one is promised tomorrow,” and they’re right. Tomorrow is not a promise. We feel we’re entitled to a tomorrow and a next day and a next. But, are we? How are we any more entitled to a tomorrow than someone else? We hope for a tomorrow. We hope for a future. It’s not wrong to hope for a future. I hope for a future, yet I drove to where our new house is being built today, walked around the foundation, and in my head, I saw where the bedrooms will be, where the family room will be, where the kitchen will be, and I thought, “Maybe I’ll get to live here. Maybe I won’t. If I do, it might not be for very long.” Morbid thoughts? Absolutely. Wrong thoughts? No. I don’t know if, or for how long, I’ll get to live there. I hope for a future there, but I don’t know what tomorrow holds. I know I want to live there with A and S and AJ. I know A and I see it as our forever home, which it ironic since we both know I won’t get a long forever. I get for now…however long for now might be.

Here’s the thing: A person without cancer is no more entitled to believe they have a tomorrow than a person with cancer. Should I entertain thoughts of my death? Probably not, but I don’t get to believe I’ll live to be 40…50…60 or beyond. I have (had?) cancer. I don’t get to see myself as immortal, which we, as humanity, do. We know we’re going to die, but since we don’t know when we’ll die, we see ourselves as living a long life, of having a forever.

I used to pray for a long, healthy life. God didn’t answer that prayer of mine. I also used to pray that my children, my husband, or myself wouldn’t develop cancer. God didn’t answer that prayer of mine, either, but you know what? At least it’s me. I’d rather it be me than S or AJ or A. You know why? Because as much as I’d like to live until I’m 101 and die in my sleep like my great-grandmother, at least I’ve grown up, and I want S and AJ to have the chance to grow up. I’d rather it be me than A, and since it is me, what else do I say?

My days on this mortal coil are numbered, but so are everyone else’s. I just feel it more urgently because I’ve been touched by cancer. My grandfather died of lung cancer. He started smoking as a teenager and smoked until he was in his fifties. He died in his sixties. My grandmother died of ocular melanoma. She was in her eighties. My other grandfather died from complications of Alzheimer’s. He was in his eighties. My other grandmother died in her sleep. She was in her late eighties or early nineties. I believed I would live a long life as they all did. I saw no reason why I wouldn’t. Then, cancer happened at 37, and I realized it’s pretty unlikely I’ll live to see my 50s or 60s or beyond. Somedays, I feel like it’s unlikely I’ll see my 40s. And, you know, it’s not fair. But, life isn’t fair (how’s that for cliche?). It really isn’t, though. Life isn’t fair. My current lot in life isn’t fair. I have (had?) breast cancer.

But, I’m not a survivor. I’m not in a battle. I haven’t won the battle. I haven’t lost the battle. I’m not a winner. I’m not a loser. Cancer isn’t a battle. Cancer just is. Cancer is a disease. I have a disease. My disease has treatments, which I’m undergoing, and if/when my cancer comes back, it will have no cure. There are more treatments but no cure. More money goes to early detection or breast cancer awareness campaigns than treatments for Stage 4 breast cancer. We don’t need early detection or breast cancer awareness campaigns. Who isn’t aware of breast cancer? Thanks to pink washing, we’re very aware of breast cancer. We need treatments. We need cures. We need the cancer moonshot and other initiatives to produce results for all cancers. Cancer is more than one disease. Breast cancer is more than one disease.

No matter what, no matter who cancer touches, cancer should not be quantified as a battle. No matter what, those with cancer should not be quantified as winners, losers, or survivors.

Everyone is a survivor, whether we have cancer or not simply because we’re alive. Everyone is surviving something. Everyone dies to something. My great-grandmother, who died in her sleep at 101, did not lose. No one said she lost anything. Instead, she died in her sleep. People who die of cancer, die of cancer. They did not lose to cancer…that would be like saying my great-grandmother lost to old age. How ludicrous sounding! So, why do we imply those with cancer lost to it? Isn’t that just one more slap in the face?

I realize my opinion is probably not a popular one. There’s a David and Goliath quality to cancer, and if you have no evidence of disease, you are David to cancer’s Goliath. It’s a seductive image…to defeat that which seems impossible, to be a victor.

I’d like to be a victor, but more than anything, I’d just like to live. I’d like to see my children grow up and grow old with A. I just don’t know if that’s going to happen. And, if it doesn’t happen, I don’t want to be referred to as having lost my battle with cancer. I’m not in a battle. I’m not a survivor. I’m not a loser. I just have a disease. That’s all.

breast cancer, family, life, Uncategorized

Goodbye long hair

imageI packed up my wigs today as I packed up our master bathroom. We’re in the throes of decluttering around here as we prepare our house to go on the market. It took me all of last week to get the kitchen and living room decluttered and packed up except for the essentials. So far, it’s taken me all of this week to work in our master bedroom, bathroom, and closet. Today, I’m working in the master bathroom, where I’ve kept my wigs on wig stands since October 2015.

When my hair started falling out, I thought I’d never feel like myself again. I’ve always had long hair. My mom never cut it short when I was a kid. I couldn’t imagine what I’d look with short hair, much less no hair.

I remember sitting in my classroom one afternoon in October with over a dozen kids in my room for a test retake, and while I sat there, grading papers, I ran my hand through my hair, a handful came out, and I froze. I just stared at it. I tried not to cry. I had kids in my classroom. I couldn’t lose it in front of them. I’d been their teacher less than two months at that point. I didn’t want to seem weak.

Two kids saw it, saw me, and exchanged a look with each other. The boy shook his head at the girl, and they both went back to what they were working on, and within a few minutes, the boy said, quietly, “You know what, Mrs. V? Next week, you’ll be able to wear whatever color hair you want to school and no one will say anything to you about it.” That moment of kindness from a sixteen year old is something I will never forget.

I started wearing wigs after that and wore them almost everyday until this March when I woke up one Friday morning, decided I just didn’t care anymore, and went to work wigless. I’ve gone wigless since that day, yet packing up my wigs today was bittersweet. I put each of them on…my red and white striped one, my favorite black and blue one, the purple and black one my mom looked everywhere to find, my brown one that perfectly matched my precancer hair color, my other brown one with golden red highlights I wore most often.

I’ve become accustomed to my short hair. I’m glad to have hair again. I wonder if I’ll get to keep my hair, or will I lose it again to a cancer recurrence?

My scumbag brain reared its loveliness this week. I had an echocardiogram on Tuesday prior to Herceptin. I guess it went ok. I haven’t heard anything. I’m down to four Herceptin treatments. I have reconstruction in a month. Our new house has a foundation and plumbing. We went to design on Monday and picked out the interior features. My scumbag brain whispered, “You know you may never get to live there, or if you do, it may only be while you’re dying.”

Thanks scumbag brain. Thanks so much for that one. Jerk.

A friend of mine, who is an 11 year survivor of HER2/ER+ breast cancer, sees the same oncologist I do, and she was there on Tuesday for her yearly check up. She met me after her appointment and sat with me for awhile during Herceptin. I told her some of my fears. She listened. She just listened. I needed that. She has a soothing, calming presence. She came running up to the hospital the night of my surgery when we found out the cancer was in my lymph nodes because A called her and asked her to come. Then, she sat with me and told him to go away while we talked because she’d been in my shoes. She knew how I felt. I talked. She listened.

She’s one of my inspirations. I want to be like her, not just a cancer survivor, but to have the peace she has, the calm nature. She gives and gives and gives to others while still taking time for her own well-being and lives her life.

I’m grateful for friends like her as I near, what I hope, is the end of this cancer treatment portion of the cancer coaster ride. Friends like her help me find my peace when it’s run away.

I know my seat on the cancer coaster is a permanent one, but as I packed away my wigs today and said goodbye to my long hair, I hoped that maybe this closes out one segment of the coaster and maybe another one will begin where the dips and drops and hills and climbs will be less sudden, where the track will be more even, and where there will be more moments to just enjoy the scenery instead of watching it scream by as I hurtle down a heart stopping drop. Maybe there will be many more moments of even track and less moments of despair.