breast cancer, family, kids, life, Uncategorized

In the quiet

IMG_1816

My mind is quieter tonight. I sit here, reclined in our bed while A sleeps, and though Dr. O was adamant about me getting more sleep, my mind works, processing today.

I remain no evidence of disease.

Another 20-week reprieve.

Monday night, one of my best friends texted me this reminder

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It struck me, the truth in her words, the truth in the privilege of the word “get.”

I’m alive.

What a privilege it is.

Summer appointments are hard because it was this time in 2015 when my gut began screaming at me that something was not right with the hard knot I could feel in my left breast. I ignored my gut until August when I couldn’t ignore it anymore. I wonder if I would have called Dr. B if I had not raised my left arm to towel dry my hair that fateful August evening and noticed, with horror, undeniable physical proof something was not right with my left breast. I called Dr. B the next morning. In that moment, my breast cancer roller coaster ride began.

Thanks to Dr. O, I get to be here, for now, and for now is enough. As one of my longtime mentors reminded me when I was first diagnosed, something each day has to be enough, even the smallest thing. That’s gratitude.

I know, come November, my mind is likely to do to me then what it’s done to me over the last three weeks, what I’ve allowed it to do to me. I understand I allow it. I’m not sure how to cope or overcome it. Maybe accepting it, my fear, is enough. I am scared breast cancer will be the end of my story. Appointments with my doctors might always bring up my fears. I have to accept that.

I felt silly at my appointment today. In one hand, I clutched a small, rough amethyst. In my other, I clutched a small chunk of clear quartz. It helped, though, having those in my hands. I rubbed my thumbs along side their edges, smooth and rough, something tangible to concentrate on, to use for stress and anxiety relief. My version of fidget cubes.

My bloodwork was completely, totally, boringly normal. No evidence of anything. No more anemia. No more borderline bad liver numbers. Just normal bloodwork for a 39 years old woman.

I have to go back in September for more bloodwork and scans. Dr. O switched me from tamoxifen to arimidex today. Bone density tests. Vitamin D levels. When I texted my friend with that update, she replied IMG_1823

 

 

 

Get to go.

Privilege.

Life.

I get to spend more time with A, S, and AJ, who buried his head in my neck and wrapped his arms around my shoulders when I told them I saw my cancer doctor for a check up and I’m no evidence of disease.

“I love you, Momma,” AJ whispered.

I kissed his forehead. I got to kiss his forehead.

I get to be with them.

Privilege.

Life.

As I fall asleep tonight, its with these thoughts. My mind processes. My heart grateful.

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, kids, life, Uncategorized

Falling asleep in the clothes you wore to work

Last night, I fell asleep wearing the gray winter slacks and school shirt I wore to work yesterday. I didn’t mean to, but I didn’t want to get out of bed to change.

I was exhausted. I’ve been exhausted for a long time.

It hasn’t been the best week. I had a stitch pop through my abdominal scar line, and I had to pull the stitch. It hurt. One of my classes sometimes treats me like Kayne West treated Taylor Swift at the VMAs (Imma let you finish, but…), and this week has been full of “Imma let you finish, but…” moments. I rarely have classroom discipline issues, but this has been the week for them, apparently. Then, there’s here at home…

AJ hasn’t had the best week at school, either. He’s been in trouble at his school and on the bus. His mouth got ahead of his brain a few times this week. Parenting is hard (duh), and this week, parenting him has been challenging. We’ve done it, but man. I hate being the disciplinarian. Still, since A’s normally not home before 6:30 or 7:00, the discipline falls to me.

It’s been a busy week for A. He’s had some major presentations and meetings to do, and he has to work all day tomorrow. Yesterday, after a long day for him, he snapped at me enough that I’m still brooding over it. I told him a friend had posted an update on Facebook about one of her family members who has breast cancer, and before I could say anything else, he told me to just forget about it and go take a bath to relax.

It made me feel like I am a bother to people now…when I talk about how it makes me feel when I hear about others with breast cancer. It scares me. It angers me. It makes me remember this could come back and kill me at anytime. It makes me struggle.

It makes me sad.

I walked away from A last night after he told me to forget it, even though he didn’t know what the “it” was, and yelled, “No one ever lets me just talk. You want me to be over this. Your family wants me to be over this. My family wants me to be over this. You want me to be over breast cancer, to be over Trump, to be over everything and I’m not.”

A came to find me a little while later. He told me, “I deal with issue after issue after issue every single day at work. Today was one of those days. I wasn’t prepared to deal with issues when I got home.”

…I wasn’t prepared to deal with issues when I got home.

Issues.

I’m an issue.

The sad thing is, I know I’m an issue.

So, I went to bed wearing the clothes I wore to work. I pulled the covers over my head. I cried a little bit. Then, I grabbed my phone, put on The King’s Speech, set it up on my nightstand, and I fell asleep.

Today was a little better for me. Maybe this weekend will be, too.

breast cancer, family, kids, life, Uncategorized

Stuck in the mud

I feel stuck.

There are appointments with doctors looming next week during my vacation. An appointment in Dallas for my hormone blocking shot. A 6 month check up with my radiation oncologist.

I had to call Dr. H this week. Two really strange looking places appeared on my left shoulder and triceps. Her amazing assistant had me take pictures and email them. Dr. H called back shortly afterwards and told me the spots look like bug bites and if they’re still hanging out in a week or two, I should call back, but she reassured me that she’s never, ever seen a reoccurrence appear on the skin like these. I asked her several times if it was possible these spots were skin mets. She was adamant they are not. They don’t fit the characteristics. They fit the characteristics of a bug bite or allergic reaction on the skin. And, they came up so fast. Literally, I went to bed one night with an itchy red spot. I woke up the next morning with a blister looking place. Throughout the day, the blistered place itched and a red ring appeared outside it, like an infection. That’s why Dr. H thinks the places are some sort of bite. At this point, I refuse to worry about them anymore. They look like they’re healing and going away. They don’t itch anymore. And, the red ring around them has disappeared.

This is the life of a cancer patient. Appointments with doctors. Phone calls with doctors. Fear of mets. Sleepless nights. Aching joints.

My ankle joints and my heels hurt so much last night, I actually had to give in and take an anti-inflammatory pain killer. I haven’t had to take a pain killer in months, but I could barely walk last night. My left ankle and heel hurt all day yesterday at work, and by the time I got home, both the left and right hurt. By the time I headed to bed, I could barely walk.

There have been some really hurtful things said to me over the last two weeks. My former students and some of my current students have come to my defense more than once. On the days when I wonder if my life has made a difference, at all, in this world, one of my former students usually proves to me, in some way, it has mattered. I’ve made a difference in their lives.

That’s enough. I know, whatever happens to me, I’ve left a mark on this world that can’t be easily erased.

I’m ready for a break, even if it’s one filled with doctors. I need some time to recharge and refocus. I also need time to unpack. We moved into our new house last weekend. We’re not quite living out of boxes, but we’re definitely living with boxes.

I need to move on from feeling stuck. I don’t feel like I have the words to really describe how I feel.

I’m just stuck.

breast cancer, family, life, Uncategorized

What My Soul Needs

Some of my family members and longtime friends would likely describe me as contrary.

They’re not wrong.

Growing up, I wanted to please everyone and be loved by everyone. I often felt overshadowed by my older sister. She had a lot of issues as a teenager, and her problems took our parents’ time. Part of me was glad she took so much time and energy because that was time I could spend on my own reading a book, writing stories, riding my bike, hanging out at my best friend’s house, daydreaming. Part of me resented she took so much time and energy, though, and it festered, bubbled through my teenage years.

When I was a teenager, I wasn’t a disaster, but I needed help…guidance, and I found it at my family’s church. I found people who realized how angry I was under the surface. I guess I began perfecting those masks and facades decades ago. They, though, refused, absolutely refused, to allow me to believe the worst about myself or the worst in myself. They refused to let me fall because I had people predicting, to me, I would be like my sister, and it made me so, so angry. They were some of the first people in my life to teach me how to block someone or something negative, and it was a lesson I needed.

I remember being seven years old and watching my mom cry about something my sister had done. I promised myself, with all childhood innocence and intensity, I would do everything possible to make sure my mom never cried like that because of me. I worked hard in school, I had a small, but close, group of friends, and I had a job. I wasn’t like my sister, yet for some, I was guilty by association. It infuriated me. And, I took to being the quiet one. The observer. The wallflower. It was easier on my soul to seek solitude, to watch from the back, to loathe the spotlight. Yet, I’m a people person, and my soul craved friends, which I had, but a lot of times, my contradictory need for solitude and my need for exuberance frustrated them

I’m a contrary soul.

Flash forward 20 years. I was 18 then. I’m 38 now. As I’ve dealt with this past year, I’ve found my need for solitude is as strong as it was when I was a kid. I need time to be quiet, to think, to read, to write, to daydream, to settle. Yet, I need my friends, I need to be around others, I need to help, to give of myself, to be a support to those who’ve supported me.

Tonight, it hit me, strongly, how very tired I am. I’m weary. I’m not anxious. I’m not sad. I’m not on the verge of a panic attack. I’m just weary. My soul craves solitude. I need time to reflect, to think, to plan. I need to sleep well. I need to go more than 8 weeks without a treatment, procedure, or an appointment. It’s mindbloggling to me, the timeline of this last year. I had a one month break between finishing chemo and my mastectomy, a three week break after the mastectomy to starting radiation, a three month break after radiation ended to my reconstruction, and an eight week break before my most recent procedure-removing my port.

September 2015-January 2016: Chemo, Perjeta, Herceptin every single three weeks. 6 hour infusions. Intense treatment.

February 2016: Bilateral mastectomy with auxiliary node dissection while continuing Herceptin.

February 2016 through April 2016: Radiation while continuing Herceptin. Intense radiation. Echocardiogram for heart function. CT scans daily

May 2016: Herceptin. No procedures.

June 2016: Herceptin. No procedures. Echocardiogram for heart function

July 2016: DIEP reconstruction while continuing Herceptin.

August 2016: Went back to work 15 days post DIEP while continuing Herceptin.

September 2016: DIEP abdominal complications. Last Herceptin.

October 2016: Port removal procedure

So, I’m weary. I’m just tired. I can’t be everything to everyone no matter how much I want to be because my soul needs me to recognize I have limits.

I can’t argue with friends who refuse to listen to logic because my soul needs me to understand it’s not my job to please every one. It’s my job to take care of me.

My soul and I agree on one thing: I’m doing better at taking care of me. I find time to meditate. I find time to read. I find time to be alone. My soul needs me to honor my needs. I can’t be me if part of me is just this weary.

I can’t fix all the problems. I can’t be mad when I have FOMO (fear of missing out) happening. I can’t allow myself to do always for others and nothing for myself because I hate being the contrary soul.

My soul, though, needs me to embrace its contrariness, to remember it’s ok to need people and solitude, to belong yet not belong. It’s ok to be me. I was this way before cancer. I’m this way after cancer. I’m meant to be this way. What my soul needs is for me to remember that, to honor that, and most of all, to accept that because if I can’t or won’t remember, honor, and accept myself, who 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, life, Uncategorized

I took a break today

I saw Dr. L this morning. Over the weekend, the swelling went way, way down. I did nothing but sleep on Saturday. My in laws put me in my sister in law’s bedroom, gave me the TV remote, and let me be. I slept for hours.

On Sunday, I stayed in bed until late afternoon. We had a family birthday party for S planned. I went to the birthday party and sat.

Today, I slept almost all day after my appointment with Dr. L. The swelling is pretty much gone. No in-office draining attempt needed. He sat with me and told me he gets my fear, he really does, but the problems I’m having right now are surgery complications. They are annoying. They are frustrating. They are scary. They are manageable. It’s going to take months for the hole to heal, but, the good news is, the fluid from the swelling had a place to go, and it took that path. It just isn’t fun for me or my scumbag brain. He sent me home with orders to rest, to take it easy, to stop pushing myself so hard.

I took the entire day off today. I slept once I got home from Dr. L’s office. I just slept. I woke up right before S and AJ came home from school. Once they were home, they played on their own, for the most part. S made dinner for them both, telling me to stay in bed. She had it handled.

I’m not ready for her to be mature like that, but she is. And, intuitive. She knows it’s been a tough weekend.

We aren’t done with the dips on the track. Maybe we’re coming out of a dip now, though. Maybe we’re going to get a calm. That would be nice.

Today’s break was a good one, a much-needed one. Tomorrow, I’ll move a little slower, be tired faster, need to sit down more, and that’s ok. It has to be ok because I can’t be me if I can’t let myself heal, and for once, I’m going to follow my doctor’s advice: Slow down. Take it easy. Rest when you can. Stop pushing yourself.

breast cancer, life, Uncategorized

My day doing nothing -or my first full day home from the hospital after the DIEP

6 days post DIEP…1 and 1/2 days home

6:30 am: A leaves for work. His parents come over to watch the kids…and me. As A leaves, he tells me to take it easy since I didn’t sleep incredible well last night. (I had a straannngggeee dream where I was back in the ICU. I woke A up around 1 am trying to pull an imaginary oxygen mask off my face and apologizing for throwing the medicine 😂.)

7:00 am: I drink a cup of coffee, take my morning medicine, and eat a banana. Deal with my drains.

7:30 am: I go for a walk.

8:30 am: I decide to rewatch the US Men’s Olypmic Trials because there’s nothing else on any of our other hundreds of TV channels

9:30 am: Don’t feel great…feel run down.

9:50 am: I take a shower. It was harder to shower today. My neck hurts some from the lanyard I use to hold my drains in place while I’m showering.

10:30 am: I tell my mother-in-law I’m going to take a nap and set an alarm for 1:30 pm, the next time I need to take medicine.

1:30 pm: I guess my alarm went off.

3:30 pm: I wake up. Also, I now know how it feels for Satan himself to draw a line of fire across my abdomen. My mother in law brings me a sandwich and medicine.

4:00-5:45 pm: My mother in law and kids hang out in my bedroom with me. AJ proudly shows me all the toy pets he’s collected from The Secret Life of Pets. I ask where he got them. “Happy Meals.” Me: Whatever

5:45 pm: A gets home from work.

6:00 pm: Father in law brings us dinner.

7:00 pm: A tells me I don’t look so hot. I glare at him. He changes his statement to, “You look worn down today.” I glare at him. “You know what, I’m just not going to talk anymore.”

7:30 pm: I tell A I don’t feel as good today as I felt yesterday or Sunday.

8:00 pm: A remakes our bed and puts HGTV on for me as I slowly walk around the house, and by slowly walk, I mean shuffle around using the walls as supports.

Conclusions from my day doing nothing: I feel better when I make myself get up and do stuff. I can’t just chill in bed all day while I’m recovering.

Random observation: My relocated belly button looks like one of those fake wounds people attach to themselves for Halloween. I don’t trust it. 🙂

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

There’s tired…then there’s TIRED and beaten

tired kitten
Image from memecrunch…no infringement intended.

I am TIRED. I’m fatigued. I cannot get enough sleep.

It’s testing season at work. We have STAAR testing. We have AP testing. My students are tired. I’m tired. My husband is tired. My children are tired. We’re just TIRED.

I saw a cancer counselor. She asked me how I’m coping with, what she called, the top two physical issues of survivorship: fatigue and memory/concentration issues.

Uh? As best I can?

I’m still trying to go, go, go as I did before cancer. I go until I hit a brick wall (normally metaphorically, but there are brick walls throughout the high school I teach at, and I’ve been known to turn and run into one as I try to avoid getting run into by students during passing periods 🙂 ) Consequently, I’m TIRED. So, basically, the fatigue is my fault. And chemo’s fault. And radiation’s fault. Ultimately, it’s cancer’s fault.

Thanks cancer.

I force myself to stay awake at night so I can read or play a game and relax, which I need to stop. Tuesday night was one of those nights where I was so tired, I started crying and being bitchy to A. He took my iPad out of my hands, told me to go to sleep, kicked the cats out of the room, turned off the lights, and shut the door. I hate when he does that to me, but he’s right. I needed sleep. And, I slept. Just not enough. It feels like it’s never enough.

My AP students have the AP test next week. I’m holding tutorials every day after school and a night session. The night session is a killer. I know the adage of if they don’t know it by now, they’re never going to know it, but I’m not that kind of teacher. I teach bell-to-bell, everyday, full out, we have things to learn, things to do better, we can do better and be better, so we’re going to go until the day of the test. My students have worked hard, and they deserve nothing less than my best, my support, and my belief in them.

This fatigue makes it so hard for me to be everything I need to be to everyone. I need to do, though because, secretly (not so secret anymore!) I’m afraid I won’t be around to keep doing.

I have no faith my cancer is really gone or won’t come back. I just don’t. So, I go and do and push myself to the limit because I don’t know if I’ll be able to go and do and push myself in the future.

I push myself beyond my limits. I don’t want to have limits. I want to live. I want to do and be. I don’t want to allow cancer to defeat me. Yet, I fear it will, so I’d rather be tired. At least I’m alive.

For now.

 

breast cancer, life, Uncategorized

Healing

I woke up this morning and found the burns under my arm have turned tan.

I woke up this morning and found the bleeding burns on my mastectomy scar and below it not bleeding and tender, fragile, pale pink skin surrounding it.

It’s healing.

Finally.

Two weeks of extensive burn treatments three times a day, everyday. Finally. I can see healing.

Honestly, it’s amazing how much better my skin looks since Thursday when I saw Dr. D for a follow up. The crusted, bleeding, angry, red skin is gone, for the most part. The skin is now tan and pale pink. There is still one small burn on the upper side of my expander near my sternum, but even that area looks better today.

I slept Thursday night. Actually slept. Granted, it was sleep aided by my sleep medicine, but it was sleep. Healing, deep, unbroken sleep.

I didn’t go to work Friday. I had infusion, and I needed to deal with my burns because they were still ugly Thursday night and Friday morning. I did an intensive burn and skin treatment Friday morning. I had so much dead skin peeling and so much gray skin. So, when I showered, I gritted my teeth and cleaned the burned areas and peeling areas with a soft washcloth and Dove shower soap. Then, I cleaned the burns and bleeding areas with Hibiclens.  Then, I did a burn soak with Domeboro. Then, when everything was dry and I’d gotten a lot of the dead skin off, I doused my left side with silverdene. That stuff is a miracle worker.

I slept last night, too. Again, it may have been aided by my sleep medicine, but it was sleep. Healing, deep, unbroken sleep.

And, I woke up this morning to find my skin healing. Truly healing.

I woke up this morning and found myself rested, truly rested, physically, mentally, and emotionally.

God, I needed sleep. Restful, healing, deep, unbroken sleep where my brain couldn’t be a scumbag, where my skin and body didn’t hurt, where I could relax and heal.

Thursday night and Friday night, I slept.

I healed.