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.

IMG_1583

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, 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, life, Uncategorized

Taking off my surgical bandage always reveals a surprise, most of them, unwelcome

Annnnnddddd another part of incision has reopened. It’s leaking. It’s all on my cursed left side. Breast cancer. Left side. Extensive radiation. Left side. Surgeries galore. Left side. Complications from DIEP reconstruction. Left side.

My scar is fairly unnoticeable now from the middle of my stomach across to my right hipbone now. I can’t say the same for the left. Start in the middle and go to my left hipbone. It’s a mess. A hole. A healing split. A new opening…could be a split, could be a hole…who knows what it’ll be when it grows up! The scar line is still slightly swollen. So. Back into the abdominal binder I go, again. Every single time I’ve been told I can reduce from wearing it 23/7 to 8/7, complications begin.

I’m 5000% over complications and slow healing. My skin is reacting to all adhesives again…even bandaids cause my skin to turn red, angry, and blister around the edge of the bandaid. Tegaderm, a fairly gentle adhesive bandage, has caused giant, sore blisters about 2 inches under my port surgery removal site. They’re in a perfect, bumpy, red line.

Dr. L warned me DIEP reconstruction can have a high complication rate, and he warned me healing could take much longer than expected. I should’ve listened better.

I went back to work 15 days after DIEP because I had no more sick days to use and couldn’t really afford to be docked. Yes, I felt as though I could handle it, and yes, I wanted to go back to work. But, I also didn’t want to be docked.  That’s the truth. I get 7 days a year. I can carry them over from year to year, but when you’ve had to take off a few days here because your grandfather died and another few days because your grandmother died and a week because you got married and a week because your new husband’s grandmother died and two months because your daughter was born during the school year and random days here and there for illness and family emergencies, the days don’t last. Add cancer to the mix? img_1389

 

 

 

 

I felt like I was ready and could handle going back, but I know now I had no business jumping back into life. I pushed myself too fast, too hard, too much. So, I guess much of this situation is of my own making.

Maybe if I’d taken better care of myself two months ago, I’d’ve healed better by now. Maybe these complications would’ve happened no matter what. Maybe I’ll completely heal one day…mind, body, spirit, soul. Or, maybe, maybe I’m setting my expectations too high.

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, family, kids, life, teaching, Uncategorized

Better Angels (#squadgoals)

I should be working in my classroom, preparing for Monday, but this post keeps circling in my head. I can’t let it go, so it’s time to get it out.

I heard Katy Perry’s new song “Rise” when the Olympics began. It caught my attention, but I didn’t pay much attention to all the lyrics. Then, I heard it on the radio one afternoon as I drove home, and I burst into tears.

The next two weeks have the potentially to be an emotional beatdown. August 18th was the one year anniversary of hearing my OBGYN, Dr. B (who is retiring at the end of August, and I’m devastated. I can’t imagine I’m going to find another OBGYN as caring and amazing as Dr. B) tells me the place I could feel in my left breast needed further testing. Today, August 20th, is the one year anniversary of that further testing and hearing a doctor tell me he could see an area of distortion in my left breast where the mass was and it was a 50/50 shot if the area of distortion was the result of a cancerous tumor or a benign tumor. We all know how that turned out for me. He told me I needed a biopsy. August 25th will be the one year anniversary of the biopsies and hearing a different doctor tell me she was 70% sure the tumor causing the area of distortion would come back as breast cancer. August 27th will be the one year anniversary of hearing those four words: “You have breast cancer.” I’m struggling as I face these dates. I don’t mind admitting it. This is hard. I sit here and wonder, am I disease free? Is it going to come back? Is Tamoxifen and the radiation doing their jobs? Did the surgery get it all?

Then, I heard “Rise,” and the speaker of “Rise” tells my story. The first half of the song is my mindset some days, more days than not. I am trying to thrive. My ending of my story is not written yet, and someone else’s story is not my own. I am my own archetype. I’m not the damsel in distress. I’m not the heroine. I’m not any of those. I’m me, and I’m lucky because I have a family with deep roots with each other and in our communities. Those roots run through me. I am not alone in this, even when I feel alone. There are days, more days than not, where I do not feel “victory is in my veins,” but secretly, deep down, secretly, I hope it is victory which runs through my veins. The one thing I have absolutely refused to do over the last year is negotiate with my desire to survive. I demanded my doctors do everything they could to get me in at Baylor Dallas with Dr. O. I did the most rigorous course of chemo and targeted therapies I could do for HER2+ breast cancer. I did not stay home and wallow too much, but there were days that I couldn’t handle and were hard, but still, I shook them off, eventually. I came to work. I taught my classes. I graded papers. I went to every school event I could go to. I did my job as a mother to the best of my abilities. I went to their school activities. I kept up with everything as much as I could, even when I felt horrible. I refused to let cancer steal my daily life too much. Yes, there were days when cancer and cancer treatment won, but there were more days when I did, even if I didn’t feel that way. I did fight. I still fight. We ALL fight demons everyday. Self doubt. Anxiety. Diseases. Exhaustion. Whatever our demons may be. But, we push though, even when all hope looks to be lost. We still rise. I still rise.

But, there are days, there have been days, there will be days when I can’t fight. I have little faith. I doubt myself and everything about my life. I feel hopeless. It’s too hard. And that is where my better angels, my squad, my friends, coworkers, and family, come in and remind me that I will not doubt, I will not negotiate, I will fight, I will rise again. I’ll be different. Everything may be different, but I can find my way through if I just let them help. They are part of my roots, my better angels. And, as these really hard days approach, they tell me some things that helps: Someone else’s story is not your story. You have an incredible medical team. You’ve done everything you can do. This is out of your hands. We love you. We’re here for you, anytime, anywhere, anything. Here’s dinner. Take it and be quiet. I’m coming to get S and AJ for the afternoon or evening. Can I help you set up your classroom? You wear that pixie cut so well! Are you going to keep your hair that way (I don’t know…maybe. I’m enjoying the faux hawk, though)?  How are you doing, and you better tell the truth. I know when you’re lying. I know your tells. Don’t treat me like a stranger. If you need to cry, cry. Here’s my shoulder.

They remind me to rise. They douse the fire at my feet. They tell me I am not out of time yet. I’m still here.

I’m still here.

I would not be here without them. They are my better angels. They are the reason I can rise on days when I want to pull the covers over my head. When I can’t, they can. My better angels prop me up when my faith is shaken and gone. They help me find my steady and my faith again. I rise because they insist I rise.

I know angels exists. I see them everyday in my life. They’re my friends, my family, my coworkers. They’re the reason the last year did not decimate me. It cracked me and it broke me, but with their help, I could put myself back together. Some pieces are missing, some pieces are irrevocably changed and forced into space, some pieces are tattered, but those pieces, they’re there. I’m still here. My story isn’t someone else’s story. We don’t know what my story is. My better angels remind me of that every single day.

So, thanks to them, I rise.

breast cancer, life, Uncategorized

Are you sure you’re ready to hear?

An astute friend texted me on Tuesday to check on me before my doctor’s appointment. When I told her I was there alone but still intended to ask my questions, she texted me back one question: Are you sure you’re ready to hear the answers by yourself?

I answered her honestly. No. But, I needed to ask and hear. So, I went to see Dr. O by myself, armed with my questions, and quaking with nervous energy.

When I got there, I found a surprise, and as much as I hate surprises, this was a good one. A woman who had been my assistant principal when I was a high schooler was there. I’ve known her most of my life…since I was at least eight. She and my mom worked together for a long time. She was a rock for me when I was a high school student, and she’s been a rock for me since I was diagnosed. She’s a breast cancer survivor. I knew she had an appointment on Tuesday, but her appointment was hours before mine. I didn’t expect to see her, but there she was when I finished checking in.

She sat with me for quite awhile, and we talked. Or, rather, she talked while I listened. She talked to me about my fears. She understands them, but her perspective is so different from mine. She told me I have to realize I have no control over any of this. There’s no illusion of control. She told me I have to make peace with it and realize if and when it’s my time, it’s my time. No one wants it to be their time, but everyone has their time. She told me all I can control is how I treat myself and what I do to help myself. Right now, I’m not treating myself well, and I’m certainly not helping myself. She told me I have to remember that cancer may not define my end. Her husband is a police officer, and he once told her she had to stop fearing he would be shot at work when it was just as likely he could be mowing their lawn and be hit by a car that missed the curve by their house. She told me she often comes back to that conversation because it’s just as true for her…and me. She told me she understands how hard it is to live life again after cancer, treatments, surgeries, appointments, and what-ifs. She told me I have to rely on faith or find a source of strength. She told me I have to, at some point, choose to live instead of being trapped by my fear because if it’s my time, it’s my time.

That’s a bitter pill to swallow.

They called me back, and she offered to stay with me. I told her I would be okay. She made me promise to text her if I wanted company, gave me two long, much needed, hugs, and then headed on her way.

I didn’t see Dr. O. I ended up seeing her nurse practitioner, who I’ve seen before. Before I could ask anything, we realized that my chart had gotten very messed up since my surgery. We spent a good thirty minutes going back through my chart with eagle eyes. Then, she opened the can of worms and asked me, “How are you feeling?”

“Tired. I’m fatigued. I’m stressed. I’m scared. What are we doing to monitor me now? How do we know things are working? Is it dangerous for me to delay the oophrecotomy until December or beyond? What do I do now? I don’t know what to do.”

It all just spilled out.

She solved the fatigue puzzle with a look at my blood work. My counts are low. I’m very anemic. I’ve been anemic since October, but my counts had been getting better or holding steady at just below normal. Not now. They’re low. I confessed I hadn’t been taking iron because I figured it was okay to stop it since chemo was done in January. I got glared at for that brilliant move and was ordered to go back on iron. Immediately. And, I am to stay on it until a medical professional tells me to stop it, which, she told me, would likely not be until next November. She told me she wouldn’t be surprised if my counts take up to six months to rebound. I asked if it was normal to have counts like this so far out from chemo and was reminded I went straight from chemo to surgery to radiation. My body has taken a beating and a burning. My counts are low. It happens. So, they’re going to watch it a little closer.

Some vitamins are low as well. I’ve been told to start drinking a small glass of orange juice everyday.

The stress is on me. I’m doing it to myself. I’m trying to do everything full on and not asking for help or admitting how fatigued I really am to anyone. I was told to take a muscle relaxer to deal with the sore neck and shoulder muscles and to get some stress free rest. Sleep. I laughed because nothing about life is stress free right now. I was told to figure it out because I’m hurting myself.

A colleague sent me an email on Tuesday night reminding me about a training I need to attend this summer. I replied back I might not make it because I might be less than two weeks out from major surgery and asked if it’s going to be a problem. She replied with “No, and bless you for trying to be at everything even when it’s obvious you don’t feel good or are just exhausted.” I guess that’s a prime example of me stressing out and over doing.

Then, we talked about my fears and how they’re monitoring me. I swear she and my family friend must have been thought sharing because the nurse practitioner told me nearly the same thing. I have no control over any of this. I could get in my car to drive home and be in a wreck in the highway. If it’s my time, it’s my time. She told me I have to have a source of strength. She told me to remember who my oncologist is and to remember why I wanted to be with Dr. O. She told me I have to know Dr. O is watching me closely and will see me regularly. If it reoccurs, it was going to happen. She told me the only things I can do to control it are to exercise, eat better, and lose another 20 or 30 pounds. But, again, she told me, if it’s my time, it’s my time. She said there’s no rhyme or reason to cancer or if it reoccurs. She said I need to tell myself I have a chronic illness, and like any chronic illness, it’s going to require treatments.

That’s another bitter pill to swallow.

I hate…loathe…despise the fact that I have cancer. I don’t understand why I got a ticket to this roller coaster. I don’t understand why any of us end up on this ride. I seethe sometimes with how angry it makes me, or I quake with how much fear it engenders in me.

I’ve lost my youthful sense of immortality. I’ve lost my ability to see a future where I grow old with A or see S and AJ grow up. It’s impossible for me, right now, to see beyond my fear of “what if it comes back?” and I have to move beyond that fear.

I have to accept if it’s my time, it’s my time.

But, it’s a bitter pill to swallow, and I wasn’t ready to hear those words.

Those are the words I needed to hear, though.

breast cancer, life, Uncategorized

Surviving

“You’re having issues with survivorship. You feel like you’re in limbo, rightfully so, and you need to think about talking to someone.”

I saw Dr. H yesterday. It wasn’t for a follow up. It was for a freak out.

There’s a lump right below the skin of my left breast at the 10 o’clock position approximately 3 cm from center. I called her office Monday morning. I had an appointment Tuesday afternoon.

She did a complete physical exam. Then, she did an ultrasound. She is confident it is an area of fat and swelling. The physical exam felt nothing concerning. The ultrasound showed nothing concerning. She noted some changes due to radiation and looked closely at the one burned area I still have. She emphasized everything felt and looked normal. Then, when she was done with the exam, she asked the question:

“How are you doing?”

Floodgates. Open.

I feel stuck. I’m not on chemo. I’m not on radiation. I don’t see doctors every week or every three weeks. I don’t understand how we’re keeping my cancer at bay. I feel like I put myself through the tough chemo treatment for no reason because the cancer wasn’t gone, so I know my chance of reoccurrence is frighteningly high. Why did I have to do radiation when no cancer showed up anywhere but the sentinel nodes? I don’t want to do the DIEP flap reconstruction anymore. I’m exhausted. All. The. Time.

When I finished, Dr. H settled back against the counters and brought me to tears.

“I’m so proud of you,” she said. “You’ve been through so much over the last nine months, and you’ve done chemo, surgery, radiation, hormone therapy, targeted therapy without stopping or giving up even when you felt it was too much. Now, let’s talk about that list.”

The first thing she addressed was the chemo not killing all of the tumor. She stressed that “the bad actor,” her phrase for the HER2 + cancer, was completely gone. The chemo targeted the bad actor, the proliferation high, aggressive, very life threatening, bad actor. Her exact words to me were, “I will not sit here and let you think you put yourself through that chemo regiment for no reason or that you failed the chemo or vice versa. The chemo did its job. You did your job. We got a surprise. A crappy surprise. But, the bad actor was gone. That matters.”

Then, she addressed the chance of reoccurrence. It’s higher than I’d like, but it’s what I already knew. I have some factors working against me. I’m young. Those diagnosed with breast cancer before the age of 40 have a higher chance of reoccurrence because younger ages tend to have more aggressive subtypes (that would be me). I have (had?) an aggressive subtype. It was Stage 2. It was in two lymph nodes, which led to my radiation question. Dr. H said its job was to kill any disease left behind, anything in the lymph channels, and to radiate any of the breast tissue she couldn’t get because there’s always some tissue left.

As far monitoring, Dr. H told me that is her job, my job, and Dr. O’s job. My job is to watch for changes, and not just with my chest. Dr. H told me if there’s a reoccurrence, I’m likely to notice it first. I need to pay attention to my body, but I need to learn what are my new normal aches and pains so when something abnormal happens, I know to get checked out. I asked her what do I do if I’m not sure. She laughed and said to call her. She told me it’s her job to know how my chest and nodes feel now and to monitor for a local reoccurrence. She told it’s Dr. O’s job to monitor for distant reoccurrence, or the M word, which Dr. O would do by watching my blood work and ordering scans if needed.

After, she tackled my reconstruction comment. She told me it is highly unlikely Dr. L will consider me a good candidate for implant only reconstruction. My radiation was extensive, and she could pinpoint areas where my skin has thinned on my left side. She told me she felt certain I would experience capsular contracture and asked why I’m leaning away from the DIEP flap now.

I don’t want to spend all summer recovering from major surgery. I don’t want to risk missing the beginning of next school year.

Dr. H nodded and asked, “When are you going to take some time for you and what you need?”

Never. I don’t know. My nature is to care about others. I told her I’d taken off last Friday, and she, astutely, commented, “You mean a day for treatment?”

Okay. I get it. I’m not taking care of me. And? I don’t know what to do about it. So came, “All of this comes down to survivorship. You’re struggling with how to transition from cancer patient to survivor.”

I smirked when Dr. H said that. I don’t feel like a survivor. I feel like the walking wounded constantly waiting for the next shoe to drop.

“You’re having issues with survivorship. You feel like you’re in limbo, rightfully so, and you need to think about talking to someone.”

She’s not wrong.

She asked me if I’d been given access to a social worker at Baylor. I told her no. She told me to get dressed and meet her at the check out counter. I did, and she walked me across the hall to meet the social worker and licensed counselor who works with Dr. H’s patients and the patients of the two oncologists in the building. Dr. H introduced me to E and told E I’m struggling with the transition to survivorship. Then, she hugged me and ran back to her office. All in all, Dr. H spent almost an hour with me. I never feel rushed by her or that I’m wasting her time or that my questions or feelings are stupid. She is truly one of the best doctors I’ve ever known or been a patient of, and I’m so grateful to Dr. B for setting me up with Dr. H.

I didn’t have long to talk to E because I needed to pick S up from rehearsal, but the time I did spend with her was helpful. She asked me if I’d been given anything about survivorship. Nope! She told me if she had to guess, I’m exhausted, I’m trying to get back to normal, I’m anxious about reoccurrence, and I have some physical struggles from my surgery.

Check. Check. Check. Check.

E told me about the Young Survivors Coalition, gave me a navigator book on survivorship for young patients, and gave me three other books I’m to read in my spare time. Then, she told me, when I’m ready, call her. Take some time and think about things, and when or if I’m ready to talk, call her and make an appointment.

I don’t know that I’ll ever be ready for that step, but to finally have some resources for a young breast cancer patient is amazing because I’ve been looking for information for young patients since August 2015. I’ve already read one of the books.

Last night, I talked on FB with a friend who has, unfortunately, recently joined the breast cancer roller coaster, and I said “As long as we’re alive, we’re surviving.”

We just don’t know how long survival will be, and the young patient’s survivorship navigator I read tonight put it into perfect perceptive: We’ve lost our sense of immortality. Sure, we know we’re all going to die at some point, but when you’re in your thirties, death seems waaaaaay far off. That’s thirty, forty, fifty, sixty, maybe seventy years down the road! Right? Sure it is….until you hear the words, “You have _____ cancer.”

Immortality smashed. Reality checked.

So, yeah, I’m struggling with the idea of survivorship. I’m struggling with my loss of immortality. I’m struggling with my new normal.

But, at least I’m trying.

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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.

breast cancer, family, life, Uncategorized

What does normal look like?

I don’t know what normal looks like anymore. I don’t know what normal feels like anymore. I know what normal is supposed to look like and feel like, but I don’t know if I can find normal again.

A and I put some normal back in our lives this week. We both started cooking again. It may not sound like much, but we’ve lived on take out, fast food, pizza, frozen food, and leftovers sent home with us by my in-laws after a family dinner since chemo began. Yes, I know, I’m supposed to be eating healthy and all that. I know. I really do, but here’s the thing…when you work full time, when your husband works full time, when you have two kids involved in activities, when you have cancer, when you’re undergoing treatment after treatment and surgeries, something has to give. Or, it did for me. I know there are people out there who are able to do it all. I’m not them. I’m just not. Neither is A. So, what gave for us was cooking. If eating fast food and all that hinders my ability to deal with this cancer, well, I guess that’s on me. I don’t know what else to say.

As I sit here listening to conversations around me, I want to scream at the top of my lungs “I would love to have your normal!” I want to just gripe about my day because something asinine happened and not because I have a burn on my mastectomy scar that isn’t healing and keeps bleeding and I’m worried about infection. I’d like to vent about something silly like I’m hearing as I sit here outside my daughter’s dance class. And, go ahead, keep glaring at my son as he watches Super Hero Squad for the thousandth time. Say something to him. Watch how fast I’ll tell you that this is some of the most normal parts of his day because his mom is dealing with breast cancer and can’t do everything she used to do with him.

God, I crave normalcy. I crave not feeling like a failure. I crave not feeling like I’m the walking dead.

I saw a new commercial for Neulasta today and yelled at the TV screen “No one on strong chemo who needs Neulasta looks that healthy and happy!” But, maybe they are. Maybe they do look that healthy and happy. Maybe it’s just me who was unhappy and felt like death. I know there are some chemos that don’t make you look sick. I shouldn’t assume, but it’s a commercial, so I feel pretty confident in my assumption. I know it’s different in real life, and that’s something that gets me about the cancer narrative: the drugs and such directed at cancer patients show the best scenario. I’m not asking for the worst case scenario, but how about the realistic scenario? It’d be nice for something to seem realistic with cancer if it’s marketed towards cancer patients.

I’m obviously not at my best today. But, I am being honest and realistic. There are good days and bad days. I’m not having a bad day, per se. I don’t feel bad. My burns don’t hurt too badly today. I’m tired, but that’s because I woke up at 2:30 am with blood running down my tissue expander from the bleeding burn and had to deal with it. I guess my I Have no Cares to Give attitude has left the building tonight. Maybe I’ll find it again. Or maybe I’ll keep being mad.

I want to take my kids to the water park this summer. I don’t want to have surgeries this summer because I’m 38 with breast cancer. I want to go on a vacation with A where I don’t have to arrange it around infusions, tests, and surgeries because I’m 38 and have breast cancer. I just want some normal. I crave it as much as I crave chocolate, a Dr. Pepper, and seeing my children grow up.

I crave my normal life, and I don’t have it, and no matter how much A and I purposely do things we term normal, nothing will make things the way they used to be, and that’s what I want.

My life before breast cancer.