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, family, kids, life, Uncategorized

Like You’re Dying

As I sat in my car waiting for S to get out of dance class, Tim McGraw’s “Live Like You Were Dying” came on the radio. I listened to country for a long, long time, but my music taste is eclectic. I go from country to classical to R&B to rap to alternative to rock to pop…sometimes all in the same day. I haven’t heard “Live Like You Were Dying” in a long time, and I certainly haven’t heard it since August. I would have changed the radio station had it come on, and to be honest, I gave my preset buttons a hard stare as the opening chords played just now.

I didn’t change the channel. I forced myself to listen to the lyrics even though I know them by heart.

I don’t really feel as though I live like I’m dying. I guess there’s some irony there. I have cancer. Who knows how many hours are left on my clock? I don’t take much time for me. I spend as much as I can with my kids and A. I spend a lot of nights crying myself to sleep long after A is asleep so I don’t worry him. I hug my children a lot more than I did. Maybe that is living like I’m dying. I don’t know.

I haven’t gone to the beach in years. I haven’t gone back to New York. I haven’t gone back to the Smokey Mountains, one of the few places I’ve been where the beauty of the morning took my breath away. I haven’t gone to Ireland, one of my dream vacation spots. I haven’t gone back to London. I haven’t been to Italy. Most of my bucket list has to do with traveling, apparently.

I don’t want to go skydiving (I’m scared of heights). I’ve ridden a mechanical bull (it’s a thing here in Dallas). I’ve been fake-rock rock climbing. There are few risky things I want to do. My bucket list is simple. Travel with my family. That’s it.

I think everyone has a bucket list. I wish I didn’t feel an urgency to mine. But, I do. A is already talking about us going to NYC this fall, if I’m ok. Back when this roller coaster started, I told A I want a few days at the beach after my last herceptin treatment. We’ve talked about whether we keep saving up for England or go to Ireland or Italy instead. I think A feels a certain urgency for my bucket list, too. I wish he didn’t.

I wish I didn’t think about living like I’m dying. I could die tomorrow. I could live until I’m 100 like one of my great grandmothers. None of us know.

But cancer sure makes time seem more precious and scarce.

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. ┬áThen, 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.

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I guess I missed the memo

Today was “Let’s Remind L She Has Cancer and Might Die Day.” I, apparently, missed the memo.

Overslept because of sheer exhaustion due to not sleeping the last two nights because I’m trying to protect my healing, yet bleeding, burns. -Check!

Heard the words “terminal” and “die” not directed at me but as general examples during a large conversation today more times than I wanted to hear. -Check!

Went to see Dr. D for a skin/burn check and was told to just keep doing what I’m doing and at some point, my skin will completely heal but until then, there’s nothing we can do. -Check!

Yeah…it’s just been that kind of day.

 

 

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.

 

breast cancer, family, life, Uncategorized

Reflections in the Dark

It’s raining. It’s been raining all day. Tonight, the rain taps lightly on my bedroom window. Occasionally, lightning flashes followed by low rumbles of thunder. It’s a calm springtime storm in Texas. No hail. No strong winds. No tornadoes. There’s a risk for flooding…we might get 3-6 inches of rain by the time this storm system moves through tonight and tomorrow.

I hate springtime in Texas because the weather can be so crazy. Wylie, where the massive hailstones fell, isn’t far away, and of course, there was the tornado that hit my town in December. We never know what to expect with Texas weather, and it’s especially true this time of year. Down here, we are taught from an early age to watch the skies. When severe weather is near, the air feels mean, the sky looks angry, the wind blows sharp, and instinct tells you to hide.

Instinct is powerful. Instinct told me, over a year ago, the hard knot I felt in my breast needed to be checked. Yet, I ignored it. And, I felt uneasy for months. Then, I found out my instinct was right; consequently, the last eight months of my life have been some of the worst months I’ve faced in my thirty eight years on this mortal coil.

But, I’m still here. Scared. Struggling. Overwhelmed. Trying.

Once upon a time, storms really bothered me. I hated the sound of thunder. I was scared of it. “Don’t be scared of thunder, sweet baby, it’s just noise,” my parents and grandparents would tell me. “Honey, it’s just noise. Chill out,” is what A told me. Thunder scared me because it only comes with storms. You never know what to expect with a storm. I don’t like the unexpected. I don’t like surprises. But, tonight, as I listen to the rain falling, I’m not as afraid of the rumbles of thunder as I once was. I’ve always understood thunder is just noise, but some crashes of thunder can vibrate through a window, a car, a person. It can be felt deep inside.

Maybe I don’t mind thunder anymore because I’ve spent so much of the last eight months caught in a storm, a personal one, with effects as devastating as meteorological ones. There’s repairs for me to make. Somethings will never, ever be the same for me. The vibrations reverberate. Even if this cancer stays at bay, the damage is done. And, if it doesn’t stay at bay, if it does come back, or is still lurking, how well can I really repair myself?

I’ve learned to appreciate things more I didn’t really appreciate before…the sweet smell of bluebonnets (which didn’t grow much this year in my area), the delight on my children’s faces when given “just because” gifts, the soothing sounds of springtime rain, the wind coming through my open moonroof driving home blowing around what hair I have, the funny snores of my cats as they sleep, the way A reaches over in the night to settle a hand on my head, the flashes of light in the distance.

I don’t like the unexpected. I don’t like surprises. My life has become a saga of the unexpected. Nights like tonight remind me to find solace where I can, even if it’s in something I once feared because comfort can come from the strangest of places.

Even from thunder.

 

breast cancer, family, life, Uncategorized

Attitude

At some point around 2:00 pm on Friday afternoon, I settled back into my “I have no cares to give” attitude about my current status with breast cancer.

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Made with memegenerator

I really don’t know what triggered it other than I was sitting in the school library (my room was Antarctic, so we moved to the library) with a few of my sophomores (the rest had gone to a paid assembly) talking about the unit we’re starting (Night) and other random topics. As I settled into the discussion with my students, the feeling of having no cares to give about my breast cancer situation hit me.

It’s wrong to say I don’t care…I do care, but I just can’t handle my life revolving around it right now like it has for the last month and a half. I care about my life. I care about living…however long that might be. I’m tired of being Cancer Girl. I’m always Cancer Girl. I really want to tell Cancer Girl to go the f away.

I did that a little bit after I left work yesterday. I’ve avoided the color pink like a plague because the myth of pink makes breast cancer all better ticks me off to no end, but I’m going to a baby shower today for a dear friend who’s having a baby girl. The dress I bought for her shower makes me feel amazing and has hot pink throughout it, so I needed hot pink shoes. And, I needed to repaint my toe nails because they were blue, so I opted for a beautiful raspberry. What I forgot in all this is I like hot pink and raspberry. I look good in those colors, and dammit, I get to feel good sometimes, even if that means wearing pink.

I’m not wearing because I have breast cancer. I’m wearing it because it makes me feel good.

breast cancer, family, life, Uncategorized

Weary

I’m physically, emotionally, and mentally weary.

Radiation is done. I “graduated” from radiation today and got the certificate of achievement from my RO with the comment, “You really earned this.”

I woke up this morning to blood splotches on my night shirt. One of the burns is on my mastectomy scar…right on the scar. Apparently, as I slept last night, the skin split and bled on and off throughout the night. When I discovered it this morning, I lost it. Throughout this whole process, I’ve been told a burn on my mastectomy scar could be bad because there’s not a lot between the scar and expander, hence why I had so many breaks. I did everything I was supposed to do to avoid a burn there, but it happened anyway. So, as dramatic as it sounds, I stood in our bathroom and cried. Then, I semi put myself back together and went to work where a friend opened the floodgates again by asking me if I was ok.

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From Someecards…no infringement intended

How I made it through today at work, I’m not quite sure. My students knew something was up because they were unusually cooperative and considerate. I didn’t tell them, even when they asked. They know I’ve had a bad reaction to radiation with some significant burning….it’s hard to keep it from them unless I wear turtlenecks, which…no. I think most of them assumed I was having issues with my burns, which is true.

My RO looked closely at the burn on my scar. It’s not infected, but the fact it’s bleeding is concerning. He wants to see me again in a week to check my skin, especially since I have other areas of significant burning. I have to do everything possible to keep the burn on the mastectomy scar from worsening, and I have to do whatever I can to help it heal. If it gets worse, it will result in me losing my expander on the left side. I cannot handle that. So, I’m in bed with gauze pads coated in medicine over it, held in place by an Ace bandage since I can’t use tape or bandages to hold anything in place on my radiated skin. It’s too fragile right now.

I’m so tired. I’m tired of seeming dramatic. I’m tired of feeling traumatized, which may sound ridiculous, but truthfully, it’s how I feel right now. The last two months have been hard physically, mentally, and emotionally. Hell, it’s been physically, mentally, and emotionally hard since August. I’m just weary.

Tonight, when I changed shirts and found the burn on my mastectomy scar bleeding again, I told A I don’t know how much more I can take. He told me I have to start looking at this as a period of healing, physically and emotionally. He said I have to stop saying I have cancer and instead say I’m recovering from cancer. I told him I feel like no matter what I do, I’m always going to have cancer. He told me he would be shocked if I didn’t feel that way right now with everything I’ve been through over the last eight months. He told me we have to start taking some small steps to help me reclaim my life and a little normalcy during this period of healing.

I don’t know what that looks like. I’m too weary to figure it out right now.

breast cancer, life, Uncategorized

Sometimes I feel cursed…

No radiation on Monday. My skin is just too irritated.

Me, too, skin…me, too.

I figure today is another 50/50 shot on radiation. Dr. D promised me I’d finish this week. I just don’t know if that means Thursday or Friday. Ironically, Monday, yesterday, was supposed to be my last day of radiation. Today was supposed to be a celebration day.

Oh well. Nothing’s going to plan. Shocker.

When I was younger, I once told my grandmother I felt like God was playing chess with my life and I kept getting checked. She told me it wasn’t true, and I should cast my cares on Him.

My relationship with God is best described as…Relationship Status: It’s complicated. It’s complicated on my end. I still feel like my life is nothing more than a chess piece, and God keeps checking.

I can’t accept this is God’s Will and something good will come of this. Cancer has put my family through hell for going on ten years. My maternal grandmother died of an exceedingly rare form of melanoma when my daughter was five weeks old. My mom fought colon cancer. My dad has skin cancers. I have breast cancer. There is no history of these cancers in my family. None. No one on my mom’s side had colon cancer before her. My dad’s skin cancers are basal cell carcinomas. No one on either side of my family has ever had breast cancer before me. There’s no genetic explanation. My genetic tests showed no abnormalities. The majority of my grandparents and great-grandparents lived in their 80s and 90s. One of my great-grandmothers lived into her 100s. I assumed those genes were in me.

Guess I’m wrong…

Are we cursed? It feels that way…and, the thought that this is God’s Will and I just can’t understand the Plan makes me angry. What good comes from the possibility my husband could be a widower and single father? What good comes from the possibility my children could be motherless? What good comes from my parents possibly having to bury their youngest child? Did I just tempt Fate by writing this? I feel that way. I feel like I’m caught in a cosmic scheme of tests.

Someone once told me when I feel this way, it’s God testing me, and if I’m not willing to say His will, not mine, be done, I fail His test just as the apostle who denied Him.

Really? Then, wouldn’t that make my life a chess game, like I felt as a child?

I just want to live. I don’t want this to be my end. I don’t want to be as angry as I am…or scared as I am…or sad as I am.

I miss my life before breast cancer when I freaked out over new spots on my skin or had back pain. I miss me. I miss my family before cancer.

I’m over cancer…But, it doesn’t seem to matter. I reach my breaking point, snap, put myself back together, and I go on…to my next breaking point. Cancer doesn’t seem to care it’s changed my life forever. Fate seems to laugh at me and spin the wheel for Its enjoyment. God…well, again, it’s complicated. I truly feel by writing this, by expressing my feelings, my fears, my doubts, I’ll lose friends and maybe these feelings, fears, and doubts will be used against me.

People tell me all the time they’re thinking about me or praying for me. I’m grateful. I truly am. And, I don’t want to lose those expression of support because I’ve written this. I’m angry. I’m scared. I’m frustrated.

I wish I didn’t feel cursed.

breast cancer, life, Uncategorized

End in Sight

I have three radiation treatments left. Three. Provided my RO allows me to do treatment today, and I think it’s a 50/50 toss up whether he does. The burn worsened some over the weekend. It spread. I tolerate the burns with Domeboro soaks three times a day (morning, lunch, bed) and silverdene three times a day. And Advil. It sucks. The burns suck.

At least the one under my left tissue expander is better. The one under my arm worsened, and a new one appeared running nearly up to the mastectomy scar.

Fun times…

I can see the end of the road, though.

I have a feeling these will be the three hardest days I face as of lately. I’ve been warned the reactions will not magically stop after my last treatment. The reactions will continue for days…weeks. It will take months for the skin to really heal, and the skin won’t be the same. It’s going to be tighter and more sensitive. I’m going to have to be very careful with it. I have to protect it more carefully than before. I’ve heard the skin can be almost paper thin. I hope that’s not an issue.

What I really want is for this to heal quickly and just become another bad memory in a year of extraordinarily good memories and extraordinarily bad memories.

I want to find some peace.

This was never in my lens…on my radar…in my scope. Yet, for 1 in 8 women, this is our lives.

I ask A “why me? What did I do?” I know I did nothing, and as for why me, why anyone?

It’s just hard to handle on days where there’s pain and knowing more pain is in sight.

I may be three treatments away from ending radiation, but the pain will still be there.

It’ll just be hidden.