Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, December 01, 2015

The end of a season

Do you know what today is? Well let me tell you! Its the end of the season of my life called "cancer".  Yes, I finished treatment ages ago (16 months ago, in fact), but I've still been dealing with this stupid reconstruction process. 14 months ago I had a bilateral mastectomy, and today I'm in surgery, having my horribly uncomfortable tissue expanders removed and replaced with implants. Also, because of the way breast reconstruction works, it also involves liposuction at the sides of the ribcage to even everything out.

Looking back at the last 20 or so months since I was diagnosed, there are some things I wish I had known. Here is a letter to that self.

Dear Me,

Today you were told the worst news you've ever heard in your life. You have breast cancer. You felt your knees give out beneath you as you best friend and life partner held you up. You sobbed the longest, loudest sobs. As you cried, noises escaped from your mouth you didn't know were even possible. Primal fear. What you are feeling now is primal fear.

I'm not going to tell you, "Don't worry, you'll be fine." because its impossible to not worry. You're going to spend the next few days (or even weeks or months!) numb. You will think you're losing your mind because you keep forgetting odd little things and can't concentrate on anything. Its ok. You're normal. Your brain is on overload and it can only process so much right now. Remember that primal fear? This is part of it. You are in survival mode. Don't worry about the laundry right now. If it doesn't get done the world won't end, but if it helps you by all means do it.

Start a list of questions for your doctor. Even if they seem silly, write them down.

Do NOT, I repeat DO NOT set any kind of timeline for when you'll be done with treatments and/or surgeries. There is no way to predict how each woman will respond to various steps in the process and its easy to get disappointed when your treatment or healing doesn't go according plan. Mine was supposed to be a "three month speed bump" in my life, and here I am 20 months later, just finishing up. Don't count on "you won't need chemo" or any other treatment predictors until EVERY test has been completed.

Everyone is going to send you emails and private messages with the most outrageous "cures" for your cancer. Use your "delete" button generously. Everyone means well and only want whats best for you, but they forget your doctors spent years in medical school, and more years treating other women just like you. He or she knows the latest TRUE research. Listen to your doctors, but if you don't feel comfortable get a second or 3rd opinion.

Nipples aren't necessary for life, and if you don't have them there is no "show through" so no need to wear a bra. Oh, and you can buy nipples online. For real. You can order any color you want.

When something doesn't sit right with you, trust your gut and ask questions. Remember that you are your own best advocate. If you don't feel comfortable speaking up, have your partner help you.

Speaking of your partner, he's hurting too, in totally different ways. He's scared to death about losing you. Suddenly the weight of the entire household is on his shoulders. Remember to encourage him to take a break when he needs it. Spending a few hours with his friends or brothers can make a world of difference for him.

Sleep. Sleep and don't feel guilty for sleeping. Your body needs to regenerate healthy cells and the rest of you needs to rest while that happens.

Everything tastes bad when you're on chemo. Moutain Dew will taste like salt water, but banana cream pie blizzards taste heavenly. Oh, and Jimmy Johns delivers to the chemo clinic.

In the coming weeks you're going to be very run down. Try to organize your house in such a way that if someone comes in to help, its easy for them to see what needs to be done. Let go of your need to control all things, even if that means turning on the white noise machine in the bedroom so you can't hear whats happening in the rest of the house. Resist the urge to take over. RESIST!

Don't try to potty train a child during chemo. Really, its a terrible idea.

You may look at your body and hate every scar, or you may embrace them as badges of honor. Whatever floats your boat, but do not EVER be ashamed of those scars.

Let the kids do washable marker art on your head. It feels awesome and they have a blast.

Steroids really do make you crabby. When you notice you're snapping at people, its better to just excuse yourself for a nap.

Chemo brain is a real thing. Unfortunately sometimes it sticks with you long after the chemo is complete.

You have a long road ahead of you. Right now you're trying to see into the future and its just plain impossible. Try your best to live for today. Notice the smiles on the kids' faces. Notice when they seem worried or anxious. Take the time to give them an extra hug. Let them sit on the bed with you and watch movies while you nap. Let them take care of you in their own ways. Its really important to them.

You don't need to make excuses to anyone. When you feel tired, its ok to say, "You know, I know you wanted to have coffee today, but I'm just too tired to even listen to talking, much less get out of bed."

Its ok to complain, and its ok to cry. But, if you're feeling overwhelmed by it all, its also ok to talk to your doctor about a little pharmaceutical help.

Just say "No" to Effexor. Its terrible to get off of!

If you're sitting in the warm summer sunshine shivering, take your temperature. You're probably running a fever. Likewise, if you feel you can't make it up a flight of stairs without sitting to rest, its time for some IV fluids!

Take care of yourself however you feel is right for YOU.

 A lot of you reading are cancer survivors yourself. What would you tell yourself on that day you were diagnosed?


Lisa Riley said...

What would I tell myself? I'd say, "You're one hell of an actress!" I already knew, and was just waiting for the final confirmation call. I knew when the mammo tech wouldn't let me see the films like they do every other year. I knew when I got a call 2 days later to come back for follow up. I knew when the ultrasound tech and radiologist then repeated the ultrasound...and then the radiologist said, "I can't say 100%, but that's an extremely large mass, and I'm 95% sure that's a malignancy. We're sending you for a biopsy."

So I was only waiting for the phone call, and I continued to work. The phone call came in the middle of a challenging class, and I stepped out into the hall. I took paper and pen with me (probably the last smart thing I did for several days) and I wrote down what the doctor told me. I then called my husband, wiped my eyes, and walked back into my room, picked up my lesson, and carried on for the remainder of the day. The kids had no idea I had just been leveled.

What would I say to others? Be kind to yourself. Keep your head up. Nothing that you ever did created this cancer. Be positive. The attitude is key. Let others do things for you. Listen to your body. If it says stop, do so. If it says don't eat (or do), listen! Fluids are key...and fevers suck. Buy a good temporal thermometer. It'll be a good resource at 3 am. Most of all, continue to love yourself. Whether you choose to reconstruct or not, love yourself. You are not your boob. You are you, a wonderful woman. You have people who love you for you, not your physical appearance.

Will I reconstruct? Perhaps. It's been 9 months. 9 months on Thanksgiving Day. The scar is settling into's flatter and more solid than it was. The prosthesis works. It's damn cold some mornings doesn't want to move with me.

Most of yourself. Love your partner. They are hurting too. They're scared, worried and not about to tell you. You have enough on your mind.

Unknown said...

First of all, I just want to say that I had the same procedure you're about to have today exactly one week ago, and removing the tissue expander led to an immediate increase in comfort. The lipo hurts so much more than the incision on the breast. Best of wishes to you for a speedy and smooth recovery.

Looking back to the day I was diagnosed (about 9 months ago), at age 31, I would tell myself that it's really ok to be vulnerable and open to the people in your life who love you. It's ok to tell them you're scared, it's ok to ask for help and to be a "taker" rather than a "giver" for a while. It's ok to not always be able to be kind to folks, to feel hardened to the world and bitter for a little while, but when there are breaks in those clouds, take them and shine as much gratitude, compassion, and understanding back at the world.

My diagnosis was 9 months ago, and I still very much feel like my life is on pause, in limbo, uncertain. Remembering to just be in the moment, and not try to predict or control the trajectory, is useful, but must also be balanced with some sense of hope and forward-thinking.

Take good care,

Sandra Asher said...

It's ok to NOT be strong. People will say how much they admire you because you are so strong and how they don't know how you do it since they couldn't imagine handling cancer like you do. After a while, you feel you must hide your true feelings rather than disappoint all those who praised you for your strength. Maybe you don't feel strong at all and feel you must cry in secret. Don't let this happen. Cry. It's ok NOT to worry about how others will feel if they see your fragility.

Rest. Sleep and rest some more. If you want to get better, you MUST rest and let your body heal itself. No, you don't need to do that laundry or those dishes. You need to rest. That's your job for now.

Other people will send you all kinds of religious memes at a time when you might feel like God has deserted you. Why did I get this? What did I do to deserve this? It's not fair! I'm a good person. The truth is that I was mad at God and didn't want to hear how everything would turn out fine if I just had faith. The worst was when people would say, "Everything happens for a reason" and how God has a plan. Really? What was the reason? Am I'm supposed to just sit peacefully, not worry, and wait for the details of the plan to be revealed to me? Sometimes people will make you feel bad because you don't have faith 'cause if you did, you would feel peaceful and not worry. People mean well, but be prepared for comments that will hurt you and not help you.

Hang in there. It's going to feel like you are pushing a huge boulder up a steep hill. Sometimes you will make a little progress and then fall back. It's easy to get discouraged. But keep pushing. It's worth it. Believe me. I've been there. I had a double mastectomy which went fine except for the hospital employee who didn't sterilize the equipment well enough or who missed a step in their "scrubbing" for surgery. Within two hours I had a fever due to an antibiotic resistant staph infection which would run rampant for three days until a treatment could be found to slow it down. I lost three muscles and all the soft tissue on my left side & left shoulder and went through 5 more surgeries in the next 15 months. I finished surgery #6 the week before Christmas last year.

eliz said...

((((((BIG HUGS))))))))) continued prayers

Unknown said...

Oh my gosh, I am just in awe of your storytelling and your Strength - I found your blog last year from a link you dropped at and really enjoy your writing, especially about the kids. Anyway, I clicked on the bookmark today and read about Angela's fall adventure, thank God for the voices in our heads urging us to check on people or things, the voice that tells us when something is wrong. So relieved that you have a diagnosis and hopefully your sweet girl will mend soon.
I'm glad to have rediscovered your blog, you have just a way the pen, and your heart must be 3 sizes big. BTW, I opted not to have reconstruction and was actually on BCO today reading the threads, just catching up and looking for information about/feelings toward reconstruction or just letting it be...for now, I'm just happy to be I think, but it's good to know I can change my mind.