A Spring of Joy

Bear was my sous chef tonight. He wanted to help me because he knew how tired I was. His heart is enormous!

I cherish watching him inhale spices and exclaim over their marvelous scents. “Mom! This onion powder smells amazing! Mom, I feel like I’m in Italy with this oregano!” He blended dressings and compiled spice rubs and mixed together veggies and shredded cheese. I love watching him grasp how wonderful it is to create your own foods rather than just pour something from a pouch or a box. (An aside for any moms with young children out there–I find my children will eat the foods they were able to take part in making. I know it’s more work, and definitely more mess, but it’s so worth it. It doesn’t always work, but it’s helped teach them a love for all kinds of cuisine!)

We inhaled supper tonight. It felt so good to cook our own food. I’m beyond thankful for the meals that people bring, for the gift cards y’all have given for nights when I can’t cook. We have had several of those these past few days, and Bri has needed to use them! One of the things I miss most about my days is cooking for my family, so tonight was a gift, too. As we were clearing the table Bear said, “You know, imagine if you were back in time somewhere like Egypt or something and suddenly someone from the future came and shared this supper with them. They’d be like, ‘Whoa! That food is amazing!’” Oh, how he makes me laugh.

I was able to go get a trim today, too. I haven’t had my hair cut in a while; it just hasn’t been growing. It was relaxing having someone else wash and dry my hair. My stylist works specifically with cancer patients to help them with thinning and damaged hair. He has such a heart for us to be able to feel good about that part of our femininity, and I’m so grateful.

We read together as a family after supper tonight. In fact, we ate together tonight. I hadn’t been down to the table in a few days, so that was another gift. And then I read aloud our book we’re reading while they finished up seconds and thirds. They shared bowls of ice cream and helped clear the table. Then Bella girl read aloud the book she’s reading in school while Bear and I made an apple cinnamon oatmeal for me to bake in the morning for their breakfast.

I am stronger today, but still having pain. My blood counts were low this morning when I went for blood work, so I have to be careful of germs. And I fatigue easily. But all this… the “normalcy” of this day was beautiful.

Bella’s curled up reading now while Bri and Bear play guitar together in the living room. Ash is on his laptop working on homework in the den and Coop is sauntering from room to room trying to decide who he wants to be with. The dishwasher is humming, a candle glows on my windowsill, and a chocolate decaf coffee sits in a mug next to me. That mug has a verse on it, “He fills my life with good things.”

Yes.

Yes, He does.

Today is one of those days where I can’t seem to staunch the deluge of tears. Every little thing sets me off and sometimes nothing sets me off and I just cry and cry and cry. My body is in so much pain today, and with pain of the body there is often pain of the heart and soul and mind. It’s the melancholy in me.

I’ve had a good weekend… my kiddos were home from school half day on Friday which I love, love, love. Bella girl brought home a friend for a sleepover and oh, y’all, the giggling and the girliness and the beautiful friendship. I drove them to Michael’s craft store to treat them with fairy garden supplies, and we laughed and shopped and picked out hats and ribbons and finally I was told, “Get me out of here, Mrs. D., before I ask you to buy me the whole store.” We schemed and designed and planned for future sleepovers and Christmas crafts, then we drove home with music blaring and sweet voices singing along from the back seat.

Home found us digging through my craft box and then the quiet of the afternoon as I napped while the boys read and played Legos and the girls designed beautiful fairy gardens. I baked them butterscotch bars and then failed miserably on dinner while I tried to substitute the wrong kind of ham and the wrong kind of cheese in my broccoli bake, but they were all so gracious with me. After supper there was Mario Kart and reading by the fire with my Bri, Coop at our feet. Bedtime was early for me with my pain, but Bri made sure the girls got tucked in and tended to all the things that needed tending.

The girls rose early and snuggled under blankets to watch Tinkerbell. I got up and sat by the fire with my Bear as we waited for friends for him. He spent the morning at a walk-a-thon fundraiser and had a wonderful time. Breakfast out and a “proper” tea party and a dance party in the bedroom found the afternoon coming too quickly and the sadness of their parting struck a chord in me. I thought of all the sleepovers I’ve shared with my childhood friend, Monica, who has just had yet another surgery, and the longing welled. I am missing her 40th birthday party next weekend, because there is just no way for me to make it happen in the midst of my treatments, and my heart is so very sad.

Saturday night I questioned whether or not I’d be able to join my family out for Halloween. Every year we celebrate with friends downtown. I helped my Bella-girl get her Anne of Green Gables costume on and the sadness in her eyes when I mentioned not going broke my heart. I took some pain meds and pushed through, and it was yet another special evening. Unable to walk in the neighborhood with my loves, I sat on the porch and chatted with the other ladies and handed out candy, drinking my Earl Grey Tea, and enjoying the crisp Fall evening.

This morning when I woke, my pain was decidedly worse. I sent my loves on to church and hunkered down in blankets and pillows and books and my computer and my stationery. And I cried. A lot. My mind gets so jumbled when my body hurts so badly, and the collision of mind and heart is chaotic.

I cried reading articles online because people can argue so poorly and I don’t like confrontation anyway, but it just gets so hard to wade through all the opinions and the anger and the “I’m right and you’re wrong” when the areas are often so gray. I cried reading Facebook statuses, because we can be so quick to judge others and see only our way. I cried writing notes to friends who are hurting, and I hurt, too, because I want the pain to just go away.

I cried listening to an online sermon from my friends’ church in Nashville because the truth was exactly what I needed to hear, and I cried listening to the music they sang before the sermon, because it echoed that same need. Then I missed my friends in Nashville and I cried some more. I cried because as Kendra said last night while we sat around eating chili and cornbread, “There’s nothing like college friends, eh, Ang?”

I cried because I didn’t want Bri to be at church, I wanted him home holding me. And I cried because it was such a sweet weekend, and I really have so much to be thankful for and I didn’t want to be crying. I cried because I knew Bri would come home from church and ask what he should fix the kids and I didn’t really have anything easy for him to make. I cried because I’m tired of clean eating and I really just want a bloomin’ onion or some Chinese food, and I’m tired of worrying that everything I eat will feed my cancer and help it kill me.

Then when Bri came home I cried some more, and he held me and then he fixed the kids grilled cheese and went out to work on his car.

Bella girl is writing notes now and tromping around in my boots for fun and Ash-man is watching football and Bear is curled up next to me working on homework, and the weekend is still sweet even in the midst of pain.

I’m really not sure why I’m sharing all this here. None of it is deep, but all of it is real. It’s just more of life. It’s hard and it’s beautiful, yet it’s easy to look at the problem and forget the promises. But even in the midst of pain, I know the promises are true. And we hold to those promises, and we laugh and we cry and we live.

“Live to the point of tears.”
(~Albert Camus)

It hurts.

It hurts to sing.

Sometimes physically, but not usually. The speech therapist has said the best thing I can do is talk…use the vocal cord that works so it stays strong and perhaps will even strengthen. So I talk. And it croaks out, some days husky and hoarse, some days squeaky and mousey and reminds me of a witch.

And it hurts.

My heart.

It hurts.

It hurts when the radio plays or iTunes fills our home. It hurts when our favorite songs come on and I try to sing along while we dance in the kitchen.

It hurts when I’m in the car and the Broadway channel pops up with a favorite song alert, and The Sound of Music fills our car, but there is no music from me.

It hurts when Bri is harmonizing to The Steel Wheels and I try to join in, but only whispers squeak out.

It hurts when I snuggle with my Bella-girl and we sing together before bed.

It hurts every time I stand in church. Every. Single. Time. When I stand to sing with hundreds around me and I must either whisper or mouth the words.

It hurts, y’all.

It hurts so bad.

It hurts when my children are learning a new song and they can’t find the tune, and I cannot help them.

It hurts that I cannot teach my children how to sing.

It hurts because I forget.

It’s been almost two years and still I forget. I open my mouth to sing fully expecting a rich, strong alto to fill the room and instead something akin to a frog’s chortle erupts.

It hurts so bad, y’all.

It hurts to think I cannot sing with my Brian. Over twenty-five of our friends have blessed us with the gift of singing to Jesus for them in their weddings. And we’ve sung for church countless times… not to mention sitting next to him every week in a row a church and longing to join him..to join my loves next to me–Asher’s exuberant song, Bear’s Vienna Boys Choir melodies, and Bella’s sweet soprano…

It hurts that I work for our worship pastor and every week I prepare music for a service in which I cannot sing.

It hurts, y’all.

It hurts so bad.

I miss my voice. I hate the cancer that has so cruelly stolen it from me (for those of you wondering, there is a tumor that is pressing on my laryngal nerve and has paralyzed my right vocal cord). I long to sing again. It’s an ever-present ache that becomes yet another, “Please, Lord?” that I offer to Him along with the plea for my life… for one more day with my loves.

It hurts.

Music has been a defining part of my life for decades. Using my voice in song has been a huge part of that; this loss has been devastating.

We all face deep hurts, I know.

This is one of mine.

It hurts, y’all.

It hurts so bad.

It hurts to beg and still receive a “no” as the answer. It hurts to hold this open-handedly. It hurts to submit to God’s will for me in this. It hurts to choose quiet worship when self-pity is so much easier.

But this part.. this choosing to still sing to Him even with a croaking voice, this choosing to submit, to hold this to Him with open hands… “My voice is Yours, Lord, use it as you will.” They are hard words to utter. But in the beautiful mystery of God’s sovereignty, submission eases the pain some.

And so I croak. I squawk to the radio and I whisper with my co-workers during worship at staff meeting and I mouth the words at church with tears streaming down my face, because whether or not my voice can sing the tune, the words don’t change. The object of worship doesn’t change. He is still worthy, and I am still His child, loved and delighted in by Him, and I am still called to worship.

And so, I sing in my weakness.

And it hurts, y’all.

But it doesn’t hurt quite so bad.

“9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 10 For the sake of Christ, then, I am content with weaknesses…For when I am weak, then I am strong.” (2 Corinthians 12:9-10)

Yesterday I was sitting in the cancer center (also known as my second home) waiting for them to take me back for blood work, when the nutritionist on staff walked by me. She smiled and stopped when she saw me and greeted me asking how I was doing.

She remembered. She remembered sitting with me a year ago and discussing ways I could work with nutrition to help strengthen my body. She remembered I had studied health and nutrition in college. She remembered cookbooks and recipe websites she had recommended for me. She remembered my name. She hadn’t talked to me in a year.

We chatted about where I was with treatment and how I was feeling. I shared with her how overwhelmed I can get trying to maintain a healthy diet (making everything I eat from scratch) and feeling rough from chemo. I told her that on my good week each month I work to stock up my freezer with things I can pull out and eat when I’m not feeling well. She listened. She understood. She offered some suggestions and short cuts and she pointed me to a couple places in the area that serve locally grown, grass-fed, organic foods.

While we were talking, the nurse came out to take me back to the treatment center, and when she saw us talking, she told me to take as long as I needed. “You know the way,” she laughed, “Just come on back when you’re done.”

The nutritionist and I finished up with her offering to do some research for me and see if she could come up with some other good ideas and she’d email me with what she found. I thanked her and made my way through the halls to the short treatment center, greeting nurses by name and stopping to hug one of my favorites. The nurse took my blood, I got the thumbs up from her once the results came in and I was on my way for the day.

Later that afternoon an email came through, and y’all, I was blown away. Not only did the nutritionist give me a plethora of good information on places to find foods and convenient options for my bad weeks, she called several of them to ask questions, confirm information and relayed that information to me. And it was useful, wonderful information. This morning, there was a second email from her with another thought she had.

I know this doesn’t seem like much. It’s just emails. I guess I wrote this to remember. To remember why I love the cancer center here. I love the familiarity of nurses and desk staff and volunteers who know my name and I know theirs. If I have to go through this, I’m thankful to go through this somewhere that treats me like family and not like a number or a statistic.

People have asked me if I’ve ever thought of second opinions… of going over the mountain to the university hospital or even further to a big city that specializes in cancer treatment. There are a few answers to that. My cancer isn’t far enough along to warrant a treatment center, but we have it on the back burner as an option should things progress. The treatment I’m receiving is protocol across the board. I’d receive the same chemo and scanning, etc. over the mountain as I am receiving here for where I am. And that hospital over the mountain? I’ve been there for several things over the last eight years with the course of my treatments, and almost every time has been a bad experience for me. Here at my local hospital, I’ve had one bad experience in eight years. That’s enough for me at this point. We keep our options open, and we always will…

But I’m just grateful today. Grateful that my name is known. Grateful for advocates for my health in every arena. Grateful that there are places in town where I can grab a bite to eat and not stress. Grateful that in the overwhelming there are those who move to help.

Grateful that even somewhere sterile and cold like hospitals can be, there is warmth and kindness and love.

“Cancer changes your life, often for the better. You learn what’s important, you learn to prioritize, and you learn not to waste your time. You tell people you love them. My friend Gilda Radner used to say, ‘If it wasn’t for the downside, having cancer would be the best thing and everyone would want it.’ That’s true. If it wasn’t for the downside.” (~Joel Siegel)

October.

I have a love hate relationship with this month.

Everywhere I look there is pink and a reminder of breast cancer awareness. I’m pretty sure after years of pink washing, we are all pretty aware of breast cancer. One in eight women or men will be diagnosed with it in their lifetime. It is hard to find a person who is not touched by this monster–moms, sisters, aunts, daughters, cousins, dads, brothers, sons, uncles, friends. We know it’s out there. But how much do we really know about it? (And don’t even get me started on how very little information is out there about metastatic breast cancer!)

I can get frustrated with what seems to be the glorification of this disease, the romanticizing of it. It’s everywhere.. movies, tv, books. I’ve watched and I’ve read, and as a multiple survivor, believe me, it’s rare to find a show or a novel that accurately depicts what it’s like… or at least what it’s been like for me. Our society tries to make breast cancer beautiful. Trust me, it’s not. It’s full of scars and needles and humiliating experiences and toxic chemicals and vomit and pain and exhaustion and numerous other effects. It’s not a beautiful disease. And I know there are thousands out there who are affected by other forms of cancer… by other diseases… No disease is beautiful.

I struggle with the trite mottoes and Facebook memes that sexualize and trivialize it. I struggle because it becomes so “in your face” that I wonder if it really gets in peoples’ hearts.

But at the same time, when my boy runs out onto his football field in Knights black with his pink socks on, I am extremely proud. And I see the beautiful in this ugly disease. Thus, the love-hate relationship. Because, when the boys on his team ask him why he wears so much pink, he says, “Because my mom has had cancer five times and has breast cancer now.” And those boys don’t know what to think or do or say. It hits close to home when it’s one of your friends. And my Bear is proud to wear that pink. He’s proud to follow the example of the NFL and make others aware. He’s proud to support his mom.

I’m thankful for that. I’m thankful for the people who want to make others aware. I am grateful for those who are seeking to find a cure, for those who are remembering and raising money and running races and memorializing and celebrating and grieving. I love this quest, this cause.

I find myself on both sides of the fence–bemoaning the pink everywhere, yet rising up to defend it when the insensitive comments come. Some of the stuff I’ve heard, y’all? Sometimes I want to look at people and say, “You do realize I’m standing right here with breast cancer, right?” *deep sighs* It’s another opportunity to show grace.

I struggle because I stand in line at Target and hear two guys behind me laughing and coarsely joking about how important it is to “save the ta-tas” for them, and I want to whip around and fiercely castigate them for just not getting it–this brutal disease that mars bodies and destroys people. I want to preach to them that it’s not about saving the ta-tas. It’s about saving the lives that belong to those ta-tas.

I struggle because breast cancer is not the only cancer out there. I have friends with lymphoma. I have friends who have survived kidney cancer and children’s cancers and Hodgkins and prostate cancer and leukemia. I have friends who have lost parents and grandparents and siblings and friends to this disease. Where are their months? Who is remembering for them and walking for them and raising money for them?

My emotions and mind and heart are always a confused jumble this time of year. I struggle.

But I also wear my pink ribbon proudly and I cry when friends write and say they’re wearing pink for me or dying pink stripes in their hair in my honor or wearing their “Fight Like a Girl” tee-shirts. I value each token of remembrance and celebration.

Because while I may struggle with how things are done or brought about. It still all means something.

It means cancer is being fought. It means people care.

And people caring?

That helps make the disease beautiful.