Recently, someone posed the question to Brian, “I don’t know you well, but I know your wife has cancer. What is that like, living with cancer?”
Brian struggled to respond, not because he didn’t know the person well and didn’t want to share. He struggled because he didn’t even know how to answer. How do you sum up life with chronic suffering? It’s a lot like normal life, we take the kids to school and do extra-curricular activities with them, we help them with their homework, we watch Bear play football and Ash and Bella run track, we work our jobs (although I have missed more hours), we share meals as a family, we go on date nights, we have weekend fun if we can, we took our epic vacation…we just live life. But it’s so different, too. How to even explain?
I’ve chewed on that a lot since it happened. What is it like to live with cancer?
How to even explain?
We’ve faced this for so long, it has become our normal life; that is, if you consider doctors every week and chemo treatments and days in bed normal. But we do work hard to make things as “normal” as we can for our family, for our sanity. But here’s a bit of what the normal looks like for us. (And yes, I just used the word “normal” four times in one paragraph. My grammar professors would shake their heads.)
Normal is losing one day a week to chemo. Every Monday I must find care for my children (all day during the summer, after school at times during the school year) while I see the doctor, have treatment, and come home and collapse, exhausted. Normal is them coming home to Mom in bed or asleep on the couch and taking care of themselves while trying not to wake me. Normal means three days of fatigue, nausea and loss of appetite among other nasty symptoms.
But…Normal is gaining lots more snuggle time. It’s curling up on the couch to help with homework, cuddled under a blanket reading or talking through tough problems they’re working on. It’s Bear showing up in my bedroom as I rest to flash that dimpled grin and say, “You need a hug!” and then being enveloped in the biggest “Bear” hug. It’s Ash bringing a book into my room to read with me. It’s Bella nestling next to me at bedtime, her face buried in my neck, then tears when she has to go to her own room, “Mommy, I just need more time with you.” Time is what we long for…
Normal is needing meals provided on chemo days and the day after, because I have no energy to cook. It’s leftovers nights and eating off of paper plates so we don’t have to do dishes. Oh, how I miss real plates (I know that seems small in the grand scheme, but I really do miss setting a nice table.) It’s cooking easy meals and wishing I had the energy to spend time in the kitchen cooking like I used to. It’s figuring out ways to make meals even healthier and pouring over cancer “cookbooks” trying not to obsess about one of the great joys of my life–food. It’s fighting the fear that every bite I put in my mouth is killing me (hello, inter webs with your mass of too much information in every direction), and clinging to truth that God has given us food for enjoyment.
But…Normal is seeing friends’ faces at my door as meals are delivered. It’s meeting new people who signed up to provide for us, because they knew of the need and wanted to help. It’s chatting for a couple minutes and catching up on bits and pieces of life before they head back to care for their own families. It’s gift cards in the mail from friends who couldn’t cook for us. It’s provision God gives us outside of ourselves.
Normal is going to the store and stopping halfway through wondering how I’m ever going to finish. How am I going to carry bags to the car and drive home? How am I going to put them all away when I get home? It’s leaving a partially full cart in the store and going home without groceries, crying over my weakness. It’s buying food in bulk so there’s less shopping to do then not having anywhere to store it when I get home and letting go of my nice, neat organized life (I let go of that a long time ago!).
But…normal is my mom and dad by my side faithfully helping with those needs. It’s seeing their faces at my door as they arrive to be chemo buddies and take care of shopping trips and housework and Daddy doing odd jobs to help care for our home. It’s long talks with my parents as we all wrestle with my diagnosis, this life we face together. It’s friends showing up at my door with dinner on a day “off schedule” because they knew it would be helpful. It’s being beautifully overwhelmed by offers of help, by “if you need anything, we’re there.” Side note if you’ve wondered why I haven’t called: Unfortunately, there are many times I’m too overwhelmed to even call, because I don’t even know what I need, but it’s knowing how loved I am, how cared for, how provided for. That impacts the heart!
Normal is living life in terms of withdrawals and deposits; it’s knowing that when I make a withdrawal on energy, I’ll need to make time to rest and deposit. It’s Brian’s mantra, “Our no is no and our yes is maybe” because we never know what life will look like from day to day. It’s sometimes making the “wrong” choice and paying for it for days. It’s often making the “right” choice and still paying for it for days.
But…normal is enjoying time when we choose to make those withdrawals. It’s sitting around a dinner table at a friend’s house or a campfire roasting marshmallows. It’s curling into a chair to chat and watch my loves play with their friends, riding bikes and building fairy gardens. It’s choosing to be together with my loves, knowing it will require time alone sleeping it off the next day. It’s friends who understand the slow pace of my life and allow for my weakness.
Normal is Brian working 10 hours days and then coming home to put food on the table and clear dishes and get children to bed. Normal is him leaving work early to take Bear to football then coming home to find his wife asleep on the couch. It’s working after everyone is asleep and the house is quiet so he can get up and take care of us all again the next day. It’s days where we don’t even get to speak to each other more than hushed, “Hellos, goodbyes and I love yous.”
But…normal is learning more about my husband every day. It’s watching him serve and shepherd us over and over and over again and never, ever complain (I do not exaggerate this… I’ve never heard a word of complaint about all that is on his plate.) Normal is bickering like every couple and working through disagreements and obstacles and figuring out life together. Normal is date nights and short walks together and curling up on the couch for a movie in which I fall asleep after about 10 minutes. Normal is falling asleep in the safety of his arms, content and thankful to be his.
Normal is watching my children struggle to accept that their mom has cancer, that this monster could take my life. It’s fear of leaving me because all too often they’ve seen that “something could happen” and watching them conquer that fear every week. It’s meltdowns over small things and wrestling to understand the good in the hard. It’s hearing them pray every day for mom’s cancer to go into remission, for us to believe even if it doesn’t. It’s hurting while they hurt and glowing with pride while their faith is deepened.
But…normal is going to football games and washing jerseys. It’s buying new track shoes and school uniforms. It’s catching up on their school days and helping with homework. It’s refereeing fights and being part of the fight itself. It’s holding arms out for forgiveness and feeling their forgiving arms around me when I must ask for theirs. It’s hearing Bella tell stories after play dates and listening to Bear’s antics with his friends. It’s deep talks with Ash-man about life and the future. It’s rationing video game time and curling up to watch Food Network together (and drool). It’s accepting that I can’t always be at games and track meets and school events, and aching in the acceptance.
Normal is going for scans and echocardiograms and trying to plan my week when someone else is scheduling appointments. It’s blown I.V.s and bruised arms. It’s waiting, constant waiting on results from treatment and scans. It’s taking deep breaths when another bill arrives and seeing the piles of papers and bills and “home” work that I need to catch up on cluttering up my desk and pushing them to the side, because “I’ll get them after I nap.” It’s a fatigue that is mind-blowing (a small example: you know you’re exhausted when the thought of filing your nails is too much) and feeling lazy when you see how dirty and messy your house is, but you literally cannot get up off the couch. Normal is leaving work early on bad days and having to deal with less hours.
But…normal is God’s constant provision for us. It’s bills being paid and insurance covering more than we expected. It’s hearing good news and hearing bad news and learning together on truth. It’s a good insurance plan from Brian’s work, that while often being a pain to get approval, covers more than enough for us to be able to handle. It’s others overlooking the clutter and dust when they visit. It’s days when the fatigue lessens (as my blood counts return to normal) and I cook and clean and shop on my own with my Bella girl as my faithful companion. Normal is working part-time for my church and being surrounded by co-workers who love me and pray for me and care for me, who allow for my weakness and understand my struggles.
Normal is a throbbing loneliness. It’s long, dark days unable to go anywhere except the cancer center or do anything except flop on the couch. It’s waking in the night while the darkness threatens to envelop and not wanting to wake Brian again to hold me. It’s wrestling through dreary days to cling to truth and not letting the lies of my past (oh, y’all, the church I grew up in left me with so much baggage, so many lies, such harsh deceptions) overcome. Far too often it’s losing the battle, feeling abandoned and weeping in fear of so. many. things. It’s knowing that there is a point where only I can walk through this suffering, and feeling very alone. It’s tears–a plethora of tears.
But…normal is being bolstered by the love, the prayers, the encouragement of friends. It’s texts and emails and letters of comfort and care. It’s burying myself in my Bible and words of truth written by others. It’s praying and praying and praying for God’s presence and comfort in the darkness and falling back to sleep in peace. It’s Brian and friends speaking truth to me over the lies. It’s friends understanding and not berating me for my struggles… not fixing things… not “singing songs to a heavy heart” (see Proverbs 25:20 “Like one who takes away a garment on a cold day, or like vinegar poured on soda, is one who sings songs to a heavy heart.”) or giving pat answers. It’s truth, poured over and over and over the flames of falsehood and it’s watching those flames die down.
Normal is constant hand washing and watching my children for any sign of a cold or virus. It’s avoiding crowds or taking major precautions when I do (Recently we watched the demolition derby at the county fair. We sat in the middle of a bunch of our friends and I spent the entire time with either folded arms or arms on my lap. We waited until the crowds had dissipated before we left the stands and then I doused myself with hand sanitizer just to be on the safe side. Sometimes I even shower after I’ve been places.) It’s having several doctors’ numbers memorized and medications in my purse. It’s trying not to pull back when someone gives me a hug and feeling rude and asking “Do you have a cold?” sometimes before I accept that hug.
But…normal is letting go and trusting, knowing that I can’t keep away every germ or virus. It’s accepting hugs when I am healthy and my blood counts are good and it’s being okay with having to say “no” when my counts are low and I’m neutropenic. It’s wearing masks in public and playing “good guy, bad guy” games with my kids. It’s being cautious but not compulsive. It’s knowing that every germ is in God’s control, too, and as one of my chemo nurses told me, “We want you to live your life, so go… have a good time. You know what to do to protect yourself.” So I do. I live my life.
I could probably go on and on and on, explaining, but I guess that is what it boils down to.
Normal is letting go and trusting as we live our life.
We don’t know what that living will look like from day to day. We don’t know what I’ll miss and what I’ll be able to be part of.
But we live. This life.
For this is the life God has given us.
Is it hard? Yes.
Is it excruciatingly painful? At times, yes.
Is it overwhelming? Yes.
Is it isolating? At times, yes.
Is it exhausting? Yes.
Is it normal? For us. Yes.
Is it wonderful? More often than not. Yes.
Is it life? Yes.
This life. Our life. Together.