Ready or Not

About a month ago, I hinted at newsNot as joyous as a birth announcement but equally momentous. I think that’s what I said. Or something like it.  I wish I could say it’s a finished manuscript, a new house, a book deal, a fresh opportunity for ministry I’m announcing. Perhaps that last is somewhat true.

I’ve thought about writing this post, tried and couldn’t get started. I realize there’s no easy way to share this kind of news. Especially at Christmas when we all have our own joys and cares, and it’s hard to have to shoulder somebody else’s. Then again, I’m not sure there is ever a good time for this sort of thing, and well, I just wanted you to know.

In August, my 31-year-old husband was diagnosed with cancer.

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There are many things I could write about this journey so far. The shock of the discovery. The whirlwind tempest of surgery, pathology, and the speedy nosedive into chemo. I could write about those early weeks, when we had BIG decisions to make – which doctor, which treatment, which drugs – and not nearly enough information to feel confident in making them. How we read online medical journals until our eyes crossed and our heads hurt and how in the process we became intimately familiar with such intimidating phrases as histiologic nonseminoma, radical orchiectomy, and retroperitoneal lymph node dissection. 

I could write about the initial fears – the horror movie that played in my mind as I cared for my children, grocery shopped, limped through ten solid weeks of morning sickness, chatted with friends and said nothing – the realization that I could be looking at living thirty, forty, fifty more years without him by my side, and what does one do as a widow with five children to raise and no work experience to speak of?

I could write about all this and more, but it occurs to me that the one thing I want to say today is PLEASE. Please, try to understand.

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Understand that my husband’s diagnosis is not uncommon. He is not “young” for this. In fact, more than half of all testicular cancer diagnoses will be given to men between the ages 20 and 34. The next most common group is age 15-19. It is rare to receive a testicular cancer diagnosis over the age of 40.

Please be aware that, although testicular cancer is still considered rare, it is sharply on the rise. Especially in the United States and Europe. Especially for white men. Please, ask the men (especially the young men) in your lives to perform monthly self examinations. This is how my husband knew to seek treatment. Early detection is everything in testicular cancer. A Stage I diagnosis raises your chance of survival to 99%. It drops exponentially with each stage. (Stages are determined by whether and how far the cancer has spread).

Please understand that testicular cancer is not a “good cancer.” I can’t tell you how many times I have been told how “lucky” we are that my husband “only” has testicular cancer. Yes, as cancers go, TC is highly curable. For this, I am grateful. But it is still cancer – and cancer, all cancers – are dangerous. And scary. None of them are “good.”

Because of his diagnosis, my husband is now twice as likely to get a second cancer diagnosis. After receiving platinum-based chemotherapy, he is at increased risk for pulmonary complications, early heart disease, and numerous other side effects, including leukemia and lymphoma. Our sons, too, inherit an increased risk of facing a TC diagnosis. Then there’s treatment. Chemo is no picnic. The surgeries he may still face are associated with some very nasty, life-altering (and sometimes life-threatening) complications. For those who are fortunate enough to survive cancer, the journey to survival isn’t easy, and it isn’t quick. It leaves scars – physical, emotional, mental, spiritual.

Cancer changes your identity.

This is something I never realized, that there would be a before and an after to our lives. Before and after diagnosis. That one slip of paper would change our lives forever – would require me to wrap my head around the fact that my husband – this capable, healthy, active man, this father of five, my husband – is a cancer patient. That (if all goes well) ten years from now, he will be declared a cancer survivor. That cancer will forever be a part of our lives, always on the radar.

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Please understand that because things are going well does not mean they are over. 

This has, perhaps, been the hardest thing for us to convey to our loved ones. Understandably so. They want things to be okay. They want him to be well. This is what all the hoping and praying is for, after all: a clean bill of health.

After surgery and two cycles of BEP (bleomycin, etoposide, cisplatin) chemotherapy, my husband has moved into surveillance mode. This means bi-weekly blood draws to check his tumor markers and monthly CT scans of his abdomen and x-rays of his lungs to ensure the cancer hasn’t spread. It means continual exposure to further radiation, further cancer risk. It means every 7-14 days, the bottom of my stomach drops out as we wait for the phone call that tells us whether more treatment is about to turn our lives inside out again, or whether we can breathe a little easier until the next scan, the next draw. The next bullet in the dark.

If you can, please understand that this journey involves grief.

Whether my husband lives or dies, cancer has taken something from us. It has stolen our youthful confidence in our own health. It has robbed us of the belief that if we eat healthy enough, stay fit, we can have any control whatever over these mysterious bodies of ours. It has overshadowed the joy of finding out we were pregnant with our fifth child. It has put our life on hold for four agonizingly long months. We are still in holding.

No, we are not living in a constant state of anxiety. Yes, we are trusting in the God who loves us. But – NO – I am not ready for him to die. I am not ready to say good-bye to my best friend. I am not ready to be a widow. I was not ready to step into the role of full-time caretaker for my partner, my protector, while juggling the demands of caring for our four young children.

Yet, ready or not, willing or not, this reality lives with me, beside me, undergirding the everyday, which (believe me) has enough cares of its own. In so many small ways, cancer has transformed our lives. It has wrested all semblance of control from our tight-clenched, trembling hands.

I thought I knew what surrender was. Now I know that I never had the slightest inkling of how deep, how wide-reaching, how all-consuming it could be.

Please understand that we may not grieve the way you expect. 

There are days when I know what I need, and I can ask. Then there are days when I can hardly breathe because I’m drowning. My head spins, and nothing makes sense. There are days when I’m terrified to make plans, even for tomorrow, because I am raw in my awareness that tomorrow is not mine to anticipate. Dear friend, please understand, I’m not trying to blow you off. I’m just too tired, too worn out with hoping to invest one more ounce of it into a play date, a night out, a happy tomorrow.

There are days when I will cry, and there are days when I will be blindingly angry that this is happening to our family. There are days when I am maxed out with pain, and I won’t know how to handle yours, as well. I’m so sorry. It’s not that I don’t care. It’s just that I’m already beyond the end of what I thought was possible. Please understand that I still love you. I just need more than I can give some days.

Please understand how much we need you. How much we appreciate every prayer, every hot meal, every offer of support – even the ones we don’t accept. Even a simple text to check in on treatment days has made the difference between me falling apart and me believing we are not alone. Even the texts I never returned.

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Please know this is not over.

The journey has only just begun. I’m praying it ends happily, but I won’t lie. It’s unlikely to be a smooth road. I can promise, we’ll be fighting. If you’re willing, if you’re able, we’d be honored to have you on our team.

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Photos by Brea Bursch Photography.

16 comments

  1. Jessi says:

    I’m so sorry to hear about what your family has been going through, but thank you for sharing with us what you have. You and your husband will be in my prayers.

    Jessi

  2. Katie McCarthy says:

    Sending you all so much love, Bethany. Thank you for sharing so beautifully about your journey and the journey to come. We love you! Xx Katie & Patrick McCarthy

  3. Lea says:

    Oh, Bethany.
    We will be praying for you, your husband, your family.

    When I was 15 one of mom’s 4-year-old Sunday school students was acting out so badly she had to talk to his Mom. This Mom dissolved into weeping mess because they had just received the same diagnosis – with three children under 6 and a baby on the way. I spent more hours that summer babysitting for free so they could go to Doctor appointments without taking the babies. If I lived close to you, I’d do the same. Unfortunately, I live in Minnesota so I’ll pray instead.

    Lea

  4. Ceal Prizer says:

    Dear Bethany;
    Wanted to let you know that I will keep you and your family in my daily prayers for strength and healing during this difficult time in your lives. Keep Him before you and know that He is closer to you than your own skin. Love & prayers, Ceal & Lorry Prizer

  5. Sarah Hinde says:

    Oh Bethany! My heart hurts so much for you all. So hard. So awful. God will be with you, and you can count on our prayers as well. I’m glad you shared this news, or else i wouldn’t know to offer up special prayers. We love you guys deeply even though it’s been so long since our core team days 🙂

  6. Karen G says:

    I maintained my peace by praying the litany of saints frequently and visiting my friend Fr B in the confessional. I’m coming up on two years now. It doesn’t go away but it gets easier. I guess it becomes my new normal. I went to an MD appoint last week and the MA read that I have a history of cancer. That word history sounded so sweet after 18 months of treatment. God’s peace. Praying.

  7. Tamsin says:

    Hello Bethany, I have quietly followed & enjoyed your blog for many years (since just before ‘Huckleberry’ was born) – and I am so sorry to hear your news. I will be praying for your husband & you all – God bless.

  8. Chloe says:

    I pray God’s peace, protection, and blessings on your beautiful family and marriage, and pray God uphold you and your husband with God’s strong hand.

    Warmly,
    Chloe G.

  9. Clara says:

    I am praying for you all! Thank you for spreading the word about testicular cancer. This is a “young man’s” cancer (18-39 is prime age). My husband had it his senior year of college. He has been cancer free for over 10 years now – Praise be to God!

    I will pray for your husband and your family!!

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