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A new tumor showed up in my husband’s liver at his 8-week scans in May. But the rest of the liver tumors showed a mix of shrinkage, growth, and stabilization, so we signed a form stating we were choosing to continue the clinical trial despite disease progression, and proceeded to receive 8 more infusions of the drug.

At his 8-week scans in July, the new tumor grew, and a couple other concerning ones grew a tad, too. But just like last time, the rest of the tumors showed a mix of shrinkage, growth and stabilization, so we did a risk analysis with the doctor and decided it made most sense to stay on study for another 8 weeks.

After those scans, I shared a medical update with friends and family. One response caught my attention more than any other and has stuck with me since.

“I can’t imagine living 8 weeks at a time.”

Reality is, we started living scan to scan 4 1/2 years ago when my husband was first diagnosed with choroidal melanoma (eye cancer), but living scan to scan took on a whole new meaning eight months ago when we started a clinical trial for liver metastasis. Instead of scans every 9 months, 6 months, 4 months or 3 months as we’d done in the past, this trial required scans every 8 weeks. So when I saw that “I can’t imagine living 8 weeks at a time” comment pop up, it resonated deep within me. Living in 8-week intervals is a challenge. It changes the way you live.

We’ve been living 8 weeks at a time for more than 8 months now. But this current 8-week period felt different. Both my husband and I had prepared ourselves that there might have been enough tumor growth for us to be kicked out of the trial back in July. So when they told us we could stay on for another 8 weeks, it felt like a GIFT, a gift of more time.

My husband was glad he had another 8 weeks to stay on a treatment that’s become predictable as far as regimen and side effects. This is a crazy busy time for him at work. He had three big business trips over the course of this 8-week period, for a total of 11 full days of out-of-state travel. During these 8 weeks, he also took on more responsibility at work. And then there’s the 4-day Boundary Waters trip he’s had planned with buddies, also during this 8-week period. He decided he wanted to put more priority on local friendships, so he shared his intentions of getting a guys night out scheduled sooner rather than later. And he thinks we should be doing a better job of inviting more people over for dinner, so we agreed on a family we wanted to invite over for dinner. The only problem is we haven’t gotten around to inviting them yet. They’re the ones texting us, asking if we have room for freezer meals.

Living life 8 weeks at a time has taught us that despite our challenges, despite our most difficult hardships, life goes on. There’s work to be done, schedules to keep, priorities to consider, and plans to be made. So we flow, we live and we move through life. We keep things as normal as possible for normal is predictable, normal is comforting, normal is known.

The day we received scan results in July, I knew this 8-week period was a gift and I have treated it as such. Some might say I’ve gone overboard. Maybe so. But right now, I care little for what people think unless they’ve walked in my shoes. I’ve done what I needed to do. So in July, I decided that from here on out, I will do everything I can to keep myself healthy. I committed to working out three times a week, went to the dentist, to the OBGYN for a pap smear, had my annual mammogram, an intake appointment with a grief counselor, an intake appointment with a nutritionist, and met with a primary care physician. Have we covered all the bases? I believe so. In this 8-week period, I created an aggressive agenda and took a whole 5-day work week, 9 am to 4 pm, while my girls were at cancer camp to analyze my work life and seriously consider my call to pursue writing and photography in light of current circumstances. I pressed hard on household tasks, ensuring two furnace parts were replaced under warranty, ensuring a claim is still in process for replacing our washing machine also under warranty, beginning a discussion about cutting the cable cord, and keeping up on laundry, cleaning and finances so things were ready in the event of sudden change. And yes, I did all of that with the overarching goal of being a good wife to a husband balancing work and stage IV cancer, a good mom to three kids home for summer, and the best friend possible to local women who have been absolutely FABULOUS in every way possible. My anxiety has increased, and I’ve hit a few walls of fatigue and stress. But I’ve also felt strong and empowered and I will somehow make it through this.

Living life 8 weeks at a time has taught us that keeping ourselves healthy isn’t optional, it’s necessary. Taking responsibility for stuff that needs to get done isn’t optional, it’s necessary. Sometimes it takes hardships to push us to do the things we’ve been debating, doubting and putting off for far too long. Yes, there’s no better time than NOW to do pretty much everything.

And then there are the kids. I brought the girls back-to-school shopping and our son by himself. Managed to get all three out for school supply shopping, our annual pizza at the park outing, and an afternoon at a trampoline park. During this 8-week period, one of our son’s best friends moved to California. I prayed that God would surround our son with new friends and that existing friendships would be strengthened, and that prayer has definitely been answered. As evidenced by empty energy drink cans, McDonald’s bags on the kitchen island and lots of voices coming from the game room, this has been an incredibly busy social summer for our son. Our oldest daughter has also been socializing like a mad woman. And then there’s cheer. She had to raise $650 through fundraising in addition to the $550 we already paid for basic fees and $675 for the uniform package. So in this 8-week period, she learned what it’s like to go door-to-door trying to raise $650 by selling $9 car wash tickets. Real life at its finest. The youngest has been obsessed with playing. Any kind of playing. Indoor. Outdoor. Slip and slide. Playground. Movies. Playdates. Lemonade Stands. Tractor rides through elk fields. Whatever. It’s all fair game. I can still carry her if she jumps into my arms, which reminds me she’s still so little. And I see my big kids ready to head off to a beautiful new high school in a couple weeks, and time is literally slipping away before my eyes. I want to stop time for them. Stop time for me. Stop time for all of us as a family because this couldn’t be going any faster, and I don’t want to get through this medical crisis and realize they’re grown, they’re gone. What happened? Oh my.

Living life 8 weeks at a time has taught us that there is a season for everything. Seasons come and seasons go. Seasons don’t stop when you’re stressed or distressed. Seasons won’t stop so you can enjoy them a little longer. Savor those seasons while you can. Because once they’re gone, they’re gone. Love whatever season you find yourself in. Because before you know it, it’ll have turned.

And I was holding up oh so (sort of) well for 4 weeks and 6 days of this 8-week period until our 14-year old daughter jumped out of the car and sprinted into the house to change out of her cheer uniform before I could even process what was going on. She was leaving with her friend and needed to pack quickly. I didn’t even get to say good bye. Realizing what was happening, I looked out the side window of our car and started to cry. “Why are you crying?” my husband asked. “You should have told us your plans.” “I didn’t plan this,” I responded. “I didn’t plan any of this.” All I’d planned, all I’d hoped for was ONE meal out as a family that weekend. One meal. But five became four when our 16-year old said he had to work all day. And four became three when our daughter rushed off to a last-minute outing with a friend. And suddenly, our family time was gone and it was just the three of us with 45 minutes until I needed to leave for a photo shoot. Not enough time for a nice meal out. Arby’s was where it was at. I felt like Steve Martin in “Father of the Bride” when the whirlwind wedding left him trapped in a crowd, unable to see his daughter for even a passing moment before she whisked away with her new husband. What happened to my daughter? What happened to my family time? What happened to my life?

Yes, that’s what finally broke me. That’s what made me cry. That’s what living 8 weeks at a time has taught me. Live diligently. Live awake. Life is a fleeting mist and we’d better get at it NOW.

I gathered myself. I ate my turkey club at Arby’s. I was back in time for the photo shoot and it was awesome.

But the truth is, it had been a difficult week. My husband woke with pain on Tuesday that seemed to distress him and he’s not a distressed kind of guy. The pain lasted all day, made him uncomfortable, worried and more fatigued than normal. The pain got better by day two, three, four and five, but he could still feel something different in there, and there was still an area that was sensitive to touch. I sent an email to the head nurse and they told us they wanted us to come early for scans. We didn’t even get 8 weeks this time. We got 5 instead. Just as I’d thought. This 8-week period was a gift. Every week. Every day. Every minute and second. A gift.

While this week’s scans didn’t show any NEW tumors and technically he’s “stable” according to study parameters (less than 20% growth since the last scans 5 weeks ago), the doctor said he’s “on the plus side of stable.” There’s also a key lab that’s been on the rise for seven weeks, which more often than not indicates that the melanoma is getting ready to grow. So the doctor recommended we begin taking a serious look at what our next treatment options will be. Sometime in the next 2-3 weeks, we’ll be meeting with an interventional radiologist to determine what type of liver-directed treatment will be best, and after that treatment is done, we’ll need a new systemic treatment, which will likely be another clinical trial.

So for now, we will live NOT EIGHT WEEKS at a time, but ONE DAY at a time. That’s the best choice any of us can make anyway.

“Therefore do not worry about tomorrow, for tomorrow will worry about itself.” Matthew 6:34

 

  1. Keith Robinson says:

    Thank you so very much Amy for your trust and openness to share your journey. I sit here weeping and praying for you & your family. Bless you sister; 8 weeks at a time. You are all missed here in Minnesnwota!

  2. Joyce Jacobson says:

    My, my, every day is precious isn’t it? You are in my thoughts daily. I send you strength for each day. Love to all of you.

  3. Ginny Revak says:

    Amy, your words are inspiring. Reading of your struggles and challenges makes me realize that we should all keep our  “house” in order; schedule the doctor appointments we’ve put off, visit loved ones we’ve missed, pray more and thank God for each day we’re given. Your family is in my heart and prayers. ????????❤????????

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