This week marks one year since my husband’s diagnosis of Stage IV Metastatic Uveal Melanoma, an incredibly rare form of melanoma that affects 6 in 1 million people. What started in January 2015 as one single tumor in his eye metastasized to 8-10 tumors in his liver in June of 2018 and is now 16 tumors in June of 2019. We started treatment at Mayo Clinic in Minnesota, moved to Seattle Cancer Care Alliance in Washington, and are currently receiving treatment at Providence in Oregon. The first-line of treatment, an immunotherapy combo of Yervoy/Opdivo was deemed to be ineffective after three infusions. After a four-month break from treatment due to a whole-body rash, an incredibly rare case of Drug-Induced Lupus, and elevated liver enzymes that needed to be managed with steroids, we began a new treatment, this time a phase II clinical trial called IMCgp100. Infusions have been weekly for more than six months now. Most recent scans showed the presence of a new tumor in the liver, so we may be moving towards another new treatment this summer or fall.
I watch a piece of cotton drift through the air. Another piece lands on my forearm. Birds take flight overhead. The dogwood we planted in memory of my husband’s grandmother is slowly losing its creamy white blooms, and the slip and slide is drip drying on a wicker chair. Tiny voices giggle and squeal on the other side of the fence. Our kids have their last full day of school today, then after a few hours tomorrow, they’ll be home for summer. Life goes on. Life is normal. And not so normal at all.
And I think of that special someone, that someone who rang the doorbell of our Seattle suburb home less than a month after my husband’s mets diagnosis last summer. She showed up with a feast of Stan’s Bar-B-Q, chocolate cupcakes, and a bouquet of flowers purchased by our friends from Minnesota and and hand-delivered at their request. I’ll forever be in awe over that grand gesture of kindness and creativity from those Minnesota friends.
The grand gestures of kindness and creativity didn’t stop there. That special someone didn’t have ANY connection to us beyond our one mutual friend in Minnesota, but she kept showing up, NO longer at the direction of our friend back in Minnesota, but out of her own goodwill.
She delivered pizza, Jersey Mike’s subs, and Thai twice. She had Mexican ready for pick up, showed up with numerous bags of groceries for a Thanksgiving feast with my in-laws, and delivered an IHOP breakfast early one Sunday before we left for scans. She stopped by with surprises for our kids – tennis shoes for our son and an outfit for each of our daughters, hand-picked and specially chosen. I found out she was the one who left me an extravagant gift at the door. And I’ve certainly missed something considering all her crazy acts of selfless generosity this year.
But then there was this LAST delivery, our FIRST meal delivery after scans showed a new tumor, the 16th tumor. The doorbell rang and there she was with a big bag of Chick-Fil-A.
“Oh my goodness. Thank you. This is going to be AMAZING,” I said. “How are you doing?” she asked. I went on to explain that scans showed a new tumor. She already knew from the post I’d shared on Facebook that morning. “Do you need to talk?” she inquired. “Yeah, actually.”
In she came with her big white bag full of chicken sandwiches, fruit, salad and waffle fries. She sat on the loveseat. I sat on the long couch on the opposite side of the room.
There we sat.
Facing each other.
We’d just arrived home from treatment and a three-hour drive, my husband was still out in the car on a conference call for work, and our kids were all gone, so I had a little time.
Time. That’s all any of us need…just a little time.
Conversation began. I went straight at it. She’d asked me directly if I needed to talk and I said yes. So in I went, right in once we sat on those couches. No use beating around the bush. I told her where things stood. I looked straight at her and expressed my concerns. I told her what I was needing right now.
Then after I expressed what I needed to express, she responded in an ever-so loving and understanding way, saying the thing I needed to hear for one whole year.
“This is not normal. This is not normal at all.”
“No it’s not,” I replied. Silence fell a bit before conversation moved on.
Can anybody give me an amen? This is NOT normal. This life we’ve led for the past year is NOT normal. If you’d like to debate the definition of “normal” for me, go for it. If you’d like to argue that “normal” is relative and nobody is normal, that’s fine. Go at it. But there IS some semblance of normal, some top-of-the-bell-curve range of normal life and we have NOT been living that life this past year.
A 6 in 1 million diagnosis is NOT normal. Moving into a new home on June 11th, driving away from that new home and flying 1,700 miles away on June 13th, and leaving your kids with your with your in-laws for 11 days while you go get a serious diagnosis is NOT normal. Having to sit on the phone for hours and fight with insurance companies over coverage (or lack of coverage) of MRIs and PET scans when you are dealing with your husband’s pending diagnosis is NOT normal. Having to stay in hotels, guest houses and other peoples’ houses while you’re getting scans and treatments is NOT normal. Calling your braless friend to come over when it’s still dark and drive your kid to the bus stop in her pajamas because you have to get your spouse to the ER as soon as possible and he shouldn’t be left alone for even a few minutes is NOT normal. Having a rash show up ALL over your entire body is NOT normal. Having your skin turn from normal to vitiligo ALL over is not normal. Having your beard turn 100% gray when you’re 45 years old is NOT normal. Having to travel three hours one way every Sunday night to get to a clinical trial, get an infusion and drive back three hours every Monday for months upon months is NOT normal. Having people watch your seven year old and fourteen year old every single Sunday and Monday is NOT normal. Having to leave your sixteen year old to fend for himself every Sunday and Monday is NOT normal. Having your seven year old cry for two months on Sundays because having her mom and dad leave every Sunday is getting really old and she’s had enough of it is NOT normal. Having scans every eight weeks is NOT normal. Going to get your blood tested every week is NOT normal. Worrying whether a teeny tiny box titled “joint ownership with survivorship” is checked on the title on all of your vehicles is NOT normal. Being told your spouse has another tumor, waiting too long for a response from the head doctor, and being told it is highly advised to wait another 5 weeks until the next set of scans to see how the melanoma is growing, and that he might need another biopsy or he might need a PET scan and that there might be six or more next treatment options is NOT normal. Finishing a workout and having to lean over a garbage can as you walk into the locker room because a wave of grief washed over you as you took a sip of water and you know that if you can’t keep that grief contained you just might spit it all out into that garbage can. Yeah. Not normal.
This is NOT normal.
Thank you, special someone who has diligently served us with meals and unexpected gifts this year, for straight up acknowledging the ONE simple thing I needed to hear.
This is NOT normal.
This is not normal at all.
I’ve tried. I’ve REALLY tried to live a normal life. Although metastatic uveal melanoma rarely strays from my mind, I’ve worked hard for 12 long months to keep my thought life tamed and at bay. I have worked hard to live a normal life for myself, my husband and our three children. I have worked hard to be as positive as I can, to enjoy every moment and not worry about this, that and everything under the sun.
I’ve seen my husband looking normal, acting normal and working hard just like everything is normal. I’ve watched him put in long hours at work and go on business trips. During this past year, he made an appearance on the red carpet of the Billboard Music Awards and someone commented so poignantly “This is your best work life ever.” Yes. True. These past several months HAVE been his best work life ever. I want a good work life for my husband. I want an awesome work life for him. I honor and respect the supernatural power of positivity he has had in response to his diagnosis. I want a joyful and normal life for our entire family. But I also need to acknowledge that this is NOT normal.
So thank you, special someone. Thank you for saying it straight up.
This is NOT normal.
I just needed someone to say that.
I just needed someone to see that.
I just needed to know I wasn’t alone in thinking this is NOT normal.
When you sit with someone’s story and acknowledge that this is NOT normal, you validate their pain, you validate their life.
And here’s what you really need to know. Yes, this is a secret I believe everyone does NOT understand intuitively. When you listen to someone, when you really SIT and listen to their story and acknowledge that this is NOT normal, you FREE them to truly live.
So yes. Thank you, special someone. Thank you for listening and acknowledging. Thank you for saying “This is not normal. This is not normal at all.” Thank you for sitting in that loveseat, looking at me, and saying it like you meant it.
Your words validated me. Your words reminded me that I’m not alone, that I’m not going mad. Your words reminded me that there are people who understand and are willing to sit with me and the questions. Best yet, your words were empowering. Your words allowed me to embrace my gut feeling that this is indeed NOT normal. Your words empowered me to move on, to soak in the sun, the clouds, the rain and the gentle breeze. Your words freed me to live, knowing it’s okay to fully acknowledge pain and fully acknowledge life in its bountiful abundance. Your words freed me to leave my seven year old with my fourteen and sixteen year old last night so I could go to Bible Study and discuss how we can best be light in the darkness. Your words freed me to be vulnerable with the group, to share prayer requests for myself and for our family. Your words freed me to make a quick stop at home and grab the car keys trusting that these kids are going to be okay, because light will always overcome darkness. Your words – THIS IS NOT NORMAL – freed me to put those keys in the ignition and drive to my monthly girls night where I was greeted with a hug, six welcoming smiles and genuine conversation with the most amazing ladies yet. Your words – THIS IS NOT NORMAL – freed me to breathe easy while I sipped a glass of wine, ate Ghiradelli chocolates, talked about motherhood, work life and lots of 40-something normal things for two hours. Your words – THIS IS NOT NORMAL – allow me to see once again that life is full of incredible pain and incredible beauty. And as daylight turned to darkness, she turned on the lights and our normal, ordinary, everyday conversation lit up the darkness.