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We were eager to get home after a day of doctor appointments, but when I’d last changed our bedsheets, my husband’s pillow protector disappeared. Thanks to heavy night sweats caused by metastatic uveal melanoma, a nasty virus and a bunch of meds, and a pillow case not staying on the way it was supposed to, we were in desperate need of a pillow protector. “We’re stopping at Bed, Bath & Beyond. You can stay in the car. I’ll run in. I’m getting you a pillow protector.”

My goal was to race in and out, grab that pillow protector and move along. But there, right in the entry of Bed, Bath & Beyond, was a hard-to-miss Christmas display. I have to admit. It was early, perhaps not that long after Halloween. But I’d been thinking of Christmas. In the midst of all the significant medical stuff, I was ready to embrace every good thing that comes with Christmas, even IF it was a little early. I stopped, touched some poinsettia placemats, picked up a snow globe and wondered if a sparkly gold candle would work in the farmhouse hurricanes on our dining room table. Wandering the aisles, I took a moment to soak in some Christmas peace before I grabbed a two-pack of pillow protectors and got in line.

“Ridiculous all this Christmas stuff out so early” grumbled the guy behind me. He was clearly NOT happy with Christmas before Thanksgiving. “Yeah, it’s a little crazy,” I said out of obligation, trying to be as benign and agreeable as possible. But the second I said it, I knew it was oh so wrong. I knew I needed ALL the Christmas stuff this season. I could have made him aware. I could have been that quiet voice nudging him to ease up on the Grinch tendencies. You see, I needed a bit of Christmas hope that day. Even if it was before Thanksgiving. Even if it was a little early.

I walked straight to the back of the drug store, straight to the pharmacy, then got in line to pick up two prescription refills for my husband. The guy in front of me was complaining to the pharmacy technician. Well, let’s just say they were complaining to each other. Grumbling loudly, without reserve. “I don’t trust these people who have all their gifts bought and wrapped already. That’s ridiculous. What’s up with you that you have all that time to be thinking about Christmas right now? Perhaps you’d better use your energy on something else.” On and on they went. Grumble grumble. Whine whine. I listened, but stayed out of it completely. The tone was judgmental, narrow minded. I just couldn’t play their game given the serious nature of my husband’s medical situation. Whether someone wants to celebrate Christmas early OR late, or early AND late is none of anyone’s business.

Fast forward to November 12th, a solid 10 days before Thanksgiving, and we’re driving three hours to Portland for an intake visit with the lead doctor of a clinical trial my husband will soon be starting for metastatic uveal melanoma. Pretty early on in the drive, he decided to recline in the passenger seat. He rested his eyes and I found some smooth jazz. “This reminds me of music they’d play in the MRI room, doesn’t it?” I joked. My husband agreed, chuckling a bit. “This is good,” he said. So we listened to the smooth jazz. Light. Easy. Unremarkable. Non-threatening. When he fell asleep, I scanned the channels and found an all-Christmas station out of Portland. Feliz Navidad, Holly Jolly Christmas, and Have Yourself a Merry Little Christmas played as I drove my sleeping hubby to his appointment.

Before long, we arrived. I took a few pictures to mark the occasion, our THIRD medical facility for treating my husband’s incredibly rare form of cancer called metastatic uveal melanoma. First Mayo Clinic in Rochester, MN. Then Seattle Cancer Care Alliance in Seattle, WA. Now Providence Cancer Center in Portland, OR. Been there, done that. Only this time, the treatment is investigational. Various studies across the country have been using this drug in trials for 2 1/2 years, and they’re hoping to have FDA approval in approximately one year. Yes, this time treatment means we’re in a research study, utilizing a treatment that’s not FDA-approved. Yet it’s an honor to help advance cutting-edge treatment options.

We got in very quickly. The nurse who entered the data and completed the vitals was lovely. The doctor in charge of the research project was ridiculously quirky and brilliant. The more he talked, the more I loved him. I wouldn’t want my husband and the father of my children in ANYONE ELSE’S hands, and that’s a LOT coming from me. I’m a picky one when it comes to doctors. I have high standards, I tell you. And this doctor was superb, the best of the best. He knew his stuff and he was geeky, quirky about it and I LOVED it. Then we were introduced to Chris, the nurse in charge of the research study. We were told he’d be our point person. He was gentle and smooth, kind and caring, knowledgable and practical, JUST the kind of point person you need when your single eye tumor metastasized into 15 liver tumors, and the first treatment option didn’t work. Lovely. Brilliant. Geeky. Quirky. Gentle. Smooth. Kind. Caring. Knowledgeable. Practical. Plus there was a cross by the Providence sign everywhere we went. Everything we needed. I knew this was where we were supposed to be at this point on our journey. As odd as it sounds, it made me happy, content, feeling full that although this wasn’t where we wanted to be, this was exactly where we needed to be.

We’re talking science here, folks. We can’t be ALL sappy and smooth sailing. So believe it or not, there was a ridiculous amount of information disseminated during our intake appointment at Providence.

The clinical trial is called IMCgp100, a Y-shaped antibody engineered with a custom function. One part of the Y sticks to the melanoma cell. The other part of the Y sticks to the T cells. It triggers the cell to activate and kill what it’s attached to. If you’re lucky enough to be among the 50% of people whose blood tests positive for HLA2, you qualify for this trial. Fortunately, two independent lab tests confirmed my hubby is indeed HLA2 positive. We are grateful because the doctor said this is currently “one of the most exciting options they have for metastatic uveal melanoma.” 40% of patients get a benefit, which is defined as some sort of tumor shrinkage. An additional 10-15% of patients see stabilization of the tumors. No patients have seen the tumors completely disappear. Once treatment starts, he will have scans every two months. As long as there is “clinical benefit” (defined as stable or shrinking) he can stay on the treatment. Treatment is WEEKLY. The first three infusions require an inpatient hospitalization. The fourth treatment may require a hospitalization as well. Treatment continues UNTIL: 1) the patient experiences “unacceptable side effects,” 2) the “cancer grows or spreads,” or 3) the “study doctor decides that it is no longer beneficial for you to continue receiving the study drug.”

Action steps included a 10-day Prednisone taper from 10 to 5 to 2.5 to zero, then holding at zero for an additional 14 days before treatment can begin. A dermatology appointment, biopsy and possible treatment of the bumps on his hands and rash on his back, chest and arms. And a two-day screening process at Portland Providence. Phew. Breathe deep, Amy. Given the requirements and minimum timelines, the week of December 10th is the earliest treatment could begin. By then, it will have been four plus months without treatment. But we are on our way. We are doing our best. Treatment will begin again.

I felt a strange sense of peace as we exited the examination room and made our way to the parking ramp. My husband didn’t seem nearly as thrilled. Perhaps it was the news that it would be another month before the new treatment could begin. Perhaps it was the reality that this is one of the most exciting new treatments available for patients with metastatic uveal melanoma, but there’s only a 50-55% chance that the tumors will shrink or stabilize. Perhaps my husband was just tired and worn.

He reclined and slept much of the way home. I turned on Spotify and enjoyed classic and acoustic Christmas tunes as I drove my sleepy hubby home to Seattle.

“Christmas songs, huh?” he said when he woke. “It doesn’t feel like Christmas at all.”

“Oh it totally does to me,” I said and kept on driving all the way to Hobby Lobby where we bought sparkly-tan poinsettias and creamy-gold berries for the Christmas tree before heading home.

Pumpkins are still out on the steps. The Give Thanks plate my mom sent is prominently displayed on the corner of our kitchen island, and the cute felt turkey is resting peacefully on our end table. Tomorrow we’ll enjoy Thanksgiving dinner with my husband’s parents who flew in for a 10-day visit. Neighbors are coming over for pie and conversation. We’ll enjoy turkey, gravy and a ridiculous abundance of food a friend of a friend dropped off for us. We’ll give thanks. We’ll express our gratitude for today, for these precious moments in time. We’ll enjoy Thanksgiving. Then come Friday, the pumpkins and turkeys are going away and we’re celebrating Christmas. We’ll celebrate Christmas EVERY day we can. We’ll celebrate when it’s far too early, before it’s time, when it’s time, and YES, even AFTER the hoopla’s put away. We give thanks AND we put our trust in the hope of Christmas. Jesus. Came as a baby. For us. Pure joy. Death is defeated. Glory be to God.

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A six-hour ER visit, nausea, fatigue, dizziness, drowsiness, lightheadedness, sweating, gastrointestinal issues, abnormally high heart rate, unusual bumps on his hands, red spots scattering his back, a light rash emerging on his abdomen and sides, a knot in his stomach, heartburn and pressure in his chest, feelings of fullness and air in the abdomen, feeling unusually and painfully full when ingesting small amounts of food, ear pain, sore throat, mild cough, and two days with oxygen saturation rates as low as 91 and 92.

These are the countless number of symptoms my husband has experienced the past eight days. His diagnosis? Metastatic uveal melanoma, an incredibly rare form of eye cancer that metastasized to his liver four and a half months ago.

Cancer is consuming, but we are pressing on.

He stayed home from work one day. Went in for two hours the next day, three hours the day after that. Managed a half day the following work day. Worked from home yesterday. Trying to work today. Work goes on. Life goes on.

Cancer is consuming, but we are pressing on.

They spent two months tapering from 100 to 7.5 mg Prednisone, brought it back to 15 for two days to combat the host of symptoms, then dropped it to 7.5 again. Tomorrow, he’ll be back on 15 for two days, then they’ll taper and hold at 10. That’ll get us through the next six days, then we’ll meet with a new doctor who’ll have his own set of requirements for the clinical trial we’ll be trying.

Cancer is consuming, but we are pressing on.

Two days ago, we went in for a CT scan and MRI of the abdomen. Yesterday, we went in for a MRI of the brain. Today, we went in to meet with the doctor.

Hallelujah, the brain, lungs and other organs are still clear and cancer free. But all the liver tumors have grown. Whereas there were 14 tumors in the liver at the last MRI on September 7, 2018, there are now 15 liver tumors. Whereas the largest tumor (aka “Segment 6”) was 3.5 x 3.1 cm on September 7th, it’s now 4.1 x 3.2 cm on November 5th. Whereas the second-largest tumor (aka “Segment 7”) was 1.8 x 1.9 cm on September 7th, it’s now 2.8 x 2.4 cm on November 5th. The rest are the size of grapes or cherry tomatoes. Mayo Clinic’s website tells me that a 3 cm tumor is the size of a strawberry and a 5 cm tumor is the size of a lime. So the biggest lesion is somewhere between a strawberry and a lime. Seems trite to compare a strawberry, lime or cherry tomato to a tumor, but for some reason, that helps us comprehend.

Cancer is consuming, but we are pressing on. 

My husband’s first treatment, immunotherapy, was deemed ineffective, as the tumors increased in size and quantity during the time he was receiving those infusions. He had a severe reaction after the third infusion, which caused his liver enzymes to soar out of control. Unusually high liver enzymes were combatted with high doses of Prednisone, which was followed by a slow Prednisone taper. Three months later, we finally have normal liver enzymes again and low enough Prednisone dosing to move on with the next-best treatment option, a clinical trial. In six days, we will drive to Portland where we’re scheduled for an intake appointment with Dr. Curti who is in charge of the clinical trial, imcGP100. We don’t have a start date for treatment. We don’t know a lot of details about the trial, in fact. But in six days, we have the intake and will hopefully know more.

Cancer is consuming, but we are pressing on. 

Every day, for the past eight days, it has been difficult to predict what the day will bring. Will my husband feel well? Will he be dizzy, lightheaded? Will he be able to work in the office, at home, at all? Will he be sleepy and ill in the morning, afternoon, evening or all three? Will I find him reclining on the comfy chair in our bedroom, taking a break from getting dressed in the morning? Will he be in bed with the door closed, or on the couch with the TV on? It’s hard to say what ANY day will bring, let alone any hour. We don’t know. We are hoping for improvement. We are hoping for stability. We are hoping for some answers. They’re telling us it could be a virus that came on at the same time as he was tapering low on the Prednisone, that his adrenal glands have taken a hit with all the Prednisone and can’t keep up with production. Oh, and did I mention, we are getting a referral to the dermatologist for those unusual assortment of bumps on his hands and red spots on his back? The doctor took pictures. He hasn’t seen anything like it. Maybe the dermatologist will know from just looking at the pictures, but she’ll probably want to see them for herself. He’s going to email the dermatologist the photos and try to get us scheduled sooner rather than later. Does anyone know what’s going on?

Cancer is consuming, but we are pressing on.

Our former neighbor texted, asking for our address so she could send something. “I’m so sorry from the bottom of my heart that I haven’t gotten something out to you yet – there are really no excuses and all I can say is we were so busy…” She then went on to describe everything that’s been happening in their family the past five months. The craziness, the chaos, the unpredictability, the projects, the trying to get everything organized again.

I stared at her text, wondering if she felt guilty for living her life and not tending to us sooner. I could write a whole post begging you to live your normal, regular, boring, everyday life, but the truth is…

LIFE is consuming for ALL of us. We are ALL pressing on.

She went on to say she thinks of us “literally every day,” that they “are praying for all of [us]…and sending [their] love.” I responded intentionally with “thank you so much.” That’s all that needed to be said. Thank you so much for thinking of us. Thank you so much for your prayers, your love, your kindness in reaching out during our time of need.

LIFE is consuming, but we press on hour by hour, day by day, week by week, month by month, year by year.

None of us know where each hour, each day, each week, each month will bring us. None of us can predict where we’ll be a year from now.

So live, press on your path courageously. Recognize the good AND the bad, the ying AND the yang, the excitement AND the discouragement, the projects AND the piles left undone, the ups AND the downs, the joy AND the sadness, the health AND the sickness. For we WILL have trouble, but take heart, dear one. There is a God, and He has overcome.

So wherever you are, be there. Press on. Live hard. Take your vacation. Work that job. Hug your kid. Go on an adventure. Lie in bed and feel like crap. Pray to God He’ll restore your son’s health. Cry to the song you played on repeat when you were at your lowest. Live the best life you can. Every day. For today. Good or bad. Good AND bad. No matter what. Whatever life looks like. Believe it’s okay.

 

  1. Betty hjelmhaug says:

    Amy Seth and family my prayers go out to you daily god is by your side 

  2. Erika Novak says:

    You two are amazing!  Praying for miraculous healing and strength!  God Bless you both and He is with you each moment.  Love you and miss you!

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