We were in our bedroom when the call came in from the doctor. The tumors in my husband’s liver had grown by about 20% in size. Where there were 8-10 lesions upon original diagnosis of metastatic uveal melanoma on June 15th, there were now 14 on September 7th. His liver enzymes were notably elevated, indicating injury or inflammation. We’d need to see a gastroenterologist to get those liver enzymes under control. And since the tumors had increased in size and quantity, the immunotherapy treatment of Yervoy and Opdivo was deemed to be ineffective. The next best treatment option was a clinical trial in Denver. The gastroenterologist told us it would likely take “a good two months before the liver enzymes [were] stable and [he’d be] off all meds” used to bring enzymes back to normal.
Today marks FOUR months ONE week since my husband’s metastatic uveal melanoma diagnosis. TWO months TWENTY days since he received his last treatment for metastatic uveal melanoma. TWO months EIGHTEEN days since his first ER visit. TWO months SIXTEEN days since his second ER visit and hospital admission. ONE month FIFTEEN days since we found out the tumors were increasing in size and quantity. ONE month EIGHT days since we saw the gastroenterologist and began an intense pharmaceutical regimen to get the enzymes down so my husband’s liver would ready for the next treatment, a clinical trial called imcGP100. ONE week since we found out that the clinical trial will be Portland instead of Denver. ONE week since they sped up steroid tapering to get things moving faster for us. NINE hours since my husband went in for labs to see where things stand today. TWO hours since my husband texted letting me know that his liver enzymes are both finally back within normal limits after being elevated for more than two months.
So much unknown. So much uncertainty. So much waiting.
So much patience, trust and faith to get through these trying times.
Back in mid-July, I knew I was going to need extra layers of support in order to get through this experience. So while we were waiting for one of my husband’s appointments at Seattle Cancer Care Alliance, I stopped by the family and patient resource center and grabbed every handout on caregiver and family support I could. They all led me to Cancer Pathways, a nonprofit dedicated to supporting patients and families dealing with a cancer diagnosis. I submitted an online application indicating interest and providing information about our family’s situation, and soon heard back from Maddie, the person responsible for coordinating services for patients and families. By late July, Maddie and I were playing email and phone tag in an effort to connect and get me “interviewed” so we could find the most fitting caregiver support services.
Phone and email tag wasn’t cutting it. I knew I needed to find at least one extra layer of support and sooner was better than later.
Mid August, I joined a closed Facebook group for spouses of uveal melanoma and metastatic uveal melanoma patients. A couple weeks later, I joined another closed Facebook group for metastatic uveal melanoma patients and spouses of metastatic uveal melanoma patients. Since joining those closed groups, I’ve become Facebook friends with three young wives whose husbands’ had or have a diagnosis of metastatic uveal melanoma; all three of those wives have young children and understand the impact this diagnosis has on the family. First layer of support? CHECK.
In August, we met a couple at our church who have a son our son’s age, and who also happen to be building a house two doors down from us! Early September, I was seriously debating whether I should join a small group to get to know more women in our church, or whether we should join a married couples small group. One week before sign up, I happened to grab an info packet describing each small group. But the week passed and I hadn’t taken one look at it. I was on the verge of giving up on the idea of a small group. Time had run out. But I had that packet and a 10-minute drive to church. So I sat in the back seat and scanned through the group descriptions as quickly as possible. There it was. Staring back at me as if it was meant to be. The couple we’d met a month before, the couple who were going to be moving in just two doors down from us, were hosting a small group and they were open to new members! We signed up for their group and started attending the next day. The group has been a tremendous blessing and thick layer of extra support during this journey.
In August, I also began researching counselors. I wasn’t 100% sold on a counselor for myself, but I’d spoken with someone who lost his brother to cancer and he said he wished he’d begun counseling sooner, so I thought I should at least research. One referral led to another, and I found myself a private Christian counselor 15 minutes from our house. She didn’t accept insurance, but specialized in cancer patients and family members of cancer patients and came well referred, so I knew I’d found my person. She and I agreed to a 1x/month session, which is all I need, can handle, and can afford right now anyway. Our first session was excellent and provided an added layer of education, empathy and practical suggestions I can use during difficult times.
Then things finally came together with that nonprofit, Cancer Pathways, in Seattle. Last month, I joined a support group for families who are facing a cancer diagnosis in the family. I was blessed to find myself in a group of six women, all younger moms whose spouses had or have a cancer diagnosis. Two women in the group recently lost their husbands to cancer. Four of us have husbands with some sort of cancer diagnosis. It was a six-week group and our last session was last week. A new group will resume in January after the holidays. In the meantime, I can tell you this. The layer of support provided by that support group was incredible, deep, rich, a profoundly beautiful gift of connection and authenticity with women who understand what it’s like to live with such uncertainty.
Why share all of this? Why not stop after the medical update? Because one of my greatest hopes for sharing publicly is that MY STORY will inform, influence and inspire YOUR STORY. My ultimate desire is for YOU to see the significance of YOUR story. If we’re going to see our stories as having significance, then it’s crucial that we’re honest about life. Serious life circumstances have serious implications for all parties involved. When serious life circumstances come crashing at your door, the likelihood is that you’re going to need additional layers of support to get you through. In my case, I knew I was going to need more support to get through this. In fact, I told Maddie at Cancer Pathways when I originally contacted her three months ago, that I was just looking for “more layers of support.” What I didn’t know THEN that I know NOW, is that I needed SEVERAL LAYERS of support. I needed two closed Facebook groups, individual contact with moms whose husband’s were or are facing the same diagnosis, a weekly small group through church, monthly individual Christian counseling, and a caregiver support group in order to feel like ALL the bases were truly covered and I was getting ALL the support I needed. It was an incredible realization, actually. To realize you need an extra FIVE layers of support is humbling.
Here’s what you need to hear. You might need MORE support than you realize to get through what you’re going through. Reach out. Talk to a family member, a friend. Gather a group. Send an email, a text. Make a phone call. Connect with a counselor. Connect online. Find a support group. Join a small group. Get help with meals, cleaning, child care. Ask for a break. Breathe. Accept help when you get it, and don’t be afraid to accept help that’s offered repeatedly, from that same person, over and over again. They want to help you. Accept it. Do something different. Step out of your box. If something comes to mind that might be helpful? Try it. You need support. It’s okay to say you need an extra layer of support. It’s okay to say you need extra LAYERS of support to get you through whatever you’re going through. Peace be with you, my friend. Your story is important. Be blanketed in layers of love, care and support.
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