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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.

Today’s story is written by my younger sister, Tiffany, who has a diagnosis of schizoaffective disorder, bipolar type. Tiffany has shared regular stories on my site since February 2015. The purpose of her writing is to raise awareness of what it’s like to live with mental illness, and serves as a gentle reminder for all of us to continually press forward towards mental health and wholeness. If you’d like to read the stories I’ve written about Tiffany’s journey and all the stories she’s shared on this site, check out Tiffany’s Story. Without further ado, here’s Tiffany.

I’ve heard that sometimes a person needs to change their environment in order to grow. For me, that was my trip out to Washington to visit my sister and her family. When I returned, a few people told me how much I had changed. I was much more aware of what I wanted from life. I was no longer searching for the missing pieces of me, wondering if my life was complete. I realized that I was in the environment I needed and wanted to be in, here in Minnesota.

My sister moved to Seattle around Christmas. Her husband got a job there. I dealt with some severe emotions when I found out she was moving. When she finally moved, I dealt with slight sadness.

We booked our plane tickets to visit my sister and her family a few months before we actually went there on July 4th. I paid for our three tickets with money I got back from rent rebate. My mom was also with us on our awesome vacation. She had Delta Airlines gift cards from her surprise gift opening last Christmas. My mom and I also had a garage sale to get spending money for our Seattle trip. I was SO excited for my kids to go on this trip with me, especially the plane! The kids were asked if they wanted to go in the cockpit of the plane. What an awesome experience for first-time flyers! My sister and her son, Cooper, were at the airport to pick us up. We were all so happy.

We arrived in Seattle close to fireworks time. I was tired and wanted to stay at my sister’s house. My sister’s husband, Seth, and their son, Cooper, stayed at the house with me. My sister, mom and the rest of the kids went to a 4th of July celebration. Seth, Cooper and I did fireworks outside. Seth and Cooper got some pretty cool ones! We laughed and had an awesome time. The rest of the kids came back with pure excitement, showing us their glow sticks and telling us stories.

My sister had her shoes on and was ready to show us an adventure every day. My sister and I have a relationship that can’t be broken. She tells me how she feels when needed. I use her words as a way to grow! I feel that my sister is a very strong person! She knows just what to do, in my eyes. We went to a beautiful beach with the kids one day. I really noticed my panic attacks when my kids were near water. I was screaming for them to stay near the shore. I would have bought life jackets for the kids if I would have known how my panic attacks would affect me. One of my fears is screaming and having nobody hear me. That day at the beach, I was screaming most of the day. My sister sat with my mom and they tried to calm me down. “But my kids are out there in the water!” “Everything is fine, Tiff. Calm down,” my sister said to me. She was right, nothing happened. I always try to be safe, but maybe too safe?

I was very thankful that my mom came with us on our trip to Seattle! She helped us on the way there and back by helping watch the kids and getting us on the right planes. Large crowds and too much stimulus affect my family. My mom helped take away that stress by staying calm and leading us in the right direction. My mom and I tend to argue at times, but we got along great the entire vacation! My mom rationed the money I had along. She also made some very delicious meals for us to eat while we were there. During our adventures in Seattle, she helped make sure the kids were always near us. She also proved that anything can be accomplished, no matter what age you are. She hiked and was willing to experience any adventure my sister had planned. I love my mom so much, and I’m happy she was our travel buddy!

My brother-in-law, Seth, works for T-Mobile. I feel so awesome hanging out with him because he is so cool! He is battling cancer right now. We had an awesome couple weeks together, and we really did not think of the cancer at all. Seth was working a lot while we were there, but we did see him on a couple weekend days. My sister and Seth love to landscape. They took some time to pick out what they needed and had the best time planting and replanting together. They were so ZEN and so loving the moments together. We chilled outside while they worked on the yard work. A memory and time I will cherish forever!

My son, Xander, watched my nephew, Cooper, play basketball a lot when we were in Seattle. Xander finally mastered dribbling a basketball. Cooper took Xander to the park a few times to practice. Xander looks up to Cooper so much and talks about him often. Cooper has a mini fridge in his room, filled with drinks, including numerous flavors of Mountain Dew. I asked him if I could have one. Occasional Mountain Dews make me very happy. I did not drink all of them, but I had a couple more during our vacation. One night I couldn’t sleep and noticed that Cooper was awake. I told him I was worried about his dad. Cooper gave me some sleeping tips and they worked. It’s the little things that we’ll always remember!

My niece, Elsa, and I have become very close over the years. Elsa came into my life at a bad time. I was in my horrible days of drugs, alcohol and mental health issues Elsa’s first five years of life. I always wonder why I don’t recall the younger days of Elsa growing up. I was stuck in addiction and mental health issues. I was a mess! Yet, I still kinda am a bit! LOL! I love hanging out with Elsa, talking, shopping and exploring. One of my goals for the trip was to spend plenty of quality time with Elsa. We walked downtown where my sister lives and it is surrounded by mountains. I really liked it! Elsa and I went shopping a bit and sat at the coffee shop drinking coffee. Elsa’s drink tasted a bit too much like coffee, so she gave it to me. We also explored the stores, and she had someone tell her about tarot cards. There was also a shop that had a meditation class I wanted to go to, but I came at the wrong time. When we went out downtown, a few people knew Elsa and said hi. She is just a sassy, lovable soul. She is nice to almost everyone and doesn’t judge others. She has this sense of understanding that is beyond her years! My time with Elsa during the trip was amazing.

My family means the world to me. Every single one of them! My niece, Maisie, is in first grade now. Before she moved to Seattle, I always felt she was skeptical or scared of me. I had not seen her for more than six months. The way she looked at me during the trip was full of confidence and love. Maisie’s elementary school is pretty close to their house, so we went and played there a few times. The girls are awesome on the monkey bars! Mountains surrounding us! Looking at pretty flowers all the way there and back. So beautiful! Maisie adores my daughter, Raegan. Those two had a blast during the entire trip!

I’ve always enjoyed my time alone, and I’ve always enjoyed walking around downtown. My sister’s family lives in a town I wanted to explore, so I went downtown a few times. One time, I went to the local bar and hung out with the locals. I was not drinking alcoholic drinks. I even had one guy and girl ask me to work as a bartender for them. Made me feel pretty good! After I finished exploring, I called my sister and her husband to pick me up. I told my sister that there was a cute guy in the bar that I wanted to observe. Seth said, “You should’ve stayed.” I love his sense of humor. We laughed and all was good. We went home and had a delicious meal that my mom made.

One day when nothing was planned, my sister found a farm with a small amusement park to go to. I was NOT in the mood to do much that day, but I felt obligated. Sometimes I just need my space away from everything. My sister suggested I take the day off. Little did I know that the kids would have one of their best days of the trip. My mom and sister seemed okay with me taking the day off, and they’ve known I’ve done that in the past. It’s just a bit tougher with my sister living far away. I enjoyed time by myself. I looked around and learned about my sister’s new town. I relaxed and drank a lot of coffee. Later that day, I made it home safe to their house. That night, my sister did a mini photo shoot with me and my kids. My niece, Elsa, did my hair and made me feel beautiful. My sister picked out a park and a wall with a mural on it for our pictures. True beauty came out in those pictures. Sometimes my sister and I know each other more than we admit!

I was surprised that none, if any, fights broke out with anyone during our trip, with the exception of me freaking out most days. Maybe some people just kinda know what to expect from me, and they’re okay accepting me like that?

Before we took our trip to Washington, I had a longing to go back to Venice Beach someday. Maybe I needed a change in my life’s direction? In Seattle, I saw homeless people and performers on the streets. I kinda just walked by and thought “awww,” and that was that. I’ve always been intrigued by what happens on the streets, but this time, I just wasn’t in the middle of it.

When thoughts of our trip to Seattle come to my mind, I think of the memories I shared and so many more! Everyday I would just stand in my sister’s neighborhood with awe. Mountains surrounding me! I kinda felt like spinning around with my eyes closed, then opening them! I watched homes being built in their neighborhood and thought about my life being built too! I’m no longer the person I used to be and this trip made me realize that!

Tiffany

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