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

In my 42 years of living, I’ve had the fortune of knowing three people who are ridiculously good at asking questions. A high school friend, a college friend, and someone who’s served as a mentor to me in recent adult years.

Today, I’m summarizing a month of medical activity with a story about how one of those friends asked a perfectly-timed question on a perfectly-timed day…

When my husband finished his third immunotherapy treatment for metastatic uveal melanoma, started complaining about headaches, was visibly distressed, napped all afternoon, then texted “I don’t feel well at all” after I’d been floating down the river with three 13-year-old girls for four hours, questions bumped all over my mind as I sped home from Fall City Floating.

When I found him in bed with chills, nausea, body aches, a headache that had become terrible, and a fever of 103.2, fight or flight set in. I was fighting. Hard. Fighting to the bone for this man, this husband of mine. Here we go. Off to the ER, just as the doctor had suggested.

When they drew blood, sampled urine, ran an x-ray and cultures of blood, but there were no identified sources or reasons for the terrible headache, super high fever, or any of the other symptoms, I was confused. All of this for nothing? No reason? No cause? That can’t be possible.

When they brought in not one doctor, but two, to give us the option of a spinal tap to see if this was viral meningitis or bacterial meningitis, I wasn’t sure what to say. How would I know what was the best decision? Aren’t you the professional here? Clearly this is serious, but if it was super serious, wouldn’t you be telling me what needs to be done instead of asking me?

When we decided against the spinal tap, they gave him Tylenol, an even heavier pain reliever, nausea meds, IV fluids, monitored him for another hour or two, and confirmed he was a “reliable patient” with a caregiver to monitor him closely in the comfort of home, I wasn’t so sure. I was nervous, didn’t feel good that we didn’t have answers, was hoping he would be okay, and hoping I would be the caregiver he needed.

So when we ended up in the ER for a second time in less than 48 hours because a bad-to-the-bones full-body rash developed after the first ER visit, he still had a fever, body aches, chills, headache, and then his face and lips were swollen and they were thinking he needed a brain MRI and the spinal tap we opted against the night before last, I was in full-on something-is-wrong mode.

When there was blood in his urine, his kidneys were showing signs of distress, they brought the head ER doc on board with the case, took a biopsy of the rash, and my husband was admitted to the hospital, I knew this was serious.

When the brain scan came back clear, showing no signs of metastasis to the brain, the fever was gone, and they put him on a 50 mg dose of Prednisone to reduce inflammation in the body, I was relieved. Our worst fears hadn’t come true. It hadn’t spread to the brain. Hallelujah. Some One was helping. Somebody was helping. Something was helping.

When I went home to sleep for the night, and came back to a loopy, pumped up, and talkative husband who HADN’T slept all night because of Prednisone, I was taken aback. Who is this man?! Are we really in the hospital? Did all of this JUST happen? How is my brain supposed to wrap around all of this information? The rash was still horrific. Head to toe, worst shoulders to knee, both front and back of his body. It had turned a darker purple and was visually alarming. They added a topical steroid, and asked us to apply it twice a day.

When they narrowed the diagnosis to “drug-induced lichenoid” or “drug-induced Lupus,” and told us they may or may not need to stop immunotherapy as a result of this severe drug reaction, I wasn’t sure what to think. Another diagnosis? STOP immunotherapy? What does that all mean, and what does that mean for our future?

So when my best friend from college and her husband arrived at the hospital that morning my husband was looped up, pumped up and oh-so talkative after being on steroids for 12 hours, I was so incredibly grateful and relieved. A familiar face. A safe space to talk and be. Therapy, a change of pace for me, my husband, all of us. We laughed, swapped stories, shared lessons and learnings on parenting teenage girls with iPhones, talked work, health and life.

When the first round of laughing and swapping stories was done, my friend and her husband went to the cafeteria to grab lunch. When they returned with salads, sandwiches, yogurt and bananas, my college friend, the friend who ALSO happens to be ONE of those THREE people who are ridiculously good at asking questions, got serious and directed a question straight at me, just for me, the caregiver.

There it was.

On the table.

Sitting there in the quiet space between us.

She and her husband on one side of the room.

Me and my husband in a hospital bed on the other side.

The question lingered a bit before I got around to answering.

“Good question,” I responded, then I began an answer.

Here’s the miracle and moral of the story. Within 10 minutes of my friend asking that one simple question, our conversation led to the heart of the matter. Within 10 minutes, the question she was insightful enough to wonder and brave enough to ask led to the deepest, most pressing question I’d had rumbling and tumbling around in my heart since my husband’s metastatic uveal melanoma diagnosis two months prior. Her question led to the heart of the matter. And that, my friends, is the power of a good friend. It is also the perfectly-timed power of a question for a caregiver.

Do you have a good friend? A really good friend?

Do you have a friend who knows how to ask the very-best questions?

Do you know how to ASK very-best questions?

Truth be told, I don’t know if I’m awesome at asking questions. I can tell you this for sure, I strive to be someone who’s awesome at asking questions. Because I know the power of a GOOD question. It’s more powerful than any statement, any argument, any logic or any matter. Questions are where it’s at, folks.

Here’s what I know from observing my three friends who are incredibly gifted at asking questions.

1. They are all incredibly good listeners. They listen to what is being said, but they ALSO listen to what is NOT being said. They listen to the spaces between.
2. Their timing is impeccable. If you are a good listener, then naturally, the timing of your question will not only be perfect, but impeccable. Listen carefully. Follow someone’s story. Join their journey. And you will see, there are questions that need to be asked, terrain that’s waiting to be explored, questions that are yet to be answered. What you do with someone’s story, how you listen, how you respond is crucial. Don’t just blab on and on. Sit. Listen. Wait. Watch. And your timing WILL be impeccable, too.
3.  Their perfectly-timed questions open doors to truest matters of the heart. Good questions don’t need to be complicated. They just need to be the right questions at the right time. If you ask a simple, but good question at the right time, you are offering space for the other person to respond with authenticity. Ultimately, this offering of time and space will lead to beautiful places. I promise you.
4. They don’t feel a need to fill space with more talking. They just ask the question, provide space for the answer, and then follow-up with conversation and more questions as they feel led. My friends, questions are NOT powerful UNLESS we allow space for authentic answering. This seems obvious, but most people don’t know how to wait and listen for answers. This requires time, patience and self-sacrifice. But I promise you, if you ask a good and right question at the right time, it will reap rewards greater than you would’ve ever imagined.
5. They don’t pretend to know it all. They don’t pretend to have answers. They just sit with you as you answer their question. They listen. They take it in. They offer their divine presence. They don’t promise roses and wine, peace or triumph. They don’t suggest you change your attitude or find perfect peace in God’s perfect plan. They ask, and then they listen. That is the mark of a true friend. That is the mark of a good question. It doesn’t have a right or wrong answer. The answer is the answer. The answer will lead to more questions. The questions will lead to deeper relationship. And if things really line up, the questions and answers will lead you back to the heart of God, your creator.

So she sat with me, that friend. She sat with me in spirit from across the hospital room, and then after she asked that question, after we got to the heart of the matter, after I started crying because that was the question I’d been asking myself for two long months, she joined me and sat with me on a hospital chair made for one. Because that is the mark of a friend. That is the hallmark of a good question. That is the power of a perfectly-timed, perfectly-formulated question for a caregiver. You can’t make this stuff up. You have to live IN it. Be there IN it with someone who’s going through something tough, something unbearable. Just ask a question. And be there to hear the answer. It isn’t a quick process by any means, but it’s beautiful.

We’ve been through a lot in that month since the hospital visit. Tests came back positive for drug-induced Lupus. Immunotherapy has been put on hold; we had to skip the infusion that was scheduled for two weeks ago. Liver enzymes were up, down a bit, and are back up again and not coming down. Scans are scheduled for sooner rather than later. We’ve taken family pictures and are working with a lawyer on updating our wills. We enjoyed a late night of country music ballads on the porch, have a seaside adventure planned for our family of five, and thanks to the energizing miracle of Prednisone, my husband is successfully managing a crazy busy three weeks at work. Tomorrow we go in for scans. Who knows what tomorrow will bring. But I rest now, assured that I have people who KNOW how to ask good questions, questions that get to the heart of the matter, questions that resonate with my caregiver’s heart, questions that meet me in my uncertainty, and questions that remind me that people care, people understand, that people are here for me and want what’s best for me.

May I strive to ASK as many good questions as I’ve BEEN ASKED. May that be my future. A future of ASKING questions that are perfectly timed, perfectly crafted, perfectly held in space and time. May this be YOUR future as well. To ask as many good questions as you’ve been asked.

“How long will it be before you know if the immunotherapy is working?”

“Why are we taking family photos?”

“Have they told you what stage his metastatic melanoma is?”

“How are YOU doing?”

“What is your treatment team’s success rate?”

“How can we help?”

“Is most of the hardship with your husband’s illness?”

“Has someone talked to you about alkaline water, non-hallucinatory cannabis oil, eliminating sugars, eliminating GMOs, essential oils, or Protandim supplements?”

When you’re ill or caring for someone who’s seriously ill, you get asked a LOT  of questions. I can tell you with 100% certainty that most of the questions aren’t nearly as easy to answer as you’d think. And as far as the questions you ask yourself? There are way more questions than answers.

The doctors can’t say for sure when they’ll know if immunotherapy is working. Maybe 12 weeks, maybe 24 weeks, somewhere in between? We’re taking family photos because when somebody in your family is really sick, it’s a good idea to take nice family photos because you want to make sure to have those pictures and memories in case something happens. Well, technically stage IV, but staging doesn’t apply in quite the same way with choroidal melanoma that has metastasized. The short answer is that I’m doing okay, hanging in there, not sure what to think or where this is going. The long answer is four pages in a journal doesn’t describe how I’m doing. We haven’t asked about our treatment team’s success rate because this particular form of metastatic melanoma is so rare that we’ll probably be part of the success rate data set. How can you help? Be creative. Get personal. If you think of us, maybe it’s a nudge to reach out. Texts or encouraging messages work great. Yes, technically the current hardship is mostly around my husband’s illness, but there were too many bad things before this and it feels like there are a bazillion potential life implications because of this, so pretty much life feels like it’s on the line right now. And yes, I’ve heard of that. No, I haven’t heard of that. I’m not really sure what to do with any of that natural, organic, holistic stuff because the doctors told us it would be best to keep things pure so they can measure whether or not the immunotherapy treatment is working, and to not muddy the waters with alternative treatments or other things going into his body. I’m all for dietary changes because that makes total sense, but it’s all a bit overwhelming, so for now, I’m hanging on tight and trying to keep all the medical stuff managed along with every household need, child need and future-thinking need you could imagine.

(Is your head spinning? Mine is. Truth is, sometimes it’s spun so much it’s blank. Let’s just say it’s a mix between a blank brain and head spinning, somewhere in there.)

What do all these questions have in common? They’re questions of life and death. We’re facing a metastatic melanoma diagnosis, so these questions are in our face, right there, no questions barred. But if we’re completely honest with ourselves, we are ALL on our way to death. It’s just a matter of time. Will we live another day? Another week? Another month? A year? Five years? Forty five years? Who knows? Only God.

One thing this journey has taught me is that we’d all better get to living, like NOW. Today is the day the Lord has made for you, and for me. Today is the day to live, for none of us are promised one more tomorrow.

We can ask questions. We can attempt to answer. Heck, we can delay or dismiss real and hard questions about life and death. Or we can face the truth straight on. The fact that we’re able to ask questions means we’re ALIVE. We’re alive, people. So ask the questions. Ask as many as you wish. Ask away, my friend. Questions are awesome, good. But questions of life and death are often elusive. Who knows anyway. Doctors are humans. Treatment isn’t fool proof. We’re all going to die SOME day.

So live. Yes, live. Ask questions. But then live. Take family photos. Take that tropical vacation. Get a massage. Give your mama a kiss. Tell your dad you love him. Tell your friend she’s a gem. Bring a chocolate cake over to your neighbor. Do something wild and crazy. Dive deep waters. Skydive if you want to. Read that book. Write the book you can’t get out of your head. Hug your kiddos and write a secret letter they can open when they turn 21. Take the grandkids for a week. Play your trombone. Drive a convertible, ride a wild horse across the countryside. Whatever it is, do it NOW. We are not promised one more day. Today is the day to live.

Most of you didn’t come here to read my philosophical meanderings on life, did you? I bet you have questions, like “How were Seth’s appointments today, Amy? How did treatment go? Did they give you any idea of what next steps will be?” Let me tell you, friend, then I’ll get on to the business of living. Because my husband is lying in bed next to me receiving his third infusion of immunotherapy for an incredibly rare form of metastatic melanoma. We aren’t fortune tellers. We aren’t God. We don’t know what will happen in the future. We can’t predict what our future will look like, and we can’t give anyone concrete answers about pretty much anything at this point. But we CAN decide to LIVE to the very best of our human ability. Today we will live. Today we will enjoy each other. Today we will remember to reach out and touch one another. Today we will be present, here and now. Today we will not take for granted a single second. Because TODAY is all we have.

So as for those questions y’all have. Here are some answers. These are the only answers we have for TODAY.

Labs came back perfect.

We met with a nurse who explained, once again, how immunotherapy works, all the potential side effects, and what to look out for during the course of therapy. We met with a nurse practitioner for an unusually long period of time. When you have a serious diagnosis they give you a ridiculous amount of time with doctors and nurse practitioners.

During the first two infusions of immunotherapy at Mayo Clinic, Seth received a higher dose of Yervoy and a lower dose of Opdivo. Here at Seattle Cancer Care Alliance, they dose differently. Starting today, on his third immunotherapy treatment, he is being given a lower dose of Yervoy and a higher dose of Opdivo. The goal in making this dosing change is to attempt to reduce toxicity which can cause some very serious cumulative side effects. These differences in dosing philosophies prove that even doctors don’t agree on answers. Although we are not 100% sold on the decision to change dosing, neither approach is “wrong,” so we are going with what the doctors recommend here, which is lower doses of Yervoy and higher doses of Opdivo.

Tonight, Seth is receiving his third immunotherapy treatment with infusions of both Yervoy AND Opdivo. He will receive ONE MORE Yervoy/Opdivo combo treatment three weeks from now, then after that, he will receive infusions of Opdivo only, to reduce the toxicity load that comes with combo infusions of Yervoy and Opdivo. Once he’s on the Opdivo-only treatment, there are more questions. Infuse every 2 weeks at a dose of 240 mg? Or infuse every 4 weeks at a dose of 480 mg? It will be up to the doctors and us to decide what’s best based on Seth’s unique response to treatment. More questions to come.

Another scan will happen mid-September. If the lesions stay the same or shrink, that’s good news. If they grow or spread, then treatment decisions will be made accordingly. It depends. More questions. If the growth is small (like somewhere in millimeters growth from the time it was previously measured), then they might continue with immunotherapy. If the growth is greater than millimeters and more widespread, then they would probably say immunotherapy isn’t working and try something else.

Side effects are being managed well with medication and over-the-counter meds.

We can ask questions. We can problem solve and try to fix all of life’s biggest questions around the round table (or maybe a couch if you want to get comfy). That’s good, healthy and necessary. But for some questions, there just aren’t concrete answers. For those questions, it’s better to give them a rest. Just sit. Breathe. Be. And LIVE.

 

 

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