Archives for September 2017

Whenever I hear of someone newly diagnosed with cancer or other life-changing health issues, I automatically reflect on the two times in my life I was bitch-slapped with a cancer diagnosis.

The first thing I will tell anyone reeling from a diagnosis (for themselves or a loved one) is that for me, the diagnosis was the worst part. Nothing in all my crazy trials, surgeries, ER visits, infusions and scans compares to those initial days and weeks when there was no plan of action. That feeling of helplessness led to hopelessness. As soon as I got a couple opinions and found a treatment option, I felt empowered to kick cancer in the ass.

Here are some tips that helped me as I adjusted to life as a cancer patient. Please note that these tips worked for ME. This is not a MUST DO list. If you identify with these things, by all means, take them. If you don’t, leave them. Nothing irks me more than people, especially the ones who have never been diagnosed with cancer, telling me what to do. I might mention that as the youngest of four, I’ve never really been a fan of people telling me what to do.

1. You don’t HAVE to do anything. I’ve had countless people tell me, you HAVE to read this article, watch this YouTube video, listen to this podcast or read this book. UM! I am fighting for my life right now. I don’t have the bandwidth for this extra reading!!?? A friend of a friend lent me Knockout Cancer by Suzanne Somers when I was initially diagnosed. She told me I HAD to read it. It helped her when her sister was battling breast cancer. I adore her and know she meant well and was just trying to relate, but I wasn’t interested in reading a book about a cancer I couldn’t relate to by the thigh master herself, no offense to Suzanne Somers. I felt guilty for not reading the book. I finally returned the book without having read it. It taught me to never tell anyone dealing with a crisis what to do. Instead, when I hear of someone dealing with a new diagnosis, I use the word tracks, “XYZ book was really helpful to me when I was diagnosed. I highly recommend it but understand that you have a lot on your plate right now.” You could also gift them the book with a note that reads, “Thinking of you. I found this book helpful. I won’t be expecting a book report, however, so if you never read it, no offense taken!”
2. CaringBridge.org is a great resource for you and your loved ones to keep everyone rooting for you informed. This especially took a huge load off my siblings, who were getting pinged left and right by the people smart enough not to ask me any questions. We knew this curiosity was coming from the best place, but it was overwhelming. Both of my sisters agreed that after creating my CaringBridge site, they felt like they could finally keep up with the outpouring of messages. My sister Nicki authored the site and gave access to my siblings Julie and Chris and me. Once I got fighting, I loved being able to do updates myself. I loved being able to communicate with all the people showing their support. When news was too tough, or I was going through a procedure, my siblings would take turns giving updates.
3. Be open to a GoFundMe page (or other fundraising sites). Evidently, the etiquette is that it should be started by a non-immediate family member. My friend Jen set up mine. I’ll be honest, my parents were uncomfortable at first. I think it’s definitely a generational thing. I explained to my dad that it’s not about the money. It’s about giving my friends and family an opportunity to feel like they are doing something to help. And did it ever. I was so humbled by the generous support of so many people, including some I’d never met before. Having the fund took a load off of the financial burden of my out of state travel and lodging.
4. Do or don’t research. You know who you are. I have never once researched my cancer. I’m the type who believes if I hear the bad stats, my mind will cling to them. So I don’t want to know. I’ve also learned stats are shit. Someone has to be the 2%, good or bad. I’ve been on the bad side of that more than once. For that reason, I just don’t want to hear them. Some people, like the older woman named “Sharon” at a small group I sat in with my fellow stage IV uveal melanoma peers, like to do research. And “Sharon” made it very clear that she was better than me for doing all her research and getting herself into a clinical trial. At the end of her rant, she looked me right in the eye and said, “Unlike you, Katie, I think knowledge is power.” GFY, Sharon. You do you. I’ll do me. If research makes you feel better equipped to fight, google away. If it doesn’t, stay away from it. Neither one are right or wrong.
5. Keep living your life. Get a dog! We actually did this. Perhaps not recommended for everyone. I am a social butterfly. I’ve always been on the go. I plan hair appointments, happy hours, and workouts after work. Getting a cancer diagnosis forced me to slow down. Suddenly, I didn’t have the energy to be gone 14 hours/day. Getting Alice was a great distraction for my husband and me. And the perfect excuse to get home after work and spend more time in on the weekends. I also asked my dad slash agent (M.D.) during one of our doctor visits in New York City if he thought it was irresponsible for us to buy a house. He didn’t think it was. Nick and I had just married, and the natural progression is to buy a house. We took this step, and now, two years later, I’m so grateful that we didn’t sit around and wait. Building our house was another welcomed distraction. We also purchased within a mortgage plan that would be feasible if anything were to happen to either of us. Now that we are settled in, we plan and take lots of vacations.
6. Shed toxicity. Fighting cancer takes a lot of time and energy! You know what I don’t have time and energy for after a week in NYC for my drug deal (when I got my trial pills)? Toxic people. Generally speaking, my friendships and family relationships have only strengthened with cancer. But I started to pay attention to the friends who drained me instead of lifting me up. One friend in particular sent me a guilt ridden text message as I was taking off for New York City for yet another scan in 2015. She was upset that I hadn’t been to visit her. This was not the first time I’d been critiqued by her and this time, I drew the line. I blocked her number and moved on. When Sharon had it out for me at the small group, I literally left the conference and got on a plane home. I felt so empowered.
7. Consider getting a second opinion. My first oncologist suggested I start on the only FDA approved drug available for my cancer. I was encouraged to hear of its 20% survival rate. NOT REALLY. I literally didn’t have any other options. But my dad wouldn’t stop there. He researched the best hospitals and what they are doing in terms of clinical trials for my cancer. I don’t think I’d still be here today had we not explored other options. Even now, we continue to network with the top medical professionals treating my illness.
8. Take care of yourself (and get a therapist). I got to a point a year and a half into my marathon fight where I was feeling like I wasn’t taking enough time for myself. I made a bold ask and requested from my boss that I cut down to 4 days a week at work. It was approved. I realize this is a luxury that a lot of companies might not allow, but for me, it was worth the ask. What do I do on my sacred Fridays? I get massages, facials, reiki, acupuncture and lunch with girlfriends. And therapy. Having a great therapist for tuneups is a lifesaver for me. Friday’s are also when I write. I used to feel badly pampering myself. Now, I own it. It’s part of my total health regime.
9. Revamp your diet/supplements. This was a process for me and something I plan to elaborate on in future posts. Diet is difficult when you don’t have an appetite. It’s also hard when comfort food is comfort food. How often have I thought, “I’m eating this effing donut because I have cancer dammit.” Ultimately, I’ve found healthier habits in the kitchen. This is in part thanks to chef lessons my brother got us. I also work with an integrative medicine doctor who has me on a supplement regime. I feel amazing.
10. Control the narrative. I’ve never understood when people announce a health matter via Facebook updates (Just checked into ER! or Going in for emergency surgery… or Something suspect on my scan :(). But, if that’s your jam, have at it. For me, I was very clear with my friends and family in the know NOT to put anything on social media. It was my story to tell. And I was very calculated in how I told it. I waited until we had a plan in place. I went to see my therapist, and she helped me craft the email below. PLEASE feel free to copy and paste any parts of this email that you like. It was such a relief to send this out. My sister simultaneously created a CaringBridge site for me (with my approval on all the copy). I sent the email first to 200 close friends and family. Shortly after, I posted my update on Facebook with a link to my CaringBridge site.

Subject: Update on Me

Dear Family and Friends,

First, I am so grateful for your continued love, support, and prayers. I’ve been getting an outpouring of texts, emails, phone calls, FB messages, etc. Knowing that so many of you care so much gives me strength.

It’s also been overwhelming. Many of you are asking “What can I do to help?” I know this comes from a sincere concern for my wellbeing. Please understand that not responding or a delayed response is by no means an indication of lack of appreciation.

Between the diagnosis, engagement, and move, I feel like I’ve packed 3 years of life events into one month. It’s been a roller coaster — exhausting and humbling and exciting and scary.

Last Friday, I finally had a day to myself to get a grip on the small logistical details in my life (change my address, cancel my cable at my old place, etc.). In addition, I had some quiet time to process the whirlwind of this past month.

Here are a few ways you can be most supportive of me right now:

– Please continue to pray for me, love me, text or email encouraging words but understand I may not always be able to reply.

– Please do not ask me questions about our wedding plans, treatment updates, results, how I’m feeling/doing, and travel schedule. Note: I am thrilled to be engaged to Nick and I appreciate the congratulations on our engagement, but our first priority right now is treatment.

– Please understand that I’m not able to be my usual social self, so unable to do lunch, dinner, coffee or drinks.

In general, know that I will get back to you as soon as I am better and able.

In the meantime, my sisters and brother created a Caringbridge site to help keep everyone informed of my treatment. I encourage you to follow that and message me there:

www.caringbridge.org/visit/katieortman

Until then, please don’t be offended if you get radio silence and, again, know that I appreciate your love and support.

This also serves as a thank you letter for any kind gestures. It’s not like me to not send hand written thank you notes 🙂 but I’m taking a sabbatical from that etiquette for now.

All my love,

Katie

If you have faced a cancer diagnosis, what are some tips you’d like to share that I haven’t listed above?

In this shitstorm of fighting cancer, I’ve learned to identify what I like to call the #cancerperks. This includes strengthened relationships, a flexible work schedule, warm blankets at the hospital, new friends from chemo, a fearlessness to sky dive, dye my hair pink and get a tattoo, a more heightened perspective on life, and the list goes on.

I just completed a weeklong adventure with First Descents, a non-profit organization that sends 18-39 cancer fighters and survivors on kayaking, surfing, or rock climbing adventures at no cost to the participant.

Unsure of what to expect, I did little to mentally prepare for this past week. I had a sneaking suspicion I’d fall in love with this group of strangers, but I was in no way prepared for the intense physical and emotional journey I would experience in the seven days I spent on the river in Tarkio, MT.

First Descents provides participants with nicknames upon arrival. I’m Emoji. Having a new name helped me forget the baggage I carry with my stage IV, incurable uveal melanoma. I met Broccoli Head, Oasis, Specs, Dare Devil, TZ, Swerve, Orca, Kimchi, Backdraft, Trucker, Sweet Pea, Toastie and Goldie.

First Descents provides a whole team of guides and volunteers who ensure our week is epic. Mamas Goose and Picasso were our house moms. They made sure none of us lifted a finger during the week. They picked up after us, bussed our dirty dishes, gave us back rubs and Tylenol and countless hugs.

Hollywood was our dedicated photographer. He captured moments in the kitchen, on the river and by the campfire. Scrat was our M.D. He spent time with each of us on Day One to understand any physical obstacles we had and was by our sides the entire week, again, on land and river. Big City and Jo Bear Stone Fist made us nourishing breakfasts, lunches, snacks and dinners every day. I have never eaten so well in my life.

Farkle Sparkle and Quickie, both top kayakers in the country, were our team leads. They pushed our limits on the water and around the campfire and were a dream team. They, along with Uncle Dirt, Jus, Skinny Hips, Sir Cuddles and PK, took the fourteen of us on the river and taught us so much about the sport of kayaking and how it parallels our lives and relationships with cancer.

Before our graduation ceremony on Friday, PK, our toughest guide who loves so passionately, gave a moving speech after lining our blue, pink, red, yellow and green kayaks in the left bank of the river. He told us that he hopes when we see a river in the future, we will look for the eddies, the line and the rocks and remember the metaphor the river is to our lives. We can go in with a plan based on what we see, but things will happen to alter that plan.

He talked about kayaking being a challenge by choice and that our cancers are a challenge with no choice. He was proud of us for how much we’d each grown in the past week. He reminded us that graduation symbolizes leaving something behind and starting something new.

“Eddies are like a break in life. When things get tough, remember to edge over and take things little by little. Life is the greatest adventure, you never know what is going to happen,” he said.

We processed down the second to last rapid one by one with our guides waiting in the eddy to cheer us on. We locked kayaks in a tight circle, and the twenty-seven of us carried each other through the last rapid of the week.

On Friday night, we talked about what we will take with us from the program back to our daily lives. Trucker talked about the river. It is dark and scary but also brings so much joy, like cancer.

I shared that the program reminded me of how precious this life is. It jolted me back to appreciating the love and laughter in my life and the gift of cancer – the gift that has taught me to see this life in the most beautiful way.

Just like I knew it would happen, the last day was filled with tears, hugs, and I love yous. Oasis told me on the way to the airport this was one of the best weeks of his life. It truly was. Spending seven days learning a new sport and forming a bond with my First Descents family released a slew of emotions I want to bottle up forever.

Dare Devil said it best in a Facebook post, “Life is so much clearer now, and I truly am learning to live life again without the negativity and fear of what if…. Cancer isn’t a death sentence it’s a way of saying it’s time to wake up and truly live each and every moment like it’s your last.”

Now that we are back to reality and facing scans and work and the demands of real life, we are in constant communication to support and validate each other. It feels so great to be this understood.

Words cannot express the gratitude I have for this program. The week was flawless and unforgettable. I felt lucky to have cancer as I learned so much about myself during the past week. As a group, we shed anger, fear, anxiety and lots of tears. We embraced life, the river, new challenges and each other.

First Descents truly is the greatest #cancerperk.

In April of 2017, I was honored by the Melanoma Research Foundation at their annual gala. I was given the opportunity to speak. You can view it here. Text is below.

On behalf of Irv, Courtney and Molly, thank you to the Melanoma Research Foundation for this honor.  

Tonight I’d like to share with you some insights I’ve gained over the course of my four year battle with ocular melanoma. I’m going to start with an overshare. I wet the bed when I was little. But we’re not talking little, we’re talking third-fourth grade / old enough to be going to slumber parties little. It was embarrassing. And certainly not something I ever thought I’d share this publicly. 

My aunt pulled me aside during a family gathering and told me she heard I was having problems wetting the bed. I hung my head in shame and mumbled yes. She told me she had an idea she wanted me to try. Desperate to find anything to fix this problem, I asked her what it was.  

I want you to program yourself every night. You must keep it positive though. Say 100 times before you fall asleep: I will stay dry. 

“Okay,” I agreed. I never wet the bed again. Thank you, Aunt Peg. 

Fast forward to 2.5 years ago. I’d recently learned my ocular melanoma had made way to my liver. Two days after my metastatic diagnosis, my boyfriend asked for my hand in marriage. A few short weeks later, I was 33-years old, newly engaged, and alone in New York City for 5 weeks enrolling in a clinical trial at Memorial Sloan Kettering.  

I had a number of visitors while I was there, and I worked fulltime out of my company’s New York City office. But when I was alone, I was completely petrified. I started feeling a stronger connection to Jesus, as I was facing this life-threatening disease at the same age He was when the He died on the cross. I felt Him walking by my side every day in New York.  

I started to remember what my aunt taught me. As I lay in my noisy New York City apartment every night, I would say 50 times, Heal me, Jesus. And another 50 times, I trust you, Jesus.  

That’s not to say I always maintained a positive attitude. I’m a planner, a project manager by trade. I found myself planning my funeral in my head. The recessional song obviously being “I’ve Had the Time of My Life” from the Dirty Dancing soundtrack. And how am I going to source a zebra printed casket?  

Eventually, I snapped out of that. I started repeating additional mantras during the day like: “Every cell of my body is healthy, balanced, and love” and “I know what it’s like to be healthy.”  

I believe these positive words have an impact on my health.  

In addition to attitude, gratitude keeps me going strong.  

During one my treatments here in Denver, I was in a room with a 75-year-old man named Ron. We joked about “Who wore it best” while comparing our bald heads. We got to talking about the fight and sharing our secrets to keeping alive. Before I left that day, he asked me, “Do you know what today is, Katie?”  

“No,” I replied. “What is it?” 

“A gift,” he told me.  

I left the hospital that day feeling like the luckiest girl in the world. Ron and I still keep in touch. He reminds me of the importance of gratitude.  

I am most grateful for my support system. My doctors and nurses near and far have been incredible. Here in Denver, I’d like to thank Doctors Hovland, Reiner, Nutting and Gonzales and their staff, for taking such great care of me. Dr. Hovland and his team gave me an amazing beaded zebra knowing that is my spirit animal. Dr. Nutting prayed with me before both of my procedures. You don’t get that kind of care every day, and I would know.  

My parents are medical professionals and have been two of my biggest cheerleaders in this fight. I call my dad my agent. He’s done countless hours of research to ensure I’m getting the best treatment possible. He and my stepmom have both driven or flown cross country to be with me in times of need. Thank you, Dad and Shirley.  

My siblings are my greatest allies in life. They have also sacrificed so much to be with me during appointments including travel to New York or to help a sibling with kiddos, so that I’m not alone during treatments. Their children light up my heart. Thank you, Don, Julie, Ron, Nicki, Nick, Jenni, Scott, Chris and Polish.  

My friends have dropped everything to be there for Nick, our dog Alice, and me. They set up meal trains, take care of our dog, drink wine with me, get pedis with me, golf with Nick, and take me shopping for new lipstick when my hair falls out. Jen, Scott, Sarah, Justin, Candace, Sean, Heather, Liz and Lynn – thank you for everything.  

My husband, Nick and Miss Alice. I am truly at a loss for words for you, my precious immediate family. Since my surgery, my eyes have appeared as two different colors. When Nick and I decided to adopt a dog, Alice, with her two different color eyes, was the obvious choice. I love that in all of this, you make me laugh, hard, every single day, both of you. I love our life together. I am so grateful for your love and support, you silly sausages. 

My therapist asked me when I was first diagnosed to answer quickly the following question. “There is a light inside of you. Is that light going to continue to shine, or do you think it will burn out?” 

I lied straight through my teeth with such conviction, “It will continue to shine.” 

She said, “Good. People seem to know deep down.” 

I didn’t think that back then. But through my faith, my family, my attitude and gratitude, I truly believe it now.  

For those of you wondering, my past two scans have shown shrinking and stability. 

Thank you again for this great honor. Please raise your glasses. I’d like to toast all those fighting melanoma – may your light continue to shine.