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.
- 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!”
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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?