Two Approaches to Scanxiety

Ugh! Getting scans is a necessary evil along the road of cancer. It is my opinion, terms like scanxiety should be clinical diagnoses where it’s affected should be prescribed copious amounts of sleep aids, anti-anxiety meds and painkillers. It is real and it is no joke. I once asked a more seasoned survivor, “Does it ever get easier?” They just laughed, then immediately stopped and with the straightest, most serious face, said, “No. No, it does not.” And I’m here to attest that three years in, it has not gotten easier, but I have learned how to manage the anxiety.

Scan Week 2014
Ugh! My scan is on Friday. I clear entire schedule this week, so I can worry in solitude. I don’t want to tell anyone this is the week because they’ll spend Friday sending me texts like, “Thinking of you” and I won’t know how to respond because I know I have cancer and I know it’s everywhere. In fact, why don’t we just skip the scan, since I know my doctor’s going to tell me there’s nothing more to be done. I spent the rest of the day eating McDonalds, in bed, watching an entire season of “The Real Housewives of New York”. Waking up on Tuesday, I decide to treat myself with a shopping trip. While shopping, I have thoughts along the vein of, “Why are you even buying clothes anymore since you’ll be dead in a few months anyway. It’s a waste of money.” I leave the mall, having bought nothing. I go home and take a nap. Wednesday, I plan my funeral complete with instructions, playlists and who should be alerted. Thursday, I start a shared Google docs folder with all the instructions for home since I know when I die in a couple days it will be super important for my husband to know that trash day is Monday and not to forget to vacuum under the bookshelf because that’s where cat hair hides. Friday, In the shower, I tell myself, “I don’t even care if I have cancer”. I drive to the hospital, get undressed, jump in the MRI machine. It’s taking longer than normal. I picture at least ten doctors in a room with worried faces where they’re saying things like, “She’s a goner.” When the MRI concludes, I notice the technician won’t look me in the eye. Yup, confirmed, I should get my affairs in order. Whatever, I don’t even care if I have cancer anyway. I stop at Taco Bell. I’m starving thanks to the no food for 6 hours rule. I cry the whole way home as I stuff tacos in my mouth. I didn’t protest when my oncologist scheduled this test on Friday, which means I get to continue post-traumatic scan anxiety throughout the weekend, ruining both my weekend and everyone who’s around me. By the time my doctor’s appointment occurs the following Thursday, I’m back to, “I don’t care if I have cancer.” My oncologist comes in and wants to small talk. Make a note that should there be a next time, I will not even say hello and tell her to cut to the chase and tell me how long I have.

Scan Week 2017
Ugh! My scan is on Friday. Resist the urge to cancel all your plans. In fact, do the opposite. Look at your calendar and make sure you have something fun planned every single day. I schedule lunch time yoga Monday thru Thursday. I go for a walk every morning. Knowing it’s going to be beautiful on Tuesday, I call a friend and ask if she’s free to meet and color at the park, which is something we talked about months ago. She is and we enjoy a few hours chatting and coloring. Wednesday, I go to Target and buy a small gift for a friend who just accomplished a major goal. I write her a nice note and put the gift in the mail. Thursday, I clean and organize the garage. “Idle handles are the devil’s workshop.” Friday rolls around and I did not sleep good. My MRI isn’t until 10:30, so I lay in bed watching Jimmy Fallon. A big indulgence, plus I can’t eat or drink anyway. At 9:00, I rise, shower and put on a nice outfit. I do my hair and make-up. Look good, feel good. I get to the hospital and they’re on-time. I jump into the MRI machine and notice how much my meditation practice has come in handy during the 35-minute study. I just lay there and focus on my breath. When I exit the room, my husband’s in the waiting room. We go have a lunch. I don’t get McDonalds. We return to the waiting room until the nurse calls us back. I’ve since learned I can just tell my oncologist I don’t want to wait the weekend. If she schedules my scan on Friday, I want my results Friday. Without protest, she obliges.

So, the lesson in these two stories is….if you suffer from scanxiety, having a plan for the days leading up to your scan is absolutely critical. Be sure to develop this plan before scanxiety starts. Write a list of things that make you happy and are fun. Don’t hide. Call a friend – that’s what they’re for and I know they’d love to be a part of your scanxiety reduction plan. Communicate with your doctor and make sure they know you don’t want to wait. Implementing these tactics hasn’t made my scanxiety disappear, it’s just made me get through the week with less torture.

Cancer Camp Reunion

This is the story of three, thirty-something girlfriends from Denver. Let’s call them Harry, Lloyd and Elle. They had wonderful marriages, adorable children and flourishing careers. You might say they had it all.

And then they all had breast cancer.

First to be diagnosed was Lloyd. Months later, Harry. After Harry, it was Elle.

Shortly after her diagnosis, Elle found a bracelet that said, LIKE A BOSS. She thought of her daughter and decided that would be her mantra for facing this disease. So the three friends got their forearms tattooed and the “Breast Friends” were born. From what it sounds like, they had a good time while confronting an experience, I would describe as the opposite of a good time. I recall a story of them sitting on Lloyd’s front porch laughing hysterically at the terrified expressions of passersby – three bald, young mothers watching their children play outside as if nothing about them was unusual.

img_1865Elle had a crazy idea that the three of them should go to a week-long surfing camp with First Descents, an organization that takes young adult cancer survivors on (FREE) adventure trips.  So, the three of them signed up. Then, Elle got really sick. Then, she died.  She was 36 and left behind two beautiful babies and a husband. Harry and Lloyd spoke at her memorial saying how she would be their lighthouse.

Harry and Lloyd knew they had to go surfing to honor Elle and so they joined thirteen other cancer survivors in California in September 2016. Their residence for the week – Pigeon Point Lighthouse. The universe works in poetic and mysterious ways.

1476993212Some of the most definitive moments of the week were not those spent conquering waves, but were when Harry and Lloyd spoke of Elle. They brought some of her ashes to be spread at the lighthouse and at Cowell’s Beach where we learned to surf. On the last day, our entire group was in the water, sitting in a circle on our boards, having a moment of silence for Elle, when a harbor seal popped its head out of the water. Call me crazy, but that was Elle and she got her wish – she was surfing in the water with her friends.

This past weekend, my husband and I voyaged to Denver for Easter. I was looking forward to visiting a new city and Rocky Mountain National Park, but I was most excited to have dinner Saturday evening with Harry and Lloyd. Over big bowls of ramen, we laughed and reminisced about our week of surfing with First Descents. Talking about the other campers, the funny moments and the mandatory nicknames (hence the story behind two comedic girls called Harry and Lloyd). We talked about how we loath being labeled as brave or courageous, after doing what anyone else would have done in our situation. We talked about people in our lives who have been recently diagnosed – children, mothers, friends, young women.

The injustice of cancer is mind-blowing and reminded me of a quote in Susan Sontag’s, Illness as Metaphor:

“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

And by having been citizens of that other place, Harry, Lloyd and Mitten (that’s me), decidedly agreed that because of cancer, we are all better people. And that to best honor their friend and the others we’ve lost along the way, we are obliged to be grateful, compassionate and out living our lives to the fullest, every day…like a boss.

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If you’re interested in learning more about First Descents, check out their website at www.firstdescents.com. Or if you’d like to financially contribute to the Like A Boss Team, click here. To date, Harry and Lloyd have raised over $13,000 – enough to send six other survivors to a week-long camp. Click here to read about my week with First Descents.

10 Lessons for the Newly Diagnosed

Anytime a friend or family member knows someone newly diagnosed, they get sent my way. I love this because I believe in mentorship, but I hate it because it’s a role I never wanted. Actually, I don’t think anyone wants this job.

When I connect with the referral, I often find they’re looking for words of wisdom and my reaction is, You’re coming to me? OMG! I have no idea what I’m doing. But, when I take a step back and meditate on the years since my diagnosis, I realize that I have acquired a significant amount of wisdom on navigating the maze, so below you’ll find some of my biggest lessons learned along this crazy road:

  1. Prepare for bad days. They’re inevitable. I created a list of things to do on when cancer or life gets me down. On my list: take a walk, call a friend to hang out, go to yoga or for a run, watch Jimmy Fallon Lip Sync battles, you get the idea. Doing these things doesn’t always turn a bad day good, but aides in soothing me so it’s not as torturous. But guess what, there will be good days too. Enjoy those.
  2. Choose your vocabulary. I hate being called a “cancer patient” and prefer “cancer survivor”, which I assigned to myself on diagnosis day. I also decided not to claim cancer by choosing to refer to it as “the” cancer and not “my” cancer. Sure, it’s a play on words, but words matter and have power. I often roll my eyes at cliche verbs such as fighting, battling and nouns like warrior, but I can see where others find great power in these words. This is your experience and you get to choose the words to describe what you’re going through – not prepackaged phrases or cliches.
  3. Limit your research. Yes, you read right. Google’s search results can be overwhelming. While being an informed patient is critical, there comes a point where it’s too much. Set a timer for an hour, do your Googling and then go live your life. It might even be helpful to plan your research at a specific time of day. I don’t Google in the evening. Otherwise I stay up all night thinking. I Google before something fun, so my mind does not dwell on the results for too long.
  4. Prepare to learn the meaning of friendship. There were people who showed up for me, who I considered acquaintances before illness. They were people who called, texted, sent me cards, cooked me dinners and took me to appointments. Words cannot express my gratitude for these angels and I would go to the ends of the earth on their behalf, as they did for me.There were also friends I considered close, who went missing in action. I’d be lying if I said it didn’t hurt. I understand – cancer is uncomfortable and not fun, but I now know the true meaning of friendship.
  5. Think about what you will do on the other side. I can not accept that we are given these obstacles for no reason. I think it’s important to discover meaning or the lesson in a traumatic experience. Do you want to help others affected by the disease? Awesome. Or do you want to erase the experience from your memory? Totally understandable. Whatever category you fall into, do something! Take the trip you’ve been talking about for years. Write the book. Run the marathon. Jump out of the plane. Make amends with the family member. If cancer teaches us anything, it’s that there are no guarantees, so minimize your chances of regret.
  6. Get a therapist. Your doctor is leading the team on physical healing, but you can not ignore the mental, emotional and spiritual aspects. Cancer is a torturous mental challenge and having an outside opinion has been instrumental to me. Ignore this and you’ll miss important aspects of healing. Plus, it’s sometimes difficult to talk to those so close to you about big fears that accompany the disease since they themselves are so emotionally invested in you.
  7. Find a support group. It does not have to be traditional. It just has to work for you. I still have never been to one where you sit in a circle and cry, but I have met countless lifelong friends through a weekly writers workshop and a young survivors non-profit. I also participate in an online group of people with the same disease. It’s here where I found my specialist and often research treatments. I always thought of support groups as therapy, but they can also be a wealth of information.
  8. See a leader. No one will hold your best interests at the top of their mind the way you do and having the right doctor is game changing. Life saving, in fact. Don’t settle on the first doctor who crosses your path. Visit at least two or three. More if your case is rare. Find someone who’s doing research on your disease and not someone who’s following the pack. It took me several opinions to find a specialist who knew what to do with a one in 10 million diagnosis, but once I found him, my world changed. He disagreed with all the previous opinions and I know I am alive today because of his experience. I travel from Nashville to New York City to see him every six months and often look forward to hearing the research in his pipeline.
  9. Be relentless. It is exhausting and the only time I’ll ever refer to disease as a fight is in reference to navigating the medical maze. My doctors call me relentless and I take it as a compliment. I do not leave them alone (respectfully) and because of this, they return my call or email quick.
  10. Practice gratitude. It wouldn’t be a post from me, if I didn’t mention gratitude at least once. There will be days it will be hard to be grateful for anything, but believe me when I say, there is always something to be grateful for, even if it’s being alive, which is a privilege denied to many. Write these down. Re-read them when times are tough.

I’ve also learned these lessons are constantly shifting, evolving and revealing themselves. Cancer survivorship is a process and I am a grateful participant.  I wish the same for you.

Read my other Cure articles here.