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.

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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.

8 Tips from a Professional Surgery Recoverer

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As featured on curetoday.com

I’m becoming a professional surgery recoverer. It seems like for the last three autumns, I’ve had surgery and spend the season looking at the leaves change through a hospital window or on my slow, prescribed daily walks. I recently read in each person’s life, they will start over many times and I believe whoever came up with this probably had several surgeries.

In my previous life before cancer, I was a marathoner, triathlete and was always trying to push myself to the next level. Going from running 26.2 miles to not being able to walk down a hallway has been a humbling experience.

In September 2014, I had a distal pancreatomy and splenectomy to remove a tumor on my pancreas. In October 2015, I had a liver resection and cholecystectomy to remove tumors in my liver. Then this October was the surprise surgery – a bowel obstruction, which is considered a complication from my liver operation. Something about the body not liking open spaces and my small intestine moving into that space.

Strangely and fortunately, my body seems to recover quite well from these surgeries. Youth and being physically fit are on my side, but I believe more so, it’s the determination and figurative steps I take after each procedure. So, here are a few tips from a professional recoverer on abdominal surgery.

  1. Ask a thousand preoperative questions. What can I expect from my incision? What kind of physical difficulties do patients experience? What should I expect when I wake up? Will there be drains, IVs, tubes? What will we do to manage pain? Will I be closed up with staples or glue? In my experience, surgeries are so routine for surgeons they don’t realize we don’t know these things. Waking up with an unexpected tube up your nose or a larger incision than you thought can be upsetting. Therefore, ask every question that comes to mind. I’ve found connecting with others who have been through the surgery to gather questions can be helpful too.
  2. Lean on your nurses. Can we just take a moment to recognize the awesomeness of nurses? They are the foot soldiers and we and doctors could not do it without them. Most nurses will go to bat for you. If something isn’t working, ask them to advocate to the doctors on your behalf or ask what they recommend. After my first surgery, a nurse recommended a trapeze when I expressed how hard it was getting in and out of bed after having my abdominal muscles cut through.
  3. Walk…..a lot. This is a tough one, but critical on getting yourself discharged. Set some goals. The day after surgery my goal was to walk to the end of the hall and back three times throughout the day. I only made it twice, but the next day I did it four times. I’ve found activity trackers are helpful. I’d set an alarm and try to do a bit more each day. Also, walking is useful in getting your digestive system moving when it’s been put to sleep by pain meds, anaesthesia, surgery and the change in diet.
  4. At Home.  Being confined to a hospital room makes me crazy.  I know I’m not alone when I say how wonderful it is to get home after a stay.  However,  coming home presents a new set of challenges. After getting used to a moveable hospital bed, my stationary bed was tricky. I actually found the couch to be more comfortable. Some people find it easier to sleep in a recliner or gravity chair. Also, if you’ve been sent home with drains, my thoughts are with you. They are annoying. I always safety pinned them to my shirt. Recently, a friend and breast cancer survivor shared a zip up hoody with interior drain pockets. What a revolutionary idea. If something is bothering you at home, don’t just accept it, a quick Google search or call to a nurse could change your world.
  5. Keep walking….a lot.  Your walks are not over now you’ve left the hospital. In fact, this is where you really need to increase your daily steps, endurance and strength now you’re no longer confined to a hallway. Again, the activity tracker is great. The day I came home from the hospital, my goal was to do 1,000 steps. The next day, I went to 1,500. Some days it would take me several outings. A month from surgery, I finally made it to 10,000 steps. Now, I’m working on increasing my endurance by walking for longer stretches of time.
  6. Don’t ignore the mental and emotional.  This is also a hard one. After every procedure, I find myself struggling to regain my ingrained positive attitude. I’ve come to realize a pattern of PTSD (post traumatic stress disorder) after I come home from a surgery. Recognizing this, I’m sure to combat it with extra sessions with my therapist, making plans with friends and planning daily trips out of the house. It’s easy to stay in a mental slump when you’re alone and confined all day, so as painful as it might be, just do don’t do it.
  7. Go to physical therapy. I feel doctors don’t recommend this enough. I went to PT after my first surgery and recovered fast. With my second, I decided to forgo physical therapy. Months post op, I wasn’t as strong and my endurance was nonexistent. I finally submitted to PT and within a few weeks I was back on track. This go around, I cringe at the idea of spending so much time at the therapist’s office, but know it’s the way back. This is also the safest way to regain strength. Attempting on your own could result in hurting yourself with a hernia and what you don’t need after surgery is another surgery. Thanks to physical therapy, 6 months after I completed treatment, I hiked 250 miles across Spain with a backpack. If that’s not a testimonial, I don’t know what is.
  8. Practice gratitude, patience and mindfulness. No matter how major or minor the operation, I notice how much quicker I recover when I give myself a break.  I do this by mentally listing ten things I’m grateful for each day.

So, here I am, a couple months post-op and doing pretty good. I walk for an hour everyday and start physical therapy in the new year. After I get the green light from my therapist, I plan to work my way back up to daily yoga and sign up for a half marathon in the spring. There are survivors out there defying the odds by running marathons, completing ironmans, climbing mountains and biking across countries. These acts inspire people and are proof our bodies are capable of much more than we can even imagine. I’d rather strive to be these people than submit to cancers quest to stop me.

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