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.

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Sleeping Your Way Out of Cancer

We all want more sleep, yet most of us are walking around deprived of this essential element our bodies need. When we haven’t gotten enough sleep, our immune system is lower and our brain function reduced. We don’t have energy for the exercise which reduces our risk. Shall I continue? I believe that there’s a high probability the day that first rogue cell entered my body, I was probably sleep deprived. If I had not been, maybe cancer would have never happened.

Sadly, sleep deprivation has become a badge of honor in our society. We all know a person who resolves, “I’ll sleep when I’m dead,” or brags, “I’m more productive because I only get five hours a sleep each night.” What these people don’t realize is a lack of sleep could bring death sooner rather than later and their lack of sufficient sleep actually makes them less productive. I don’t know about you, but I want to live longer and work smarter, not harder.

According to the National Sleep Foundation, the average adult needs seven to nine hours each night. I’m no expert, but I think adding an hour or two if you’re affected by cancer or another illness is a prudent idea. The National Sleep Foundation also states your genes begin to change when you get anything less than six hours a night. Their researchers observed up to 700 different changes that can occur after a week of sleep deprivation.

My truth is, I am preaching about sleep after realizing my own problem two months ago which developed during treatment. Like many of us, I fell into the category of being perpetually exhausted. I would spend my days and nights laying in bed with the TV blaring. Once I was healthy again, falling asleep with the TV continued to be my security blanket and hindering the quality sleep my body craved.

On a long flight home after the holidays, I stumbled along a podcast where the Huffington Post’s Arianna Huffington was interviewed about her book, The Sleep Revolution. She explained how the majority of us are sleep deprived and as a result, not living up to our full potential. Her recommendation was to create a bedtime routine as we do for our children, who wake up with superhuman energy. Yes, some of this has to do with youth, but some of it has to do with the quality and quantity of sleep they get each night.

Taking Ariana’s advice, I began putting myself to bed. I turn on my salt lamp. I take a bath or shower. I dress myself in comfortable pajamas and not the holey, old t-shirt I used to sleep in. I take my pills. I rub some lavender oil behind my ears. I write a list of everything I’m grateful for. I read a book for enjoyment until I start to nod off. I turn the lamp off and fall asleep until the birds are chirping. There’s no cell phone in the room, no TV and no iPad. The verdict – I am sleeping nine hours a night and waking up more refreshed than ever. It’s been two months and I haven’t napped during the day once, which used to be a regular occurrence.

While undergoing treatment, most patients complain about either not having the energy to get out of bed or not being able to sleep at all. I get it and I say, during treatment, you need to do what works for you and addresses the immediate need. If you’re too tired, drag yourself out for 20 minutes of exercise and then back to bed if you’re still exhausted – if you can. If you can’t sleep, try putting yourself to bed like mom did when you were a kid. And when all else fails, talk to your doctor. Let them know how you’re sleeping and any challenges you’re having around the subject. I can guarantee you’re not the only patient who’s ever encountered this problem, so chances are, you’re doctor has a solution for improving the situation. And like everything, be persistent. Especially if you have a history of cancer. One of the best healing mechanisms of the body is triggered by sleep and don’t you want all those mechanisms working at their full capacity?

I can see some of your faces. You might be a parent, someone with a demanding job and/or that person who has never been a good sleeper. I’m here to politely acknowledge your challenge, but then Arianna Huffington, the National Sleep Foundation and I are here to tell you, it’s imperative you prioritize sleep. Put your mask on first before assisting others. Prioritize it above everything else and you’ll be so much better at everything else. And most important, you’ll be healthier and increase your odds of overcoming and avoiding disease.

Check out the National Sleep Foundation’s site, sleep.org for some interesting articles, statistics and recommendations on getting better sleep.

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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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