Tag: lung cancer

Cancer Book Club & Other Favorite Reads

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One of my New Year’s resolutions was to break my technology addiction and my first course of action was banning devices from my bedroom. Instead of watching something on my iPad as I fall asleep, I replaced the activity with reading (real books) and have never felt more well rested, energetic and sharp. It’s made me realized how much I’ve missed reading like I did when I was younger. Plus, I’ve read over 45 books this year!

Naturally, some of these books are about cancer.  They consist of either memoirs or “how-to’s” on surviving. Below you’ll find a random, incomplete list my favorites to-date to serve as suggestions if you’re looking for inspiration.

rufusDie Young With Me by Rob Rufus. Read this if you’re a young adult impacted by cancer, lover of punk music and/or don’t subscribe to the kumbaya-ness that often accompanies illness. Personally, I’m a little partial to this story since Rufus and I both live in Nashville and are cancer surviving writers, who aren’t afraid of a few f-bombs.

When Breath Becomes Air by Paul Kalanthi. It’s sad, it’s profound, but most of all, it’s beautifully written. Read my complete review here.

Dying to Be Me by Anita Moorjani. Read this book if you believe in miracles or want to believe in miracles by a first hand experience.

radzwillWhat Remains by Carole Radzwill. Another weeper, but the prose is incredible. I found this memoir of loss an example of what our caregivers endure along our side because they are often the forgotten trauma survivors.

Crazy Sexy Cancer by Kris Carr. Read this if you are a newly diagnosed woman and/or interested in means of healing through food, alternative treatments, etc. Better yet, watch the documentary or an episode of Carr on Super Soul Sunday.  

41b5V0a3aFL._SX326_BO1,204,203,200_I Have Cancer and Never Felt Better by Tracy Krulik. Check this out if you’re a fellow pNET, especially if you’re about to go into surgery. I devoured this before my distal pancreatomy and it provided me with many important questions I would have not otherwise asked.

Now, this all being said, I have set up some rules for cancer reading, which may not always be a relaxing escape.

  1. Memoirs only before bed. Rule 1a – the person has to be alive. Rule 1b – it can’t be a section where the subject is talking about a similar trauma (chemo, nausea, etc.) Bringing those feelings and memories to the surface have no place in my bedroom.
  2. No cancer reads on vacation. Time away is officially a cancer-free zone in my family.

Don’t want to read about cancer? Yeah, me neither. Here are a few of my favorites:

The Namesake by Jhumpa Lahiri. This is my all-time favorite book, ever. The prose is out of this world and tells the story of an immigrant family’s struggle of retaining their culture versus assimilating to America. If you like this book, Lahiri’s Interpreter of Maladies is also worth the time. It was Lahiri’s first book and won the Pulitzer Prize if you needed any further nudging. There’s also a movie based on The Namesake, which, for the first time ever, does justice to the book.

The Moth Presents all These Wonders: True Stories About Facing the Unknown. Read my complete review here. Okay, so there are a few stories about cancer, but they are happy ones.

patchettCommonwealth by Ann Patchett. God, I love Ann Patchett. She lives in Nashville and owns a bookstore I frequent. Between you and I, I sometimes hang out there just to catch a glimpse of her. I wouldn’t be surprised if she thinks I’m a stalker. I just kind of want to soak up some of her genius by breathing the same air.

Hillbilly Elegy by J.D. Vance. An interesting memoir of escaping and growing up in poor Appalachia.

Behold the Dreamers by Imbolo Mbue. A novel an African immigrant family trying to make it in New York City. While this story is fiction, I think it portrays the sacrifices and lengths that foreigners will go to to achieve the American Dream.

If you’re looking for more suggestions, check out my Goodread’s list, which has the last few years of books with ratings.

Also, my “to-read” list is primarily comprised of recommendations from others, so if you have a book that’s touched your life, please share by commenting below.

Up next in the cancer category is Radical Remission by Kelly Turner, Everyday I Fight by Stewart Scott, A Walk with Purpose by Michael Becker and The Art of Not Giving a Fuck by Sarah Knight.

Happy Reading!

A Day in the Life of a Cancer Patient

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Last Thursday, I was driving to the Cancer Center for my monthly injection of Lanreotide and had an idea to photo document the day in the life of a cancer patient. Then I decided against it because I felt uncomfortable asking the staff for selfies of my activities and now, I regret it.

As I was leaving the hospital, I checked Twitter to see that the American Healthcare Act (AHCA) passed in the House of Representatives and I was flooded with so many emotions – fear, anger, worry, stress. Isn’t it enough I have to deal with cancer?

So, in lieu of a photo documentary, I still think there’s some value in posting the play-by-play of my day to provide a small glimpse of what illness suffers endure. However, it should be noted that in the big world of cancer, I have it pretty easy.

6:00 a.m. Rise, drink coffee, wake up, clean up.

7:00 Shower, apply lidocaine cream to port to numb the 3/4 inch needle phlebotomist will stab into my chest soon.

8:00 Out the door. What should take 20 minutes, takes 50 thanks to morning traffic.

8:50 Arrive, park and walk to the hospital.

9:00 Check-in, #1.

9:15 Check-in, #2. I confirm my address, insurance, emergency contact and complete forms, noting any new symptoms since my last visit, including a demographic section, where every month, I have to check the box indicating I am still white. I think these forms are dumb, so I stopped filling them out months ago.

9:30 Blood draw/Chest stabbing. As I’m walking into the lab, I tell the phlebotomist that my tube is the white one in the fridge. Yes, I have my own tube and section in the fridge.

9:45 Wait for the Nurse Practitioner.

10:15 A medical assistant takes me to an exam room and records my blood pressure, heart rate, weight and asks me the questions on the forms they gave me, which is another reason I stopped filling them out.*

10:45 Even though my appointment was at 10:00, the Nurse Practitioner strolls in late. She’s scheduled for patients every 15 minutes, which is completely unrealistic and why she’s late every single time. She asks me all the questions on the form I refuse to complete and confirms, “Yes, I still need the shot,” I’ve been getting every month for two years now.*  Cost of the 15 minutes – $252.

11:00 I make a side trip to the records office to get the disc from my most recent scan since I get to repeat this process with my specialist in New York City in a couple weeks. I fill out the form and tell the clerk I’ll be back in a couple hours.

11:15 Arrive at the Infusion Center, Check-in #3.

12:30 p.m. I’m called back to my infusion room. The medical assistant takes my blood pressure, heart rate and asks me the form questions…again. The nurse shows up moments later and asks me the same questions…for a third time.*

1:30 My shot finally shows up from the pharmacy but needs to sit at room temperature for 30 minutes. Cost of the shot – $18,397.20.

Somatuline_image_1

The tiny pic doesn’t do justice to the needle, but trust me, it’s muy grande.

2:00 The nurse administers the shot. It is the thickest needle any of them have ever seen and is injected into my butt-hip area. It sometimes leaves a nice lump, so we alternate left and right cheek each injection.

 

2:02 I’m now in line to Check-out.

2:15 Pick up the disc of my recent scan.

2:30 Arrive in my car, check Twitter to see the AHCA bill has passed the house is a step closer to reality.

2:45 Arrive at home and call my Senators.

What the daily account does not include is the conversation my husband and I had at dinner, where we re-agreed to move our lives to his home country of France if that’s what it takes to keep me alive and well. For this, I am so lucky. Most sick American’s do not have this option.

What the daily account above does not include is waking up several times Thursday night and not being able to fall back to sleep because I was worried for my well-being and the well-being of other people who will go bankrupt and/or die because of this bill.

What this daily account above does not include is the emotional and mental side effects from illness.

I could use this platform to share my specific views on the debate, but I won’t. It’s all been said and I do not have anything new to add to the debate. All I can do is share my story with my legislators in hopes that it will inspire them to do the right thing for the citizens of the country which boasts itself as the greatest on earth.

If you’re impacted by illness (and who isn’t), I encourage you to contact your Senators. Share your story. If you’re not sure where to start or what to say, I recommend https://5calls.org/#about where they provide your representative’s contact information with scripts on what to say.

*The snark is directed at the system and not the staff.  They are simply following protocols and are 110% awesome.

 

10 Lessons for the Newly Diagnosed

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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.