How to Make it Okay, Even When it’s Not

 

“Stanford internist Lucy Kalanithi is the widow of neurosurgeon and writer Paul Kalanithi, who was diagnosed with Stage IV lung cancer at age 36. In Lucy’s 2016 TEDMED Talk, she shares the perspective their family gained during Paul’s difficult transition from doctor to patient. Shortly after his diagnosis, Paul wrote about his transformation from doctor to patient, and explored what makes life worth living in the face of death in his poignant memoir When Breath Becomes Air. After Paul died in 2015, Lucy completed his memoir and wrote its powerful epilogue.” (Bio source: TEDMED)

 

“Being human doesn’t happen despite suffering, it happens within it. When we approach suffering together, when we choose not to hide from it, our lives don’t diminish, they expand. I’ve learned that cancer isn’t always a battle. Or if it is, maybe it’s a fight for something different than we thought. Our job isn’t to fight fate, but to help each other through, not as soldiers, but as shepherds. That’s how we make it okay, even when it’s not.” – Lucy Kalanithi, TEDMED Talk, 2016

May we all be lucky enough to have a doctor like Paul or Lucy Kalanithi shepherding us through illness and suffering.

Read my blog post, Thoughts On, When Breath Becomes Air.

 

A Day in the Life of a Cancer Patient

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.

 

The Collateral Beauty of Illness

 

I’ve wanted to see the movie, “Collateral Beauty” since it’s release last year and finally watched it this weekend. There are times when a movie, song, writing, painting or another piece of art generate a profound impact in us and I would add this film into that category.

 

The main character, played by Will Smith, is suffering from tremendous grief. The movie tells the story of his business partners and friends going to great lengths to help him. These people also learn important life lessons as well. The underlying themes are love, time and death. Cancer also has a couple starring roles. The concept of collateral beauty is explained, when a character shares her feelings of an overwhelming and profound connection to everything after her own traumatic experience.

After this scene, I looked at my husband and said, “I totally get it.”

Without question, dealing with illness has made me more intensely aware of love, time and death. I remember not long after treatment, feeling so much love for everything and everyone around me. I had so much gratitude for time and deeply understood it’s fragility and temporariness.  I walked the line between life and death and saw how thin the line is.  These feelings were so intense to the point my face would be soaked with tears from a pretty sunset or when my eyes flicked open in the morning. It was then I learned how much beauty can exist in that deemed terrible. I think these feelings and awareness have been a gift and none of that would be possible without cancer.

“No matter how dark and no matter how difficult a time is, there is something beautiful that’s happening right there, you just have to look and see it.” -Will Smith