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.
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.
Elle 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.
Some 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.
As a writer, I am reading all the time. Recently, my entire library waitlist came in at once and I found myself picking up fifteen books – all due back in three weeks. Geez, Louise, I better get busy. 
Stacie Chevrier 