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.

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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 Bad Month(s)

October and November 2016 need to be voted off the island.  

October 6th marked one year since my liver resection and the day I sent walking papers to some terrible side effects of cancer. Therefore, October 6th should’ve been a day of celebration, but instead, I found myself doubled over in the ER where a CT scan revealed a small bowel obstruction. Apparently, the body doesn’t like open spaces and the absence of a liver in the upper right quadrant of my abdomen caused my small intestine to tangle up in that open space. Is it a little messed up that we were excited it wasn’t cancer related even though I would still need surgery to correct the obstruction? Yes, it is.

A week in the hospital, without any food and an uncomfortable tube up my nose, doctors finally got me on the schedule for surgery. Maybe it was the hunger or the morphine, but the days before and after surgery are blurry. A long 16 days later, I was discharged from the hospital. Home never felt so good.

Days later, my 12-year-old German Shepherd, Bear, could not walk. As if we didn’t have enough cancer in our life, Bear was diagnosed with lymphoma a couple months earlier. We took him to the emergency vet for them to tell us there was nothing more they could do. Not ready to make a quick decision, we took him home with pain meds to see if he would improve. He didn’t and the next day, he was put to sleep. It was heartbreaking.

And then there was the election. It’s no secret, I strongly supported Hillary Clinton. I know we’re all sick of election talk, but let me speak from the perspective of someone who deals with chronic illness.  I am concerned about two programs.  First, the Affordable Care Act (ACA/Obamacare).  I am so fortunate to have excellent health insurance through my husband’s employer. But, the repealing of ACA could mean the reinstatement of policy lifetime maximums, which wouldn’t be an issue for me at the moment, but most definitely would during my lifetime, when you add up the $18,000 injection I receive each month. And while I don’t expect my husband to lose or change jobs anytime soon, the thought of being denying coverage based on pre-existing condition, well, that would be a terrifying scenario. And second, I’m concerned about the Cancer Moonshot initiative. If you’re not familiar, Joe Biden is leading the charge on the use of government funds to make leaps and bounds in cancer research, treatment and cures. Will that funding go away to build some stupid wall or give tax breaks to billionaires? Ok, stepping off the soap box. 

BUT, as usual, I stay positive. I decided a long time ago that I am unbreakable and these hiccups and hurdles are certainly not enough to change that.  The last couple months are yet another reminder of life’s impermanence and that we should be immeasurably grateful for when things are going our way. 

As for writing, I’m back at it and have some upcoming pieces I’m really excited about and will be sharing soon.

As always, thank you for your support, prayers, good vibes and for reading.


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Bear (2004 – 2016)