Category: Cancer

Nerding Out on NETs in NYC

5 Comments
img_3647

Me with the Godfather

My six month check-up with my Neuroendocrine Tumor (NET) specialist, Dr. Wolin, in New York City happened to coincide with Big Apple NETs support group Luncheon with the Experts.

As always, it was wonderful to connect with other NET survivors and hear their stories. However, being able to ask questions of some of our communities champions, was pretty incredible. The most notable of the panelists was Dr. Richard Warner, who I’m calling the Godfather of NETs. He was accompanied by two knowledgeable colleagues, Dr. Lynn Ratnor and Dr. Jerome Zacks. During lunch patients were allowed to ask general questions regarding treatments, surgery and lifestyle. Some of the major topics included:

Familial links – This was an especially timely topic for me as I just had an email conversation with a NET survivor, whose sibling also had a NET. Everything I’ve ever read indicates it is not a hereditary disease and Dr. Warner’s opinion is that there are links. He thinks this will be a hot topic in coming years as the incident rates rise for NETs. Then this week, the Healing NET released some information on a clinical trial looking for enrollees on this topic.

Diet and Alternative Treatments – The general consensus of the panelists was that these methods should not be used alone, but in conjunction with treatments. And that patients should be cautious to not negatively impact any proven treatments. Dr. Warner did share some of his opinions regarding foods (and other things) that impact carcinoid syndrome:

  • Nasal spray
  • Dental shots with epinephrine
  • Alcohol (Specifically port wine was mentioned)
  • Fermented foods such as ripe cheeses, herring, etc.

Note: I’m sure this list should be longer, but these are the items he mentioned.

There was also discussion about products such as CBD oil, alkaline water, plant based diets and excluding sugar. Being the scientists that they are, they would not stand behind anything that hasn’t been studied and proven.

Gallium-68 – There was some discussion and explaination about this newly approved scan and it’s ability to detect small tumors often undetectable by CTs and MRIs. The Carcinoid Cancer Foundation has put together a nice page of information and locations where this is available.

Xermelo – A newly approved drug to be used in conjunction with Lanreotide or Sandostatin for uncontrolled carcinoid syndrome. Read the FDA approval here.

It was a really nice few hours and I did learn some new things.

Then Monday, I had my very first Gallium-68 scan at Albert Einstein-Montefiore Cancer Center and wanted to chronicle the process for others.

Setting up the scan wasn’t too complicated. The most unnerving part was when I was told I’d have to pay upfront for the test and they would reimburse when/if my insurance covered the scan. Fortunately, my insurance came through at the last minute and I did not have to cough up $3,400. Can we all just pause for a moment and say, Thank You to the Insurance Gods.

I received several calls ahead of time cautioning me this is an extreme fast for four hours. Normally, I fast for six, so four is a walk in the park. After my Uber dropped me off at the wrong address, in the Bronx, in the rain, I eventually figured it out and made it just in time to my appointment.

I was called back right away for them to start an IV, which is always a fun process for me since I’m hard stick. Normally, the average number of sticks is four and they did it in three, so that’s pretty good.

img_3657

Just a little metal tube of radiation, NBD. 

As soon as I was hooked up, two gloved doctors appeared with a thick metal tube full of radioactive liquid they injected into my veins. It wasn’t long, but it felt like fire going through my veins. They told me that’s unusual, which is becoming the story of my life. I was cautioned sometimes people can become nauseated after the injection. Fortunately, that did not happen to me.

After they emptied the tube, everyone quickly left the room and I relaxed and read as radioactivity flowed through my veins.

An hour later, someone showed up to escort me into the scan room.

As far as the actual scan, it was a piece of cake, compared to an MRI. There was plenty of room between my body and the machine.  The hardest part was lying still with my arms above my head for 45 minutes. I had them shut the lights off so I could take a little nap.

Then it was over and I was instructed to drink a lot of water to flush my system. I was pretty wiped out the rest of the day, which I’m not sure was due to the scan, the rain, the coldness, the lack of sleep, the excessive amount of walking NYC demands and/or the emotional/mental drain. Probably all those things, so we ordered in and finally emerged Tuesday and Wednesday evening for a bit of fun in the city.

If you’re interested in learning more about Gallium-68 scans, I recommend the Carcinoid Cancer Foundation website.

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

2 Comments

 

“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

8 Comments

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.