Chapter 2: The Sh*t, 3/10/17

Chapter 2: The Sh*t, 3/10/17

Neuroendocrine cancer is an uncommon cancer, and is also known as “slow motion cancer.” It grows slowly over many years and usually does not show any/many symptoms until it is more advanced. We don’t know how long this has been secretly creeping around Don’s sexy bod, but it has probably been 3-5 years. In his case, the neuroendocrine tumor started in his small intestine (we think) and spread to his liver. Right now there are a few tumors on his liver. He seems too young to have to deal with this, but we are learning that this disease has survivors of all ages, including children.

What does “uncommon cancer” mean?
In this case, it means this type of cancer doesn’t happen very often; there are fewer cases of NETs diagnosed each year, compared to breast cancer or lung cancer, etc. They DO know how to treat it, but each case is unique to the patient, so treatment approaches are adjusted to the patient’s circumstance. There are ongoing advances in diagnostics and treatment everyday for this disease, which gives us lots of hope.

Cancer Type

# annual US cases

# annual cases seen at Cone, Gboro

Breast Cancer

about 250,000

about 500

Lung Cancer

about 220,000

about 500

Colorectal Cancer

about 135,000

about 500

Pancreatic Cancer

about 53,00

not sure

Neuroendocrine/carcinoid Cancer

5,000 to 10,000

20 to 30 (yes, less than 50 cases/year are seen here in Gboro)

If you want to learn more, you can watch this short segment of The Balancing Act, a show on the Lifetime Channel. Can you believe it just aired a couple of weeks ago? The segment is about 6 minutes long. This topic starts at 9:29, it’s the middle segment of the 20 minutes long show.
You can also check out the Carcinoid Cancer Foundation. If you don’t want to learn more, I don’t blame you, so no pressure. I will probably be sharing some here in the blog, so you can learn along with us.

If you can believe it, the Neuroendocrine Cancer Patient Conference is coming up in Charlotte later this month, so we are going. I’m sure our heads will be spinning after the first hour, but we believe that knowledge is power, and are learning that being proactive about understanding and managing this disease is critical.

I guess I should mention that my BA in biology is finally coming in handy! (Whatd’ya know?!) While I’m certainly no medical professional, as I learn about this disease, I’m slowly navigating some of the terminology and not afraid to look it up to learn more. New vocabulary words include: low/high-grade, mitotic rate, Ki-67 index, immunolabels, differentiation, to name a few. Flashbacks of BIO 205 – Cellular & Developmental Biology, from my days in Chapel Hill are becoming common. I don’t remember my professor’s name, but I can see his face, his white hair and remember his enthusiasm in my mind. And it’s only been 25 years!

So where are we on the roller coaster?
Right now, it’s an uphill climb. We will be seeing a local oncologist soon. And hopefully also get connected to a specialist at Duke. Fingers crossed. Most likely, the oncologist will say (a) let’s do surgery to remove the tumors or (b) let’s start treatment to reduce tumor size, so that then we can do surgery. TBD.
How is Don feeling? 
Physically, he feels good. He is working and camping and doing his normal stuff. (Not to mention ripping out our old counter tops for the gorgeous new quartz counters – YEA!) There a few symptoms to this disease: diarrhea, fatigue and flushing. Flushing is kind of like a hot flash without the sweating — face, neck and torso get really hot and uncomfortable; usually after eating. So far flushing is the only symptom Don has occasionally experienced. I take this as a good sign. Many NETs patients end up managing their disease over their lifetime. That could be a bummer but beats the alternative. Emotionally, he is also doing well. This has been a shock, as you can imagine, but he is strong and brave and is expecting the best outcome.
What can you do? 
Add us to your prayer list, to your church’s prayer list, do a Healthy MoJo Dance, light a candle, make us laugh. Any of that would be awesome. If more practical needs come up, I will let you know. Right now I’m just trying to remember what day it is.
What does Anne Lamott say about these things?
Anne Lamott is one of my go-to’s when the going gets tough. If you don’t know her, let me introduce you… “When you make friends with fear, it can’t rule you.” This is great advice and applies throughout life. Not only in the big stuff (disease, death, the hard sh*t) but in the everyday stuff, too. Are you afraid of a problematic situation at work? Afraid of a relationship ending? Afraid of not being able to provide? Afraid of not having the strength to face a tough family situation? Afraid you can’t overcome an addiction? Let’s make friends with fear. I like to say “eyes wide open” … look the scary stuff in the eye and decide to face it head-on. You’ll be amazed at how strong and prepared you really are.
Thanks for your support, friends. I’ll keep you posted.
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