housekeeping: part 1

It has recently come to my attention that my About section may have been a little misleading, so I made it more clear and explained “pancreatic neuroendocrine cancer” a little better. I am now so used to all of the medical speak that I can rattle off a paragraph about my type of cancer without really thinking of how it might sound to people who aren’t as intimately acquainted with the cancer world. And when I say cancer world, I mean neuroendocrine cancer world, because I can’t claim to know much about any other type of cancer besides mine, even though I now have friends who have lots of different types of cancer. And they are all very different.

I didn’t used to know what the pancreas did or where it was, and I most certainly didn’t understand the intricacies of cancers that originate in the pancreas and where they commonly metastasize (grow) to. At the time I was also unaware that pancreatic cancer–the “regular,” more common type, “pancreatic adenocarcinoma”–is known to the general public as being “bad.” Because the name of my cancer starts with pancreatic and ends with cancer, the part in the middle, the “neuroendocrine,” the part that matters, gets lost.

So, the important points, in case you haven’t gotten them already: I don’t have regular pancreatic cancer, my neuroendocrine cancer started in my pancreas and spread to my liver, and now, after surgery, my liver is the only organ that still has tumors. I have a type of cancer that is not likely to kill me anytime soon, but it could. It is “chronic,” which means that I will be living with it for a long time unless the doctors can take it out. Hence: “i am a liver.”

—–

Maybe this is why I’m afraid of telling people. Because i’m tired of saying the word “cancer” and dealing with a freak out. Not all cancers are as dire as the word “cancer” makes them sound. I know a lot of people my age have had extended family members die from cancer. I have had an extended family member die from cancer. Yes–some cancers are bad. But many are quite curable. Mine is not. But that just means I have to live with it.

My cancer normally afflicts men in their 60s–I just recently learned from this overview. This is probably why the doctors have no idea how long I will live. Because their data is on men who are older, and because humans don’t live much older than 100, most men who gets NETs (NeuroEndocrine Tumors)  in their 60s aren’t likely to live for 40 years or more. If I live for 40 years, I will still be young. So there’s no data. The overview says “…the median survival duration from the time of diagnosis for patients with non-functioning metastatic islet cell tumors approaches five years.” But when I read it again I realized that my islet cell tumors are functioning, which makes that sentence void. So, the moral is, don’t believe everyanything you read on the internet. Each cancer in each different person is distinct. Researchers make generalizations based on data, but really, my life expectancy is just as uncertain as your life expectancy. The difference is, I think about it more than I would otherwise because I was dianosed with “cancer.”

This is probably why, way back on October 25 of last year, when my doctors were telling me and my parents what was wrong with me, they neglected to use the word “cancer.” I didn’t even know that this was a type of cancer until I started seeing a therapist that specialized in cancer patients and an oncologist. It didn’t really sound that bad–how could it be cancer?

At the first appointment, all I heard was this really long word that started with an “n” that described my type of tumors. I also heard “slow growing” and “rare.” I was confused about why the pancreas was even involved because the liver was the original problem in the blood work and the early scans. Privately, I was a little skeptical. “I don’t even know what my pancreas is or what it does. How is it possible that it has a grapefruit-sized tumor in it and I don’t know it? Is there even enough room in my small belly for something the size of a grapefruit? Are you sure you’re not looking at someone else’s scans?”

Now, my pancreas and I are intimately acquainted because we spent 10 days in the hospital together getting pricked every 2 hours to check blood sugar levels. We learned about type 1 diabetes, which can sometimes develop when half of a pancreas is removed. In the early days after the surgery, when it was tired of working, I gave it insulin. Now my pancreas is a champ and i’m proud of it. We work together to process the sugars from the food I eat.

When I asked after I learned a little more, the doctors were reluctant to call my NET “cancer.” They called it a “malignancy.” Which sounds perhaps worse to someone who speaks Spanish, because “mal” means “bad.” I remember when I told some of my friends on October 25, they asked if it was cancer, and I didn’t know what to say.

Well now I say: what does it matter? Cancer is just an umbrella term that encompasses a whole group of separate illnesses that describe conditions where people have lots of cells that aren’t supposed to be where they are. Doesn’t it sound like, from the way I can nonchalantly explain it, that I don’t believe these errant cells are the end of my world right now?

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14 Responses to housekeeping: part 1

  1. tjp says:

    This is really awesome, Lindsey. Very helpful!

  2. Jean Farmer says:

    You are one smart cookie! Glad I found your blog, courtesy of your former co-worker at Ragan in Chicago. Keep up with your great positive attitude. I just finished radiation for breast cancer. Cancer makes it a different world, doesn’t it. You are such a creative writer, I hope one day to see that you’re working on a book as well as a blog. Take good care.

  3. Stan says:

    Glad to see you are taking a proactive approach to treatment.
    Sadly,yours is the type of cancer Steve Jobs died of. If he had chosen to follow the treatment regimen prescribed by his doctors, he might still be alive.
    Keep up the great fight!! My mother (just turned 80) is a survivor of two very different cancers (lymphoma and metastatic breast) 10 years apart. We (collectively scientists) are making new discoveries daily in the fight against this disease.

    cheers

    Stan

  4. suki says:

    LIndsey, Lindsey, Libra-Lindsey,
    I didn’t know of *any* of this news until I received a Ragan-wide email about your video going viral. I just wanted to write and tell you that you’re beautiful! Inside and out! And that I absolutely love what you’re doing with your life. xo
    Suki

  5. Nicole says:

    I just say ur video that you made and i wanted to see ur blog and i just wanted to say that u seem like such a strong person. u are truly inspiring!

  6. Glenn says:

    As far as organs go I have always thought that the Pancreas was highly overrated and I am quite pleased to read that you are doing so well with the half that you have left!

    You are an inspiration and a great writer so please keep on writing about your experiences.

    Good luck to you!

  7. Hoon says:

    Your pancreas IS a champ and i’m proud of it, too.

  8. Eric Spence says:

    Cancer Success Story – Bill Trucks

    http://www.cancertruth.net/2011-october-newsletter/

  9. Some random guy from across the Atlantic says:

    There are good news and bad news. The bad news is that silly disease. The good news is that from now on, you’ll have a place in many thoughts, and many prayers.

    Be strong. Take good care of yourself and those you love. :)

  10. Rafael says:

    You are a winner! I read your story in a brazilian site and want to know your blog. Now you have one more friend, just a bit far from you, wicth is praying for you!

  11. Pingback: Inspire A Friend—With Lindsey Miller – DorisBlanchet.com on Living Passionately

  12. Julie Bair says:

    Lindsey,

    I am a 34yo “stage 4″ functional PNET, dx at 30 years old. What type are you? I’m gastrinoma, constantly in search of someone young also dx, there’s not many of us! This Saturday is my 4 yr “cancer-versary” with no progression since primary resection. If you need a friend that can truly understand, email me anytime. It’s tough for us to find someone we can relate to sometimes. Healthy people don’t get it and all I’ve found so far are Noids (so different). Joulie30@gmail.com

    Julie

  13. glenda says:

    Great Blog, keep up the good work. I also have a pNET. I am 49, it was found during an u/s for a uterine fybroid, thankfully before it had spread. So I had “a chunk” of pancreas removed in June, have been insulin dependent since, and still hope that maybe just maybe the rest of my pancreas will work again. Since I was a Type 2 diabetic before surgery I am not sure, but we will see. Keep up the good work! NET Cancer Day is November 10!

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