Zebras
Have you ever heard the phrase, " If you hear hoof-beats, think horses, not Zebras"? Today I attended my very first cancer support group. I have been periodically looking for a support group for pancreatic cancer and not finding one (because true pancreatic cancer patients often die within the year). I recently clicked on a link in one of my searches and found myself on a page talking about all the different NETs (Neuroendocrine tumours). There I discovered that I don't really have pancreatic cancer. I have PNETs. So really a pancreatic cancer support group would not help me much at all.
So, why the Zebra intro? NETs are Zebras. They are almost always misdiagnosed and, in most cases take months or years for doctors to figure out that their patient does not have: IBS, stomach ulcers, appendicitis, gall bladder issues, etc. Of course doctors will always go to the more common illnesses when you present with similar symptoms. That only makes sense! That is why it is so hard to diagnose. I heard so many stories today that sounded very familiar. The support group I attended was for all different kinds of Carcinoid NETs. I was so pleased to hear that I am not the only person I knew who had the weirdest side effects from cancer. They all have the same symptoms as me. We talked about various kinds of treatments available, their side effects and what they can and cannot do.
One drug that I tried back in June, did not seem to work for me. Another woman in the group takes it at triple the dose and it works for her. The drug I am taking right now that does work for me didn't work for others (because it is like drinking sand!).
I am very encouraged today. I heard from people who have the same doctor as me and love him as much as I do. I heard from people who were told to get their life in order and to get ready to die, who are still here 10 years later because they didn't give up and found a doctor who was willing to give them hope.
Today, I have hope. I have support (I always have, but its nice to have support from people who have been there!) I hope to blog a little more regularly now that I am no longer NED (no evidence of disease) . I hope and pray if you read this, that you, also are encouraged in whatever you struggle with!
So, why the Zebra intro? NETs are Zebras. They are almost always misdiagnosed and, in most cases take months or years for doctors to figure out that their patient does not have: IBS, stomach ulcers, appendicitis, gall bladder issues, etc. Of course doctors will always go to the more common illnesses when you present with similar symptoms. That only makes sense! That is why it is so hard to diagnose. I heard so many stories today that sounded very familiar. The support group I attended was for all different kinds of Carcinoid NETs. I was so pleased to hear that I am not the only person I knew who had the weirdest side effects from cancer. They all have the same symptoms as me. We talked about various kinds of treatments available, their side effects and what they can and cannot do.
One drug that I tried back in June, did not seem to work for me. Another woman in the group takes it at triple the dose and it works for her. The drug I am taking right now that does work for me didn't work for others (because it is like drinking sand!).
I am very encouraged today. I heard from people who have the same doctor as me and love him as much as I do. I heard from people who were told to get their life in order and to get ready to die, who are still here 10 years later because they didn't give up and found a doctor who was willing to give them hope.
Today, I have hope. I have support (I always have, but its nice to have support from people who have been there!) I hope to blog a little more regularly now that I am no longer NED (no evidence of disease) . I hope and pray if you read this, that you, also are encouraged in whatever you struggle with!
So I reflected on all this and concluded that the righteous and the wise and what they do are in God’s hands, but no one knows whether love or hate awaits them. Ecclesiastes 9:1https://cnetscanada.org/about-us/why-a-zebra/
Knowing that your faith is strong and that your family and friends are ready, willing, and present to offer support creates for you the very best condition to appreciate every minute of life's journey - you are so blessed, Marie, to have and know the love of God, your family, and friends near and far. We appreciate that you are among us showing us what it means to love God and all of us right back. Heartfelt hugs and laughter sent with more love than I can express. Thanks for being your beautiful self. You make my world more beautiful.
ReplyDeleteThank you for this! You just made my day 💜
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