Thursday, January 1, 2015

Page One

Christmas is about a new baby - new life being born into the world for salvation and hope. New Years is a chance to be reborn into our best selves...a time to start over.

We all have big ideas on day one. Mine is rather simple: be as true to the title of this blog as possible.

I have always been fiercely independent to a fault. After all, I moved to both Mexico and Bali  - knowing no one, and having only a minimum understanding of the language and culture. But in both foreign lands, I managed to rent an apartment, work, and make great friends. I embraced the challenge of navigating new environments... in a way I think these experiences helped me handle living in the crazy world of Orphan diseases.

But when my body turned against me - first with Carcinoid cancer and then a mysterious autoimmune disease -  I had to come to terms with the fact that I couldn't make it on my own anymore; I needed significant help completing even the most mundane tasks. It was tough giving up my prided independence, but I'm grateful and lucky that my friends and family were right by my side every step of the way.

Now that my symptoms are managed, it's hard to justify making time for myself when I have so many other responsibilities at school and home. For example, something as routine as getting my hair cut and colored went undone for six months, and my day-to-day boots were so worn out that they had holes in them. For me, it was easier to pluck out gray hairs and wear thick socks rather than make time to take care of these simple tasks.

Before my diagnosis, I had made a New Year's resolution to be more glamorous - like Jackie-O. Instead of making a new resolution, I'm reviving my old one. I will be kind to myself. I resolve not to see taking care of myself as a selfish act, but rather as an act of self-love that I deserve.

Tuesday, December 2, 2014

Grammar Lesson #23

Linking Verbs

- Posted using BlogPress from my iPhone

Monday, November 10, 2014


The theme for this year’s NET Cancer Awareness Day (Nov 10, 2014) campaign is “Time to Diagnosis,” focusing on one of the most common issues with carcinoid and other types of neuroendocrine cancers: misdiagnosis.

The International Neuroendocrine Cancer Alliance (INCA) and Carcinoid Cancer Foundation put out a call for NET patients and survivors to send in photo selfies with a downloadable placard that shows how many years it took to be diagnosed, the misdiagnosis, and actual diagnosis.

For me, it took over 5 years and countless failed CT, ultrasound and MRI scans that finally lead to a surgery for a suspicious complex ovarian cyst (read ovarian cancer possibility). It was during that surgery that my carcinoid tumor - that had perforated my appendix wall - was accidentally discovered and again misdiagnosed as recurring appendicitis until the biopsy came back.

After my carcinoid diagnosis, I went through my old radiology notes. Unbelievably, the three most recent scans unanimously, and erroneously, declared "appendix unremarkable." Granted they were looking for ovarian cancer - but what is truly "remarkable" is they missed a 3 cm tumor over and over again.

Had they found the tumor early, I would have had a simple appendectomy and been 99% cured. Instead, I was gutted like a fish (although scoped masterfully by my hero Dr Nash at Sloan Kettering) and lost 1/2 my colon and 20 lymph nodes with a subsequent infection, open wound care, and ongoing health issues.

It's still a struggle. I have a chronic condition that includes flushing, bone crushing pain, muscle weakness and a myriad of other not so nice things. Some symptoms are self-reporting and others are independently observable or in the labs.

The jury is still out - and arguing the old chicken and egg riddle ... Is my chronic health condition caused by carcinoid syndrome or was the carcinoid a by-product of some overarching mystery disease. I stopped spending my time trying to solve the "which came first" riddle and have instead learned to focus on trying to naturally manage my day to day symptoms and staying positive.

The carcinoid slogan is true "if you don't suspect it you can't detect it." Listen to your body - if you know something is wrong with your health but no one can figure it out ... encourage your doctors to look for the unusual - zebras instead of horses when they hear hoofbeats.

- Posted using BlogPress from my iPhone

Tuesday, October 7, 2014

Shoot For the Moon... Get 14 Blogs

So I really wanted to get back to writing, and thought the "30 Days of Summer" project would be a good motivator. However, as any Mr. Softee truck driver, school kid, or teacher will tell you, the summer is always too short. And here we are, at the start of a new school year with a whole new set of adventures and tomfoolery to write about. The remaining 16 missing blogs of the "30 Days of Summer" project will have to slide through the cracks of autumn, and come in drips and drabs as the year rolls on.

Until then, I'll leave you with a recent conversation with one of my seniors:

Me: You were supposed to find the four noble truths that correspond to the first four chapters in Siddhartha... why didn't you do your homework?

Student: I did. (shows me the sentence from chapter 1 that I used as an example in the previous class lesson)

Me: I already gave you guys that one yesterday... what about the other three?

Student: Well I wasn't paying attention in class yesterday, so I should get credit for at least this one since I found it on my own.

Let the games begin

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