Sunday, February 1, 2015

Carcinoid Syndrome Flushing

Not very pretty: melted mascara; mangled brows; sour-puss expression; no foundation, cover-up, or blush of any kind. But carcinoid syndrome ain't pretty. This is tell-tale flushing, that happened while just relaxing on the couch. My other symptoms are on high alert too... it's important to be straight, tell it like it is. No one likes an ugly picture of them blasted on social media, but I made a commitment to be honest about my journey.
Carcinoid Syndrome Symptoms
Flushing feels hot and uncomfortable - like an internal, tingly sunburn. It starts on my cheeks by the bridge of my nose and spreads across my face and chest in a matter of minutes. For me, it usually happens in times of stress or when eating too much sugar. Lately, however, it happens for no reason at all. (I don't drink alcohol, but many have a reaction to that as well.) It is not menopause - got tested for that. Nor is it Lupus, got tested for that too. So it's not rocket science to put carcinoid cancer and carcinoid flushing together.

In the past, doctors have remarked how "good" I look... maybe now, with photographic evidence of clear flushing - everyone can get on the same page medically. Advice for zebras: gather as much evidence of fleeting symptoms as possible - you may just look too fabulous for doctors to consider you ill!

I've taken some time off from doctors these past 2 years. Other than regular Sloan Kettering appointments - I've avoided all follow up doctor visits with specialists. Sometimes you feel even more sick staring at yet another set of plastic chairs and fanned magazines on a faded coffee table, waiting to be called - only for the doctor to shrug and order more needles, more tests. But now it's time to get back on track.

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

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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.

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