Top Ten Takeaways from the National NET Patient Conference

Last week, Anne and I attended the National NET Patient Conference in New Orleans, presented by NCAN (the Neuroendocrine Cancer Awareness Network). It was an amazing experience. Here, in no particular order, are our top ten takeaways:

1.) We’re not alone.

Before the conference, we had met only one person with neuroendocrine tumors, back when Anne had her Gallium scan in Pretoria. I can’t put into words how much it meant to talk with people, laugh with people, cry with people who not only know what NETs are (which already puts them ahead of 99% of the population), but who know intimately what it means to live with this disease. It’s not a club that anyone asks to join, but it’s an amazing community full of passionate people who are willing to fight for each other and lift each other up.

Continue reading “Top Ten Takeaways from the National NET Patient Conference”

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Back and forth and home again

I’m home again!

The consensus from the team was that while we know SOMETHING is wrong, I didn’t need to be trapped in the hospital (woo hoo!) and could be freed to return to these bouncy babies.

There’s a lot going on, symptom-wise and a lot of possible answers. There could be one or two explanations that cover everything, or a half-dozen things colliding at once. We need more time and more tests to rule things out and count things in. So, are next few weeks look like this:

Sunday September 18: Coleman preaches at the Bryn Athyn Cathedral (9:30 and 11)

Monday September 19: AM Lab work, PM Visit to the immigration doctor for Green Card paperwork

Tuesday September 20: Primary Care Doctor

Wednesday September 21: Fly to New Orleans for the 2016 NCAN NET Patient Conference! Two and a half days of talks and panels with over 20 world-leading experts on NETs and 400+ patients to meet and talk with! (Conference is Thurs-Sat, with an extra meeting on Sunday).

Monday September 26: Fly home from New Orleans

Wednesday September 28: Cardiologist

Thursday September 29: Follow-up with Surgical Oncologist, Follow-up with Resident Gynaecologist

Thursday October 6: Hematology

Monday October 10: New patient visit with Onco-fertility specialist OB/GYN. Since I am still of child-bearing age and the next most likely place of spread for my cancer is my ovaries, we are being referred to a reproductive endocrinologist who is also an OB/GYN specializing in the care of women with cancer.

Last minute appointment of unknown timing: Dr Metz, head of the NET team at Penn, to discuss next steps and treatment options for my care. We’ll get a call a day or two ahead of time asking us to come in when he has an opening.

We are so grateful to have all of these experts (all except my primary care doctor are at Penn) working together to monitor, treat and care for me. We have been extremely impressed by the communication between the different doctors and departments and are confident that we are receiving excellent care.

Right now we are learning to take it one day at a time as my symptoms and energy level vary quite a bit. It is good to be home, where I can rest, but I can also get dressed, go outside and join my children in a bouncy castle.

Puzzle Pieces

If you follow us on Facebook, you may have heard that I was readmitted to hospital again on Sunday, September 11.

There were a number of things that came together that led to my re-admission. I’ve had some concerning symptoms: bleeding, dizziness, pain and nausea. I’m also experiencing some heart concerns – low blood pressure, tachycardia, palpitations, and arrhythmia, and I’ve fallen a couple of times. I have a number of swollen lymph nodes throughout my body, and some unexplained gas bubbles in my abdomen, near the site of my anastomosis.

These are a diverse range of symptoms, with a few different possible causes and a number of teams are involved with treating me. I’ll give a brief update as to where we are at based on each team.

Continue reading “Puzzle Pieces”