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.