I started drafting thoughts for this post a couple weeks ago. This is one of the harder topics for me to put into words.

I feel like I’ve always had an angry side, a quick temper – it can flare up quickly & comes out sideways sometimes. My husband jokes about my potty mouth. And maybe the ONLY benefit to having a mask on during workouts – no one can decipher my workout words.

I am incredibly angry I have to deal with this crap! I feel totally overwhelmed most of the time. And I’m sure this stress is not doing my body any good but I really don’t have another option.

I found resources to learn more about NETs (neuroendocrine tumors) and have joined a couple online support groups with fellow NETs people. The process of understanding this cancer is going to be LONG and confusing.

The more I read the angrier I get. I already have multiple trips to the cancer center & multiple providers to keep records of appointments & treatments. Now I need to find a NETs specialist – none in DE so this is travel, this is more things to squeeze into a schedule.

The more I read the angrier I get. NETs present differently for everyone depending on the number of tumors, location, stage, grade, Ki-67 number… I can’t even use others’ experiences to guesstimate my future. I will need to get a medical degree to understand what I have and a really need an administrative assistant to keep track of when I go where for what.

The more I read the angrier I get. The symptoms of the tumor activity, the side effects of the treatments – all scary. I’m not experiencing them yet, to my knowledge. This will affect me though and I need to be aware of what they are. For example, I now have to worry about carcinoid syndrome & how normal things like dental procedures involving novocaine could trigger it. The sooner I catch a problem the more likely it will be to treat it, so I can’t not know what’s coming.

The more I read the angrier I get. Most of those with NETs are mis-diagnosed and don’t find out for a few years after being incorrectly treated for other things. I have no way to know but my suspicion is the non-ulcer dyspepsia (IBS like issues) I was diagnosed with several years ago probably was this starting up. NETs is unknown enough so most docs don’t even know to consider it.

The more I read the angrier I get. I’ve been told to not read and just wait for doctors to explain things. I don’t see this as an option. I need to know what questions to ask, when to ask, who to ask. But this leaves all the learning up to me.