Post Post Surgery

Most of you followed my progress on Facebook so I wasn’t in a hurry to update. Plus, most nights I’m in bed by 9pm. So, here’s a little recap and a “Where is she now?” for your reading pleasure. Surgery went great. They removed my appendix, gallbladder, sections of my small and large intestine (this is where they found my primary located), some lymph nodes, and 25 tumors from my liver ranging from the size of a softball to a pea. There were some tumors they could not take out so they applied chemo directly to my liver. Cool fact, they froze all of my tumors to use in research studies in the future. To think, Bubba could find the cure to NETS.  

ICU was hardcore. I peed green for 2 days and got to give myself pain meds by pushing a button connected to my central line. Speaking of IV’s; when I came out of surgery I had 4. One was even stitched into my neck; called a central line. I do not recommend benedryl through IV. Fablah. The thing in my nose is not oxygen, it’s a CO2 monitor to make sure I didn’t OD on pain meds. Dumb thing beeped like crazy if you took it out. My incision was glued together which was neat. And I repeatedly asked for root beer floats whenever a doctor came by. No luck tho. Did con a nurse into apple juice. It was heavenly.  

  The week in the hospital had its good days and bad just like everything else in this world. I LOVED all of my nurses (except the ones on thanksgiving; we aren’t going to talk about that day tho) My nurses: Kia, Jamie, Rosa, Mike, Amanda….all fantastic. The floor I was on is the only floor carcinoid cancer patients stay on and all of the nurses are trained in carcinoid care. 

When I was released I stayed at the Hope Lodge a few days. American Cancer Society is pretty badass for having these lodges by the way. 

Once I made it back home I had a rough go at things. Lot of pain, lack of appetite, emotional strain from being useless, fever, chest pain, fatigue and hives. You would have thought I was 85. Ended up in the ER a few times from hives. Funny thing; they had to do a chest x-ray in ER and dr comes back and goes “your liver looks like it’s been through a war zone.” 

I am still recovering. I can finally lift over 10pounds and the outside of my scar is healed. Still having issues figuring out what I can and can’t eat and I get tired really easy. But, I feel good. Finally over 100 pounds which is awesome and I can put Elijah in a shopping cart. And no more hives! I have tumor marking blood work on Jan 14th and a crap load of scans on Feb 15th which I’m not looking forward too. After that we will know where things stand. I have to go back to New Orleans at the end of Feb for a follow up. 

As I have said from day 1; out of my hands and in God’s.  


15 thoughts on “Post Post Surgery

    1. Just found your site. My husband was diagnosed April 2010. PNET is rare and it’s interesting to see the varying approaches the medical community has to managing it. I’ll be curious to hear if you think the debulking surgery helped with pain and side effects.

      Robert, like you and your followers, have been through so much since diagnosis. Has his good days and bad.

      Take Gentle Care.

      Liked by 2 people

      1. The verdict is still out regarding the surgery. I’m giving myself till the end of February to form a complete decision on it and I’ll make a post about it. So far I have really mixed feelings. Wishing the best for you and your hubby


  1. it’s me again! I’m going to schedule your post this weekend. I love the fact that you have recorded the range of treatments you had as you were having them and in easy to understand detail (in hindsight I wish I had recorded mine including pictures).

    This is great source of knowledge and hope for people who are about to have these treatments – moreover because you have a great attitude which is what I like to base my site on. I also wanted to emphasise that young people also succumb to this disease, not just the 50/60 somethings you normally see. I searched but wasn’t unable to work out your first name so not sure how to introduce you!

    Liked by 1 person

  2. Hi Amanda, just found your blog through the very lovely Ronny… funny I have a scar not dissimilar to yours… however they went around my belly button! I am new to the Nets scene, although the doctors tell me that Nets is not new to me. I had a mass growing out of where my appendix was and spent 11 scary days in hospital in November removing the mass… cutting out some of my bowel and lymph nodes and rejoining it. I have had my first injection of Octreotide 2 weeks ago… and feel great…so far. Apparently I have secondaries in my liver and a spot on my rib…

    When I came out of hospital I felt so alone… but I now realise and its been through Ronny, that there is a very wide community of Nets sufferers… all over the world and Im not so alone any more. I just wanted to say that I think you’re awesome. You go girl!

    Liked by 1 person

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