Monday, August 6, 2012

Starting Over

My friend Mike took me for an epic bowl of seafood pasta at Biggies Clam Bar in NJ 
(My friends are making sure I keep my weight up ... Lost 15 lbs in last 2 months)

Firstly, thank you all so much for the emails and concern. I haven't been updating my blog because it seemed as if there was just too much to say...

I was in the hospital 5 times in July - four ER trips and one scheduled surgery. After the last blog, Rob (aka Batman) and I ended up going down to Robert Wood Johnson ER - and there we at least got a few answers.

As I was having a pain spike - the medical resident recognized it immediately:

"Have you ever had a charlie-horse?" The young doctor asked. (um ... I played competitive soccer so yea)

"Sure" I replied.

"Well you're having intestinal spasms - it's like a charlie-horse in your intestines" he explained.

While he was able to identify the issue he had no idea as to its cause.

He put me on Bentyl and Valium and the pain is under control. I saw a GI specialist who ordered more tests, and I see a top Internist tomorrow to try to figure out all the non-carcinoid related symptoms I've been having (pain, bruising, exhaustion, weight loss, weakness, low grade fevers, muscle spasms - I even developed thrush a couple weeks ago).

On top of all of this Gary - my partner of 5 years - and I separated, and I moved into my own studio in June. So I find myself back at the start - in all aspects if life.

I feel like an unwelcome visitor in my own body, and my new place doesn't feel like home yet - despite the heroic efforts of my amazing friends, and countless trips to IKEA.

On a positive note, my surgery (uterine polypectomy) went very well, and we are confident the biopsy will come back just fine. It's the mystery of why I'm still so sick that's the lurking ghost.

They estimate that I had Carcinoid Cancer for 5-6 years - the last year is when it broke through the appendix and was "accidentally" found during another surgery - and initially diagnosed as recurring appendicitis. I love looking at the MRI and CT reports that were done 2 weeks before they found the 3 cm tumor. Both reports say "appendix appears unremarkable". Luckily for me, my surgeon thought differently.

As Dr. Kulke (Carcinoid expert) told us - the "good news" is if my cancer has metastasized in my blood - which can't ever be ruled out - "it will eventually present itself" ie there will be more tumors.

But now there's a new unknown. How many years before this medical mystery is solved?

Carcinoid is rare, and nobody - not even doctors, really understand its true nature... But at least I had a name for what I thought was shutting my body down. Now, there's just more unanswered questions. I'm hoping tomorrow's doctor visit will bring us closer to some answers. I just need to keep moving forward.

- Posted using BlogPress from my iPhone


  1. I had a 2 cm carcinoid removed from my small intestine in May. For ten weeks prior, I had severe abdominal pain...spasms then loud gurgles. All the doctors said it was caused by adhesions from previous surgery done last year. I lost 30 pounds in that time period. A colorectal surgeon did find an adhesion but lurking under it was the tumor. That was a surprise to her even though she has seen them before. It did metastsize to two nodes but all was taken out. My oscan was clear so it is just a wait and see now. I am hoping you get relief soon. I feel great now but I still feel like I am walking on eggs.

  2. Dear Marlena,
    Thank you for posting this update.
    I am truly sorry to hear about you and Gary.
    Moving forward is the only way to go :)
    Seek answers (about your health) with passion and perseverance.
    Thinking of you.

  3. Carol and Annie ... Thanks for your comments - I don't feel alone on this unknown land with your support