OKay, so it’s probably time that I update everyone on my actual condition. Just like most people I know, we’ve certainly had a busy year. And with trying to find a new look and format for my website, the updates just have been too slow to come. But alas – we are finally there and I can now easily and more frequently update my posts. I’m hoping to not only keep you up to date on how I’m doing, but share insights and thoughts related to the Carcinoid community, or even just life in general. I’ve learned by now that I’m not the only one out here with Carcinoid and there are so many wonderful examples of strength and courage in the cancer community in general.
If you’re looking for even more frequent ramblings from my life, feel free to follow me on twitter @CarcinoidStory
Oh my god, did I just say “…on Twitter”? I remember just 6 short years ago (when I was diagnosed) how hard it was to find anything on the internet that was reliable (besides a few excellent sources listed here). But it was just so hard to even find anyone with my disease. Now, especially if you’re reading this, you’re probably somehow personally affected by this disease and we know we are not alone. Thankfully, in the 6 years that I’ve been playing this game called “Beating Cancer”, the online community has grown and support systems have been formed. Thank goodness. Hopefully we can all learn from each other and all win in the end.
So here’s my update. You’ll have to excuse me if I only hit on the major points. It’s now been nearly 11 months since my liver surgery and, as you can imagine, a lot of things can happen in that time. I would like to tell you that everything has gone completely according to plan; I healed and recovered without any issues or concerns; and that everything came up roses by summertime. But that just wouldn’t be true. And by highlighting some of the challenges I’ve faced after such a major surgery, I hope others might find comfort if they too, at this time, are struggling with their own recovery or health issues.
1) The Good: At this time, my CgA and 5HIAA are still near normal levels, just slightly outside of the range of a “healthy” person. Previously, these numbers were off the charts and a serious indication as to how bad my disease was. But now, with 90% of my tumors having been removed during the surgery, my bloodmarkers are excellent and the symptoms related to Carcinoid (flushing, specifically for me) have been minimal. (Minimal = 3 or 4 times in the last 11 months. Would previously flush at least 3 or 4 times PER day!).
2) The Bad: Strange but true – although none of my liver was resected during the surgery, enough mass was removed that there was some liver regeneration. It has grown back in a “weird” sort of way. Also, Dr Beudreaux (surgeon) during my surgery inserted “chemo-gel” packs into the crevasses that were created where the tumors were removed. The affects of this chemo on my liver has positive implications, as it’s meant to kill any microscopic cancer cells that still may have remained in those areas. However, it has caused some serious confusion in how it looks on MRI scans (i.e. – what looks like a tumor, is actually the affects of the chemo-gel pack still showing up). This is something that we are actively working on figuring out. Never mind the challenges I already face with trying to coordinate care between my local team in Chicago and the team at LSU/Dr. Woltering’s team.
3) The Ugly: As stated above, my insides are just “weird”. The liver has shifted, the stomach is now pressed, and my inferior vena cava is being squished because of this. Throughout the months, I’ve had sporadic episodes of ascites (fluid build up in the abdomen) and the current running theory is that this is because of the constriction of blood flow and fluid through that aforementioned vena cava. During my “best’ ascites episodes, I looked several months pregnant (something I’ve never actually been) and had to field such terrific questions as “When are you due?” I’ve had a paracenthesis (draining of the fluid) procedure performed three times. In September, I started on diuretics to help prevent fluid build up – which has worked. We may decide to put a stint in the vena cava, but won’t make that determination until after my next round of scans (MRI scheduled for Dec 19).
I could do a whole post on the crazy body issues I now have – as if women don’t already have body issues 🙂 But for this reason, 2012 will now always be “The year I was pregnant, but never gave birth”.
It wouldn’t be fair though to think of it as all bad. The surgery was certainly a huge success for me, and 11 months later I know I made a good decision to do such an aggresive and radical treatment. I feel better now than ever. I was able to travel to Gatlinburg, Tennessee with my husband and host a reunion for my cousins in June. We had our 13 year old neice visit us in Chicago in September. It’s been a fun, fantastic year. I couldn’t be more grateful for all the blessings that surround me.
When I started my first website, I often liked to post some of my favorite quotes (or something befitting of the post). I want to continue that here, in closing:
“Count your blessings. Once you realize how valuable you are and how much you have going for you, the smiles will return, the sun will break out, the music will play, and you will finally be able to move forward the life that God intended for you with grace, strength, courage and confidence.” — Og Mandino