Wednesday, October 29, 2014

I have a little confession to make...

A little background:  I used to hang out here, and moreover, POST here - A LOT!  Over time, things sort of waxed and waned, and I'd post from time to time, but nothing like the first few years.
Every time I thought I'd have more time to focus on being here and sharing ideas, something would come up.  We moved.  Work suddenly got incredibly busy.  Then both of my parents were ill at the same time and passed away within 3 months of each other.  Then we moved again and had a number of estate things to work on and get settled.  Then we worked on the house a bit.  FINALLY - finally things began to settle down once and for all after the first of the year. "Great!", I thought, "Now I'll have time to get back to my blog and catch up!" And then...
Then spring rolled around and I finally had to admit to myself that I wasn't feeling great - I was definitely having some health issues.  It didn't seem to be anything serious, really - just a lot of little symptoms that had been bugging me for quite a while.  Then a few new symptoms began popping up and I knew it was time to go to the doctor.  It was May and I had a physical scheduled for the middle of June, but my Kevin insisted that we not wait, so I made an appointment for a few days later.  I'd been doing some research to try and correlate the symptoms and what I was finding ... well, it wasn't great news.
At first the doctor thought we were kind of crazy and a bit over anxious, but she finally relented and did a number of tests.  I won't bore you with names of all the tests, but trust me - there were quite a few. Some of the results came in quickly, while others took a bit longer, the the result was the same. The bottom line is:  I have cancer.
Kind of shocking, I know.  I have carcinoid cancer and have apparently had it for about 10 years - without even knowing.  For those of you not familiar with this type of cancer - which frankly, is probably most people since it's quite rare - it is a slow-growing, non-aggressive cancer.  The primary site is typically found in the 'gut' area, at least that's where it begins. In my case, they haven't found the primary site, which my oncologist said doesn't matter.  Once it spreads, it doesn't really matter where it started.  In my case, when we found it in May, it had spread to my liver and is considered Stage IV. Which, though frightening, isn't quite the same as when you have a Stage IV breast cancer or other cancers.  Basically what it means for me is that, by the time they found it, it had already traveled to the liver - which makes it Stage IV.  The doctor said that people can - and do - live with this type of cancer for years.  Obviously, that's what we're hoping for!  And honestly, it's a very good probability.  With the exception of the two cancer markers used to diagnose this cancer, all of my lab work is good.  If you were to see me, I clearly don't appear to be ill.  In fact, I feel great!  
The bad: This type of cancer does not work well with either chemo or radiation. There are other treatments available to me when I need them, but they are not the standard types of either of these treatments.  Additionally, this particular cancer causes right-sided heart damage - which I have.  The two valves on the right side of my heart both leak.  A lot.  I was having really bad edema which was exacerbating my symptoms. They referred me to a cardiologist who, initially suggested open heart surgery.  But after we talked and looked at options, we decided to try medication first.  I've been on it for a month, and it's working like a charm.  So.  No surgery at this time.
The good: I am on a medication that I inject twice a day.  It has alleviated all of the symptoms that lead me to the doctor in May.  I've been using it for several months now and it's working very well.  It's cut my cancer markers to less than half of what they had been, and it's helping to shrink the tumors in my liver.  All good news.  I have no new symptoms and since this medication is working so well, we're staying with it and just monitoring blood work.  I see the oncologist every two months unless something comes up.
Now that things are sort of on an even keel and we've settled into a new 'normal', I'd like to get back to blogging again.  Since I haven't been doing this for a while and I need to get back to it being a 'habit', I might be pretty slow at first. Then again, maybe not! It all depends on what I've seen. Or done. Or heard. I'm going to try to make the posts more frequent, though they may not be terribly lengthy in nature. But, then again, maybe they will!
Basically, the point is this: having had my life turned upside down a bit, I find that I am noticing things I hadn't before. I am seeing more things, and seeing them from a different angle, and how I feel about things? ... well that's kind of changed, too. I want to relay those thoughts and feelings, and commit them to a page - or a venue - such as a blog post.
Along the way, I'd really love it if you shared your comments with me. I'm anxious to 'meet' some of you who may have been reading my blog for a while, but haven't introduced yourself. I'd love to know what you're thinking.  
I kind of feel like this journey is starting anew. I'm ready to get started! I hope you are, too!