YOU are making a difference!

I joined this discussion board over a month ago, and although I’ve only posted once, I log on almost every day to read the threads. It’s been so therapeutic to me. I want to tell you all that you are all making such a difference in people's lives by being a part of this site. It’s so comforting to see the support, advice, information, humor, and even heartache. I’ve learned so much from this site…it’s helped me to know what to ask my mom/dad, how they might be feeling about things, and what “mets” are :-). You should all know that you’re providing encouragement, reassurance, and comfort to many, even when you don't know we're reading. It was this board that convinced me to encourage my dad to keep looking for options.

Dad’s got an appointment at Huntsman Cancer Institute on Monday the 12th! It’s funny…when I found out dad had an appointment at Huntsman, I first called my husband to share the news. Then I immediately thought “I’m going to post this on CSN, because they’ll all understand how excited and hopeful I am!”

I’m really scared/hurting for my dad lately and am putting out a plea for everyone to keep their fingers crossed and/or say a little prayer that Huntsman has something that will help. We know that a cure might not be possible, but we’re hoping for even something that will allow him to continue to live longer and not feel worse, or maybe even feel a little better.

I’m in my 30’s and live about 3 hours away from my parents. I have a family of my own (2 teenagers…yikes), and work out of state 4 days a week. Therefore, I haven’t really been involved in the day to day business of dad’s illness. To be real honest, my parents have been “shielding” us from all the details and how serious things really are. However, over the last month things have become pretty grim (I overheard a doctor say something and then made my mom tell me EVERYTHING).

My dad was diagnosed with colorectal cancer in 2003. He had chemo/radiation followed by surgery (installing colostomy) in March of 2004. That was followed by additional treatment (he’s had so many rounds of chemo and radiation, I can’t keep track). A later scan indicated mets in the lungs. At least one was inoperable because of the location. More treatment and a couple more surgeries (including the removal of a full lobe of his lungs). An additional tumor was found in his pelvic area, near the hip. More treatment……more treatment.........more treatment. This winter, he took a fall that broke his hip, which had been weakened by the tumor. He had been in pain before, so he didn’t even know it was broken until about 2 months later when he didn’t feel better! Somewhere between diagnosis and now there were a couple serious bouts with pneumonia, a blood clot, neuropathy and other symptoms caused by the treatment used to save his life. He has lost feeling in his right leg and has difficulty walking. Needless to say, he's had to deal with one thing after another, with very little down time, since diagnosis. Last month he was admitted to the hospital for a bowel obstruction and pain he couldn’t get on top of. While treating that, they also found that one of his kidneys was not functioning well because the pelvic tumor was surrounding the “connector”. His doctor said that there wasn’t much they could do for him and put him in contact with hospice. They said he "might be around for another year". Hearing this felt like getting kicked in the stomach. It was discouraging that the doctors they had so much faith and trust in were throwing in the towel. Although it was always in the back of my mind, it was the first time I truly felt like he might not beat this. We all took a couple days to absorb this and dad decided he wasn’t ready to quit.

He met again with the local doctor last week and asked if there were any other options, and if they would refer him for another opinion. We live in Idaho, so there isn’t a local NCI/NCCN treatment center. I don’t know that treatment would have been any different had we searched for a different treatment center/doctor sooner. They have been VERY aggressive in their treatment up until this point. After researching, they’ve decided to pursue Huntsman (in Utah). First of all, they were so friendly and welcoming when I talked to them. I called quite a few different places and they were way above the rest in making me feel positive. Secondly, we’ll be driving to the visit, so it is the most practical place. Third, I’ve read some really positive things about them and loved their “education” section on their website. So, I’m really hopeful things are looking up.

Anyway...that's "my" story. I am so glad I have a place to share it. This website truly is a godsend.

-Danialle