For so many years I've been a mildly active partner here, not as prolific as some because my work life is just too demanding to be able to spend much time here. However, I do try to at least get on a few times a week and catch up with what's going on in people's lives here. People that, as many of you know, we all become invested in - in some way or another.
As with many, I came here because of a need for knowledge and understanding of what lay before me. However, I think I now really understand the concept of "ignorance is bliss" because ignorant is something that would be a bit more soothing to me at this point. Through 4+ years of hanging out here you watch people on this journey. I've seen hundreds of people deal with this, struggle with it, and many die from it. It's an up close and personal view, from afar. It's been helpful to me over the years to read about other people's experiences because it has helped us. It helped me to know how to help my DH deal with certain side effects, it's helped me to feel less alone on the journey, and (sadly) it's helped me to recognize certain milestones or warning signs.
This is where the ignorance-is-bliss thing comes in, because the last few weeks I've really been wishing I wasn't so acutely aware of those warning signs. It's been a difficult few weeks for us with a blocked bile duct (despite being on chemo, which he is no longer), a stent and drainage tube inserted, issues with the drainage tube resulting in a few trips to the hospital, and postponement of the planned SIRT procedure. His CEA is now up at 245! For years he was consistently under 10 (an indication of a managed and stable disease). He also seems a lot more tired to me, but I don't know if I should chalk that up to the biliary drainage issues or the cancer. In either case, we're NOT going in the right direction here and I wish there was something I could do to make him better.
It's so impossibly hard, yet I know that there are no answers to the most common question of why. My Buddhist philosophy of life tells me that it just is and the best I can do is work towards acceptance of what is. I'm still on the hunt for treatment options. We're hoping he'll still get SIRT in the next few weeks, and I'm actively looking at other clinical trials (and a big shout-out/thank you to my "little brother" DK37 for his help there). But, thanks (or maybe not
) to this forum and my knowledge gained here, I know it's going to do precious little for him. I guess if it buys him even one more day, its worth it. But how does one prepare themselves to lose such a big part of their life? Another unanswerable question, I guess.
Don't let me leave you with the feeling that I regret finding this place. I do not. It's a double edged sword this experience and knowledge we share. I wouldn't change it for anything. I am appreciative of all I've learned, and the friends I've made along the way. And I know when I need your support most, you'll be here for me. So, thank you in advance! I am not sure why I came here to write all this today. Maybe it's a bit cathartic, but also I know there are some people here who are probably wondering where we're at. So there you have it.
Namaste, my friends!
Julia
