Heroes

Tonight I'm laying in my hospital bed that has been set up in my bedroom at home, the moonlight pouring through the window under the breeze of the fan. I'm roasting. It has been a wild day. The home health nurse came for an intake this morning to ensure I'm set up well after arriving home last night. There were doctors appointments and we finally had my tumor markers checked so we can avoid as many CT scans in the future...average is about 220...mine is 534. We new the tumors were growing like wildfire, and at least we can measure it with few CTs now.

My oncologist has become one of my heroes. Today as we talked again about the significance of quality of life, of knowing what I want and making shit happen - he is part of my army working with my insurance and palliative doctors to make sure I get the quality of life I want. I am not a woman who will idly sit on my couch waiting to die, he gets this and I feel so heard and fought for by him right now. We are talking about how I can keep working a little bit to feel like I am contributing to society and how to make my dream of a summer beach trip a reality. I have so many heroes in my life - so many incredible supporters, champions and dream-givers.

I transitioned home last night on pain patches, but still ended up needing pills this evening...the pain is getting worse.  We are gearing up to start the new treatment plan tomorrow...The drugs are ordered; we know it's a wild unknown...my doc has never used these drugs, and we have no idea what to expect. And yet I am more at peace about this treatment plan than any we have thus considered. It doesn't mean it's easy. There has been much grieving in the last few days...things I'm sad I might miss.

Grieving doesn't mean I'm giving up. I still have a big fight in me, and many wild miracles, but I cannot ignore the pain, the what-ifs and whens of a wildfire cancer that forces me to look within and be blessed by the beauty and the pain that simultaneously walk side-by-side in my life presently.

Tonight my family and I went on a picnic at Green Lakes trail head up the Cascade Lakes Highway...a little table by the streams and cooled off in the mountains. They are my heroes. I wrestle with how things could have gone differently had I died on the the surgery table back in March, and although that would have hurt, it would be a different pain. Instead, we are blessed with living daily with the pain, my lack of energy and our very different pain. Each day the blessing, beauty and heartache are with us.  That's okay. I am so thankful for my co-survivors, my family who has the daily routine of experiencing every part of this with me and I am more in love with them than ever.

Have you hugged your family today?