The Roller-Coaster Ride of Cancer Tests, Bucket Lists, and Stages of Grief

Happy post-Valentine’s Day, everyone. I’ve been dealing with some heavy news, and not sure whether to or how to share it. This post may disappear later, or parts of it will. For now, for anyone that’s been following my health scare from the last post, here’s the follow-up.

After the CT scan in the emergency room about ten days ago, things went from bad to worse. The CT scan showed 4-5 lesions suspicious for metastasis in my liver. The follow-up MRI a few days ago, which is supposed to be a more accurate test, said the news was even worse than we expected  – 10-15 liver tumors, some of them 2.3 cm/2 cm (the larger the tumor, the worse the news, and the more tumors, the worse the news) once again, the report said, “suspicious for metastasis.” I was stunned. I think I’d honestly believed the first test was a fluke, but this report said no, it was no fluke, and yes, something seriously wrong was going on with my body. I got calls from my gastroenterologist and my hematologist – they wanted to go ahead with a liver biopsy, super dangerous for someone like me with a rare bleeding disorder, requiring not only an overnight stay in the hospital with the oversight of my hematologist – a leading specialist in weird bleeding disorders and rare cancer types – but taking some experimental drugs for my bleeding disorder I’ve never tried before, plus maybe blood plasma infusions. I want to slow down, make educated judgements, maybe get a second opinion. I still feel some paralysis when it comes to next steps. Maybe I don’t want any more bad news, and I certainly don’t want to die accidentally trying to get more bad news from a biopsy.

So that’s where I’ve been the last few days, trying to make sense scientifically and spiritually. A friend of mine in medical school has been calling regularly to help make sense of my test reports and doctor’s comments. My neurologist sent me a link to all the things that aren’t cancer that liver tumors can be, telling me she wished me the best and reminding me of the scare I had when they found the mysterious five lesions in my brain. People here on the blog and on Facebook have been as supportive as they possibly could be. My little brother came over the day I got the MRI news to help a somewhat shell-shocked Glenn and I deal with the news. It’s possible what’s showing up on the scans is a kind of fast-moving metastasized cancer – or something serious but other than cancer, like a serious infection or autoimmune problem that would still not be great news, especially for my liver. And I can’t find out exactly what’s going on without doing a test I don’t want to do next.

I started thinking about bucket lists – you know, the things you do if you found out you only had x amount of time to live. Most people think of exotic trips, jumping out of airplanes. I thought of the things I’d really want to do if I had very little time – spend time with friends and family, maybe make time to be with more animals (if someone could deliver a bunch of white fluffy kittens and miniature ponies to my doorstep I’d be much obliged), read, be in the woods. I’ve really, I realized, by 42, achieved a lot of things I’d always wanted – I always wanted to be a poet, and by the end of this year I’ll have five books of poetry out. I married a wonderful guy and this year we’ll have been married 22 years. I have pretty good relationships with my parents and my three brothers. I’m not going to leave behind small children. I don’t have that many regrets. I live in a beautiful place that I wouldn’t really want to leave – I’ve been to Paris and the South of France, I lived in Napa and Carlsbad, on islands like Bainbridge Island and a seaside resort town called Port Townsend – but I’m happy where I am right now. My bucket list wouldn’t include a lot of changes to the life I’m living right now (well, sans painful medical tests and doctor and dentist visits. I’d probably lose those. And maybe the house shopping – did I mention we’re still doing that? And taxes. I’m still worried about them.)

I want to go to the AWP LA, still. The thought of beautiful sunny beaches AND spending time with friends across the country is very appealing right now, I can tell you. Glenn’s Valentine’s present to me this year was a new piece of carry-on luggage (in pink! Valentine’s-y!) – a symbol of hope, of reassurance that I will still be doing things I want to do. I was joking I had gone through all the stages of grief with this bad and unexpected news – anger, denial, bargaining, depression and shopping…that’s a little humor, folks. I know the last one is acceptance. I just maybe haven’t quite made it there yet. I keep hearing the refrain from Liz Phair’s “Polyester Bride:” “He keeps telling me you’ve, you’ve got time/ but I don’t believe him/ you’ve got time…”

I’ve been reading the Bible with renewed interest (I don’t talk about it much here, but I am a Christian, I believe in an afterlife and maybe even a pre-life, the idea that our souls live after our bodies somewhere else, and probably lived somewhere else cool before we were born). I’ve been thinking about wills and living wills, graveyards and tombstones. I’m making plans I didn’t want to have to make for years. I’ve been thinking about the time I spent working with terminal children at Cincinnati’s Children’s Hospital all those years ago, how they cheerfully confront death, testing, and terribly painful treatments like champions, way better than the adults at the other hospitals I volunteered at. I want to be like those kids – taking the good stuff – playing with stuffed animals, coloring – in stride with equal grace as bone marrow transplants, chemo, and losing their hair. They were not afraid, and they were all pretty much, no matter what religion, convinced there was a Heaven and they were going to go there. They were, to a kid, unquestioningly brave. There’s a lesson in there somewhere for me.

I still have some scary stuff to face. The doctors don’t have all the answers for me. I may have to face already-metastasized cancer, and if this is something bad going on besides cancer, it’s something fast-moving and bad. Yeah, none of this stuff is wonderful for me to face. It’s not fun. I’m not sure how to handle everything, or process it. The science girl in me is doing lots of reading and research, and the poet part of me is sad I haven’t really been able to write about it yet, turn it into art. The rest of me just wants to hug my husband, my cat, listen to Nirvana, and watch things that make me laugh – old 40’s screwball comedies, Mystery Science 3000, 30 Rock reruns. I want to enjoy the things I can still enjoy. I want the maximum amount out of the life I have left.