The Roller-Coaster Ride of Cancer Tests, Bucket Lists, and Stages of Grief
- At February 15, 2016
- By Jeannine Gailey
- In Blog
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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.
Jeannine Hall Gailey served as the second Poet Laureate of Redmond, Washington and the author of Becoming the Villainess, She Returns to the Floating World, Unexplained Fevers, The Robot Scientist’s Daughter, and winner of the Moon City Press Book Prize and SFPA’s Elgin Award, Field Guide to the End of the World. Her latest, Flare, Corona from BOA Editions, was a finalist for the Washington State Book Award. She’s also the author of PR for Poets, a Guidebook to Publicity and Marketing. Her work has been featured on NPR’s The Writer’s Almanac, Verse Daily and The Year’s Best Fantasy and Horror. Her poems have appeared in The American Poetry Review, Poetry, and JAMA.
Pat Fargnoli
oh, Jeannine,…I am so very sorry. Lots of prayers coming.
Pat Fargnoli
many prayers coming….and healing thoughts
This isn’t good news at alll.
love,
Pat
Serena
I’m so sorry to hear this. I wish I had something better to offer. I can only offer an ear and sounding board and support if you need it.
Jan Priddy
You are like those children you visited—for each of us, you are those brave children reminding us to be grateful for our lives and for your presence in our lives. kisses!
Gretchen Jensen
Oh Jeannine, I am so sorry to hear that you are dealing with this! Chris and I were just talking about his high school days and I was having fun making him recall all the feelings of those days. lol
Maybe we can come your way or you guys can hang out on some warm sandy beaches our way. =)
I am praying for you as you traverse this difficult journey.
Gretchen
Bobby Baker
Hi Jeannine, I don’t expect you to remember me from my MFA at National but I certainly remember you and have followed your career and read your books. I am so sorry you are going through this horror. You also may not remember that I was Prof in the College of Medicine U of Ky for 26 years. If there are any confusing messages from your doctors that your med student friend can’t sort out I would try my best to help. Please feel free to email me. May the Lord bless you and keep you.
Ren Powell
Much love and prayers from this little spot of earth. May you health in every way possible, and be stronger for it.
Sherry Decker
I believe in the power of prayer and have added you to my prayer list. <3
Suzanne Edison
This is a brave and wonderful blog. It is not wonderful that you are going through all this and that you have to face the most terrifying feelings and thoughts, but you are able to write about it. Don’t worry about turning it into poetry, yet. let it be what it is.
Second opinions can help. Either confirm or elucidate other issues. But they take time too. I know the decisions you are making are the hardest you’ll make. Trust your heart and what ever your mind can process.
Thinking of you J,
Suzanne
Stephanie (Wolper) Boys
Jeannine, I am praying for you. Stephanie
Bronwen
Adding my love and care to you both. Thank you for sharing this part of the journey. Your vulnerability, courage, honesty, faith are all blessings. I’ll be holding you both in my prayers that you lean on each other, speak your truth, follow your heart, and remember the perfection that is you remains as healthy and vibrant as ever.
Lissa Clouser
I’m so sorry honey. Thank you for sharing, for being brave enough to do so. My thoughts are with you and your whole family and I will be hoping for the best possible of outcomes.
Lynn Pedersen
So many difficult facets and unknowns. I only know you through your blog and writings, Jeannine, but I do hope the LA trip happens. I’m wishing you and your medical team wisdom and answers.
John Jensen
I know u r discouraged but would offer this bit of encouragement. Cancer has yet to b determined so it could b something less threatening. Wait to get all the facts. I can also give u my own experience w cancer that may help. I am 75 yrs old and have survived Hodgkins Lymphoma, metastatic melanoma, prostate cancer, chemo, radiation along with a few other unpleasant ills that come with old age. I still play golf, treadmill, lift weights and go about my business of living. Survival rates through research and improved treatments has never been as high as it is today. U have every reason to b hopeful and encouraged that a successful treatment is available for your specific issue. Keep the faith…
David D. Horowitz
We offer our prayers for healing, wisdom, and resilience. Just now words cannot express your friends’ depth and breadth of concern. So we’ll try to smile, too, despite it all. Here’s a bouquet of best wishes,
David D. Horowitz
Kathleen
Love to you as you continue to handle all of this news and the stress and worry that go with it. I’m glad you’ve got your loving and supportive mate there, and some things to bring joy and laughter. So, so sorry for your woes.
Joannie
Oh, Jeannine, this is terrible news. I kept hoping the tests were false positives–in fact, I’m still hoping that, while I’m sending healing thoughts (at first I typed “healthing,” which would also work), good vibes, my very best wishes. You’ve always been brave–continuing to create and to show up throughout many health setbacks. I’m praying this is just another blip and that you’ll be able to pack that pink valise and go all kinds of places. With love, Joannie.
Rebecca Loudon
Here for you 100%. I love you Jeannine. I am sending my prayers out into the universe of Good Things.
love
Rebecca
Penny Harter
I agree with John Jensen, above. We live in a marvelous age. I would have died had I not gone into the hospital last mid-November. And now my blood-lymph cancer is endometrial cells from a total hysterectomy in 2010, when I was told stage 1A, got it all, no further treatment needed, etc. Even my current oncologist is puzzled about how this happened.
Anyway, what I want to tell you is that I’m only halfway through my 6 month chemo course (Taxol and Carbo-Platinum), it’s not terrible to tolerate, and I’m already in remission.
The results of Friday’s chest, abdomen and pelvis CatScan, which I got from my oncologist this morning, bear that out. All looks much improved. And mine had metastasized throughout my whole system of blood and lymph.
We live in a marvelous age, and you must choose to do what feels best to you, but they can do wonders to “manage” or even stop even the worst cancers. I’m sending prayers, love, light, and courage your way. And calm in the center of the storm! xxx
Jennifer Bullis
I am so very sorry to hear this news, Jeannine, and I’m moved by your wisdom and perspective. Please know that we’re pulling for you here in Bellingham.
Jilly
Well, crap. 🙁 Really sorry to hear that. I suggest naming the tumors. Maybe something from this list? http://tinyurl.com/4zdfdt
(Trying to make you laugh)
Feel free to email me if you need to.
Adding you to Lenten prayers….
Susan Reese
Hey, gorgeous, I’m so sorry to hear that you’re facing such scary things. I want to agree with those who mention that we live in a time of medical miracles. I’m one example, but I’ve seen three this past year: they found 5 or 6 spots on my cousin’s liver this past summer and injected half and planted seeds in the others and he went into remission. My husband was diagnosed with lung cancer and underwent targeted radiation in October and he’s in remission. My eldest brother was hospitalized the last week of September with failing kidneys and not much hope and was diagnosed with lymphoma, spots in his spleen and all over his body and it’s now in remission. I wish you a miracle, too. Your gift to the world is so very bright. I send you love and prayers. And if you can, go to AWP! When I had diagnosis and surgery, our MFA residency helped save me, kept my mind on what I love and kept me from becoming defined totally by things medical. But you know that and live that best of any of us. Love to you and Glenn. And here’s to it not being cancer!!
Leslie Harrington
I read your blog for inspiration, because you’ve kept writing even with a chronic disease. Jeannine can do it- so can I. 🙂
As you always wrote at the end of any email to Board members at T.V. “take good care.” I wish the very best for you and your family. Stay strong. (((hugs)))
Jennifer Dotson
Sending healing thoughts in your direction and wishing I had some fluffy white kittens or ponies to send, too.
Judith Kerman
Oh, Jeannine – I know you’ve struggled with health issues for a long time, but I’m sorry to hear about this next chapter. There are amazing things going on in cancer treatment – a friend recently beat melanoma, and both my parents outlived cancers. Hoping this for you! And I’m very proud to have published “The Robot Scientist’s Daughter” with you. It’s one of our best books ever. Here’s to your next book!
Michaela
Oh jeannine. I can’t imagine what you must be going through. I wish you the best possible help you can get, all the right decisions, no more bad news, and shopping sprees for things to fill that suitcase with.
What a woman you are. love and light to you.
Jennifer Barricklow
This is so unfair! Know that you are loved by people who haven’t even met you, and that every minute of every day you are bathed in prayer.
Jeannine Gailey
Thank you all for your kind and supportive words. I am thinking positive for now and will let you know after I know anything else.
Carolyne Wright
Oh Jeannine, I’m so sorry to hear this news–but your reflections here are so courageous and honest. I will be praying for you and hoping that all the medical tests and prognoses ultimately lean toward many more years of celebrating life, poetry, Glenn and all your family, friends and fellow poets. Love to you, Carolyne
Suzette Harris
You are one of the most fascinating and authentic people I am privileged to know. My Gods blessings be with you and give you calm clarity.
Marjorie Rommel
Dear Jeanine, you are such a warm, genuine person, with such a great heart — I can’t bear to think the time may come when you aren’t here where the rest of us can warm our hands at your fire. Thank you so much for speaking plainly, openly — that can’t be easy — for trusting us to love and support you, which we definitely do. GET well, dear friend! BE well! We’re all rooting for you, every one of us piled in your corner (that’s quite a picture, isn’t it?) each of us in our own way praying HARD for better news.
Tina Schumann
Jeannine,
Just a note to say I am thinking of you and sending out all the positive vibes I can muster. This is tough stuff to deal with. Be good to yourself. Best, Tina