Tags
acceptance, cancer, cancer sucks, care, death, dilaudid, doctors, Emmie, epidural, hospice, hospitals, melanoma, miracles, nurses, opiates, pain, palliative care, PCA
I honestly don’t even know where to start, other than we could NOT keep my pain under control at home, so I got another round at the ER. Whee! Once admitted to the hospital (because of course I was admitted), we’ve been on a crazy roller coaster of plans changing, re-changing and generally being all over the place. At one point, we were sure the end was nigh, and then a few hours later, we got some contradicting information. It’s been nuts.
However, it seems as though we now have a semi-stable plan to get me out of the hospital and things should work out.
There are a few pieces of important information (a lot, actually).
- After trying to get my pain under control with dilaudid and a PCA, it quickly became clear that this would not be feasible. My pain was rising too high, too fast. This reminded me of Alicia, when they remarked on how they had never seen anyone tolerate such high level of opiates (made me wonder how we compared, haha).
- They decided to do an epidural with alcohol (I think. Don’t quote me on this because I remember nothing of if, which is a good thing). The epidural is not like a birth epidural. It’s permanent, I have a permanent catheter (boo), but it is super duper effective. My pain is now essentially gone, except for some pain in the morning, which we are trying to manage.
- I have decided not to do the PSL clinical trial (can’t remember if I already wrote about it, but it was my last ditch option.) It wasn’t that I was giving up on my treatment options, but the reality was that I was not going to be able to get off my steroids in time to qualify (since I had been trying since June and I truly think that they have been a big part of me feeling better). Plus the thought of trying to get me to downtown Denver with all my equipment was simply more than I wanted to think about.
- Because I am not not seeking any treatment options now, that makes me a candidate for hospice, which is HUGE. If you are in hospice, you cannot be seeking any treatment, so the study would have knocked me out of hospice. And the HUGE problem was that no one was willing to take me on with my epidural (it’s a little complicate to manage).
- One of my other options was to go home and have home health nursing help, but aside from the fact that they pretty much couldn’t do it, that put a tremendous amount of stress on my family, who has already been amazing. Not only can they not be expected to be nurses, they legally can’t do things like change the catheter or the crazy narcotics. Hell, even the nurses themselves have to have two of them so they can “witness” disposal of extras.
- So hospice was kinda the only choice available to us for what we needed. Thankfully, it looks like it will work! The plan now is for me to have an evaluation by hospice tomorrow, and then (fingers crossed) head to hospice!
- Totally random, but needs to be said: the nurses and doctors, honestly the whole freaking team, has been beyond amazing. They are there when we need them, they explain things to us and are just generally super wonderful. We could not have done any of this without the docs and the nurses here.
- Also SUPER incredible have been my family. Someone is always here with me, even when the beds suck. They are listening to every doc (since I’m on heavy drugs and really can’t remember or understand), they are catering to my every whim (I try to to be nice about it, but if you need want and you can’t reach it…) and generally being incredible. My dad has watched Emmie every night I’ve been here and has been a rock star. Friends have also been super wonderful.
Now, if we can get my pain totally under control and there are no more pain crises, there is a chance that I can go from hospice to home. We’ll see.
I want to address something here that seems to have been coming up a little bit more lately, and also seems more relevant:
I will die. This is not a cancer that there will be a “miracle” for. My body is making it clear that we are moving toward that eventuality, though no one can predict when. So when I see people “praying for a miracle” on FaceBook, I get, I totally do, but please know that a miracle will not happen. It already has. NONE of the doctors know why I got better in February, and I am completely content and happy with the extra 6 month I got. I mean, DAMN!
Honestly, I’m getting tired of all of these roller coasters of pain and hospitals. I want my pain to managed until the end, but there is no way in hell I want this to continue forever. NONE of us are mean to live forever. You know death and taxes? They were not making that shit up. I feel like I have run a good run, fought a good fight, done as much for Emmie and Peter as I could, and anything left will have to be left to those who remain.
I’m tired. I hurt. I don’t feel like I’m dying right now, but I think I’ll be ready when the time does come, and I ask for your grace and love at that time.
Big hugs and kisses.
Clare said:
Oh Shannon. What a moving post. I am in awe of how you write things in such a positive way despite what you are going through. You have truly touched me since I started following your story. Thank you for sharing and being a true inspiration. Clare ❤️
Cathleen Coburn said:
Oh Shannon, my heart is so with you. And Peter. And Emmie. And your Mum and Dad, PJ and Heather, your uncle Jack–your whole family and friends. What made me cry the most in this incredible post–how you are a writer!–was the courage you give US to speak and live truth. US. I was one of the ones who wrote a goodbye back in February so I well know, as best I can from cyberspace (and loving family emails) that the time is coming, t his time, truly. You know it sounds cliche that you have taught us more about living as you are dying…but OMG, it so, so, so true. There aren’t words that I know in the English language that could express my personal gratitude for that, or that could express the magnitude of your gift. Aunt Gert always, always told me you were special. She was right. She knew the moment she laid eyes on you. There will be an hour one day soon when if dreams come true, you will see her again. Please tell her she was so right. And that I miss her and think about her so often. Also, please, when you leave this world for the next, and I’m betting on a next, please give my darling sister, Heather, a long, long embrace and kiss for me. I just know you shall enjoy each other immensely. And how that makes me smile for you, for you both. I’m not going to lie. You leaving is going to be horrific for family and friends. But it is not a lie to say, that just thinking of you, Shannon, is instantaneous with a smile…because you are amazing. Truly. No hyperbole. Honest to God, you are amazing. With so much love, Cousin Cathy…
Brandi said:
Thank you for writing the update. I love to hear what is going on with you and I didn’t want to be a bother texting. You are constantly in my thoughts and I continue to send so much love and pain-free thoughts your way. I am so beyond happy that you were able to get the extra 6 months. More time to write in your journals, go to Disneyland and see your brother get married. I know how important those things were to you. And a vow renewal to boot – woohoo! I wish so much that you could have more time. For now though I will just wish you to be pain free and to have some quality time with Peter, Emmie and your family. You have been an extremely important person in my life and helped me in ways that I know you understand. You are literally the most generous person I have ever met. Generous with your time, with your knowledge, with your compassion, just generous! Thank you for being you! I love you!
Rob Hill said:
*crying*
You’re 1,000 times stronger than any steel. I hope you know how much you mean to all of us.
Netty said:
((((((((((((((((((((((((((((SHANNON)))))))))))))))))))))))
(((((((((((((((((((LOVE IS THE ANSWER))))))))))))))))))))) ((((((GRACE))))))) (((((((((((((((((((SHANNON PETER AND EMMIE)))))))))
(((((((((((((EVOLUTION)))))))))))) (((((((FAMILY FRIENDS))))))))
(((((((((((PAIN FREE))))))))))) ((((((((((GRATITUDE)))))))) ((((((SUPER-DUPER BIG HUG AND KISSES)))))))))))))))
Dearest Shannon
I’ve always believed that every soul has something share.. something to present to the greater good.. Thank you for sharing your journey.. your unflinching “self” with us.. your sunshine and shadows…
We are all children making our way on this earth… finding our way home
I wish you love.. I wish you peace
Netty said:
((((((((((((((((((((((See ya on the other side)))))))))))))))))))
XXOOXOXOXOXOOXOXOXOX
NETTY
Netty said:
Diane & Todd xoxoxo said:
Dearest Shannon,
Praying for pain healers to come to you at this very moment and to keep coming. Praying for pain to go completely away. Praying for continued strength and peace for You and your Family <3 Much MUCH Love to You. The very Miracle has always been and always will be You – A most courageous and gifted writer for all time <3
I am honestly a truly changed person knowing you – especially through your writing these past years. It has and currently is helping me with my struggles. Please know that I will continue to go back for as long as I'm able and reread your writings for strength and guidance. Thank You more than I can express for your valuable gifts to this world.
Diane (& Todd too)
Antonia said:
Shan, you’re remarkable. I have no words besides. My heart aches for all you’ve gone through. You’re beautiful inside and out, you have an amazing family. You are sunshine.
((Gentle hugs))) (cinnmoncox0)
Jenn Abarca said:
Beautifully said. Also, you should know we dedicated our moving meditation to you last night–hope that also helps to bring you peace and relief. Please let me know if there is anything I can do to help.
John Casey said:
Somehow I think you already know, Shanny:
“The secret of life
Is enjoying the passage of time.
Any fool can do it,
There ain’t nothing to it.
Nobody knows how we got
To the top of the hill.
But since we’re on our way down,
We might as well enjoy the ride.
The secret of love
Is in opening up your heart.
It’s okay to feel afraid,
But don’t let that stand in your way.
‘Cause anyone knows
That love is the only road.
And since we’re only here for a while,
Might as well show some style.
Give us a smile.
Isn’t it a lovely ride?
Sliding down, gliding down,
Try not to try too hard,
It’s just a lovely ride.
Now the thing about time
Is that time isn’t really real.
It’s just your point of view,
How does it feel for you?
Einstein said he
Could never understand it all.
Planets spinning through space,
The smile upon your face,
Welcome to the human race.
Some kind of lovely ride.
We’ll be sliding down,
We’ll be gliding down.
Try not to try too hard,
It’s just a lovely ride.
Isn’t it a lovely ride?
Sliding down, gliding down,
Try not to try too hard,
It’s just a lovely ride.
The secret of life
Is enjoying the passage of time.” –James Taylor
I love you.
Papa
Diane said:
So moved. Bless You and Gretchen for raising such truly wonderful and inspiring children. So moved by your post.
Love, Diane
Bill Casey said:
I am sitting here just not knowing what to add but letting you all know I love my family and you Shannon so much right now. Diane, agree….so proud of my brother and sister in law and Shannon and Peter and his family. Words fail but James says a lot always! Love you all.
Uncle Bill
Diane & Todd xoxoxo said:
Much love to all of you <3
Coleen (redheadbaker) said:
You are simply amazing. I don’t know that I would have your strength, were I in your situation. Thank you for sharing your journey. Wishing you as much pain-free time as possible. ♡
sarah reed said:
*speechless* Beautifully said. I hope you have no pain when that time comes.
Amanda Vaughan said:
If life was fair, you would live to be a 100. I hope the next days, weeks or months go as you would like them to with as little pain as possible.
Katie said:
I know we only “know” each other as Nasties and interwebz friends, but you have always been one of the kindest people I have known and I am so thankful to have been inspired by you. We are also both sunflower lovers <3 I will remember your courageousness and think of you whenever I see NPH. I wish you peace and comfort and love.
Pesky said:
through our “nastie” board, your courage, wisdom and heart have inspired us all to greater kindness. Thinking of you often.
Lisa Goodrich said:
Dear Shannon, thank you for being my friend, making me a much better dance teacher, and a better person through being the graceful soul that you are. What an honor it was to dance with you and share improv moments.
Thank you for continuing to show everyone what being human looks like at it’s very best.
I want to scream and cry and throw heavy things. But in honor of you and to follow your glowing example I will attempt grace and love.
See you on the flip side.
Dan Lisuk said:
Dear Shannon,
We don’t know each other, but I am blessed by knowing your father through our college days. Your spirit and writing talents have combined in a way that these past many months have truly been your gift to me. Thank you.
Wishes for strength and peace in your next journeys,
Dan Lisuk
Netty said:
((((((((((((((((((((((((FREEDOM)))))))))))))))))))))
((((((((((((((((((((((LOVE AND LIGHT))))))))))))))))))))))))))))
((((((PETER EMMIE MOMS AND DADS BROTHERS FAMILY AND FRIEND))))))
((((((((FLY FREE….))))))
XOXOX
ALWAYS
NETTY
Netty said:
Diane & Todd xoxoxo said:
<3 <3
Netty said:
(((((((((((SHANNON))))))))))
Jennifer Secrist Goran said:
Through tears and with a broken heart I send love and strength in these days to come to Shannon’s family. Shannon was the bravest of the brave and the wisest of the wise. It was an absolute honor to know her and be able to share our love of dance together! I know I speak for the whole troupe here at Tribe Nawaar when I say that she inspired us with her strength, creativity, passion and kind soul. Shannon, you will be missed beyond words <3 <3 <3