Help L.R.Knost Fight Cancer

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Raised by 701 people in 12 months
Help L.R.Knost with medical and related costs as she fights a rare, incurable cancer while continuing to share the gift of peaceful parenting with the world by providing donated books to families in need, hospitals, shelters, community centers, libraries, and crisis family centers.
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A little background:

So who's up for a crash course in the human genome? Not even kidding, having cancer entails not only fighting for your life, but also endless research into everything from basic human biology to cutting edge medical research to advanced genetic biochemistry. So here's today's lesson:

Just got the most recent report from one of the two clinical trials I'm lucky (?) enough to be in. This test measures the DNA shed by neuroendocrine cancer cells in the body and indicates tumor load (how many tumors are present), tumor growth (how rapidly the tumor(s) are growing), and/or metastases (extent of spread to other parts of the body).

Not long after I was diagnosed and had part of my lung removed, I had the first of these DNA tests which came back as 26.7, indicating a low activity level of the cancer at the time. Now, just under a year later, the test has come back at 46.7, indicating a high activity of cancer.

Since scans are having trouble locating the tumor(s) in my pancreas, clearly the DNA being shed isn't from multiple large tumors or a fast-growing tumor. So, the consensus is that the test indicates metastatic activity in my case. Super fun.

Now, with most cancers, rogue cancer cells and occult metastases are targeted with various chemotherapies and/or radiation therapies or even targeted immunological therapies these days, but neuroendocrine cancer is different. It's basically a stem cell cancer that morphs into clones of whatever organ or bone tissue it invades and is indistinguishable (even by the body's own immune system) from normal cells until it replicates enough of itself to create a large enough tumor to be seen on scans. What that means is that chemo/radiation/immunological therapies are mostly ineffective because they are no more toxic or targeted to the cancer cells than they are to the surrounding tissues. So in order to rid, say, the pancreas, of neuroendocrine cancer cells, they would have to destroy the pancreas along with the cancer. Not a great outcome, obviously.

So, what all of that means is that this cancer is spreading its cells in a sort of stealthy guerrilla warfare in my body, and right now there is little that can be done about it other than throwing random 'grenades' at it in the hopes that something might somehow hit the right target. And, of course, I am pursuing alternative therapies in conjunction with traditional medicines to do what I can to increase my own body's defenses.

So, how's that for a fun update? Lol. If you've read this far, congratulations, you're now one step closer to a degree in biomedical sciences. Oh, and have I mentioned recently that I hate cancer? :) L.R.
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Update (5/9): I look down into my newly-seven-year-old's big brown eyes as tears slip silently down her cheeks and she says, "I don't know why I'm crying again, mommy," with an apologetic shrug and a wobbly, uncertain smile.

"You don't have to have a reason, baby," I tell her. "You don't have to explain your tears any more than you do your laughter. Being human is reason enough."

The words of my shero, Glennon Doyle, pop into my head as I kneel down in front of my tiny, ultra-sensitive canary-girl and hug her and say, "I have a friend who is beautifully human and sensitive like you. Do you know what she says about being human? She says, 'You are not a mess. You're a feeling person in a messy world.' Do you know what that means?"

And my feisty, sensitive little human smiles her soft 'I-love-how-you-get-me' smile and tips up her fierce little chin and replies, "It means being me is okay."

Yes, baby girl, being you is okay. Being you is perfect.

My children are struggling with my cancer battle right now, and I have to be okay with that. But I can't tell you how hard it is to know your children are hurting and scared and all you can do is hold them and love them through it. This is unbelievably painful. How can I tell them everything will be okay when I don't know if it will be okay? There's nothing okay about facing the possibility of losing a parent. So instead I tell them that they will be okay and that it's okay to struggle and it's okay to feel whatever they are feeling. And I tell them I will fight to stay with them with every ounce of strength I have. If nothing else, I want them to know I never gave up. I never stopped trying. I gave everything I had to stay with them because they are worth everything to me.

I'm still waiting for the consult with the surgeons and for more results from my last surgery, so not much to update on that. I'm heading back to Mayo on Thursday for another infusion, so hopefully I'll know more then. I just want to say thank you to all of you out there who are sending my family and I happy wishes and positive thoughts and praying for us and to those of you who have donated to help with medical and travel costs and who've sent cards and letters and adorable drawings from your tiny humans. I can't even express how much you all mean to me, my gentle friends. Thank you, thank you, thank you. L.R.

Update (4/30): My six-turning-seven-year-old cried every day as her birthday approached because she doesn't want to "get bigger." Because she's afraid I'm going to die. Somehow she's got it in her tender little heart that if she stays little she can stay with me. She asks me every day if I'll stay with her forever, if I'll still be here when she grows up. She's beginning to grasp the seriousness of this cancer battle. I believe in being gently honest with my children in the most age-appropriate and compassionate way possible, but how? How do you help a tiny human understand cancer and death and the uncertainty of life itself? How do you prepare a child for the possibility of losing a parent to a horrible, cruel disease? How do you answer questions you don't have the answers to? I don't know how this battle will go. I don't know how long or short my life will be. How do you explain statistics, possibilities, and probabilities to a child who just wants her mama to stay with her forever? We're working through it. But it's hard. So hard. Happy birthday, my little princess warrior. You make everything beautiful. L.R.

Update (4/28): So, here's what we know so far. We have DNA biochemical evidence (because the cancer cells shed DNA as they replicate) of highly active metastatic cancer doing a stealthy take-over job on my insides, but all of my scans were clear. So they did an intraoperative CT scan with contrast injected directly into my liver during my nearly four hour surgery on the 18th which showed "innumerable" lesions filling my liver. Translation: most likely cancer taking over my liver. They also did some complicated test on my pancreas that showed two suspicious areas, but they aren't sure if they are in the pancreas or in the vessels to the liver. Anyway, the next step another major surgery followed by chemo/radiation therapy in some to-be-decided combination based on the results of that surgery. And they've already brought up the possibility/probability of a liver transplant at some point. This is all still pretty surreal for me. I literally went to the doctor because of a couple of mildly swollen lymph glands and some odd bruising. And now here I am literally fighting to stay alive. I just can't wrap my brain around that some days. So, anyway, that's where we are at the moment. Thank you all for your untiring support. It helps more than you know, friends. L.R.

Update (4/25): I've been trying to find words to update all of you who have been sending me happy wishes and positive thoughts and praying for me and supporting me so lovingly. But I don't know how. Too many questions were raised and not enough were answered by what they discovered during surgery. Things have taken a turn for the worse. How much worse, I don't know yet. When I know more, I'll update again. - L.R.

Update (4/18): I pack my bag for another trip to the hospital, another surgery, another separation from my tiny humans. I tell myself I can handle anything, one breath at a time.

My six-year-old is crying. I hold her close as her inner storm works its way out. Better out in the light than hidden in the darkness I remind myself, my heart shattering for the millionth time since cancer hit our lives.

As the storm eases, I help her to take deep breaths. I count my own breaths, knowing now what a miracle each one is. I listen to the cool air flow in and warm air flow out. I help my little one to breathe in peace and breathe out pain. Again and again and again.

'Just Breathe.' That mantra has seen me through six births, too many miscarriages to even think about, a precious stillborn son, countless tests and procedures and endless sickness and pain from this stupid cancer, and more. And now I share it with my children. We'll get through this, I know. But it's hard. So hard.

I hug her fiercely, my mama's heart wanting to protect her from the pain. But I can't. This is the path we've been given. One last kiss, and I say goodbye. Her quivering chin lifts and a brave smile shapes her tiny lips into a soft curve. "Hurry back, mama. I'll be waiting for you," she whispers.

I'll hurry back, God willing, my courageous little girl. - L.R.

Update (4/9): Hanging out by the fountains outside Mayo between appts. Geez, it's crazy how cancer takes over your life. You don't just have to figure out how to live through cancer, but how to live WITH cancer. First it terrifies you. Then it bankrupts you. Then it just sucks the life out of you every way it can, lol. Anyway, just a quick update. My bone marrow is barely functioning to make new cells, so for the foreseeable future I'm back on IV infusions of some kind of medical cocktail to try to boost my bone marrow function. Liver surgery is April 18th (reeeeeaaaally not looking forward to that). And I'm starting a trial run of a much harsher chemo right after that. So, we'll see how all that goes. Thank you for your thoughts and prayers and happy wishes, friends. You guys are the best. L.R. #cancersucks #butfriendsareawesome
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(Update 8/6) Snapshot of 'the recovery life' via my 11 yr old aspiring photographer who's decided to document my cancer battle in photographs. If you've followed me for awhile you know her as my 'little mud magnet' who takes way too much delight in muddy puddles, endlessly collects rocks and lizards and other 'treasures,' has adopted 'dance it out' as her personal therapist (thank you Just Dance!), plans to be a scientist/inventor/humanitarian, has fallen in love with books just like her mama, and never met a status quo she didn't challenge. I can't really call her my 'little' mud magnet anymore, though, since she's my height (not surprising since I'm only 5'1") and wears all of my clothes and shoes these days (which I'm okay with as long as she indulges in her muddy antics in her own clothes, lol). She's also a deep thinker, fiery defender of the underdog, activist-in-the-making, and tender-hearted poet. Here's a poem she wrote before my latest surgery:

A little poem about death

Like a book has a start and an end,
so does life.
There is no such thing as a book
or a life
with no meaning.
If it is to make you suffer
or cry
or laugh
or to make you think,
all these things life and books
have in common.
Life is not forever.
It will have an end.
No matter how healthy
or well taken care of,
it will end.
But you can make the best of it.
You can love.
You can explore.
So many things.
So live,
enjoy life.
Because, unlike books,
you only get one life.
G. Knost

It's hard to know my children are in pain & not be able to take it from them. But that's parenting in a nutshell, isn't it? Give them life. Grow them well. Let them fly. L.R.

(Update 7/30) Post surgery pic. A little worse for wear. I've got six abdominal incisions. Six. Crazy. Mayo did its normal excellent job in pre and post surgical care (shout out to my awesome nurse Svetlana and my other wonderful nurses and support staff and to one of the kindest human beings I've ever had the honor of meeting, Clarissa from housekeeping). I did run into a problem with a surgeon who for some unknown reason decided to depart from my post surgical care plan and abruptly and unexpectedly discharged me less than 48 hours after a major surgery that was supposed to have a minimum 3-4 days stay and sent me home (a 3 hour drive away from the hospital) with no pain meds, a blood sugar of 65, tanking hemoglobin, no instructions about what to do with the pressure dressings still in place from my central line and arterial line, and non functioning digestive system, amongst other issues. So, long story short, I'm home. Living on ibuprofen to try and survive the pain until Monday when the pain script my oncologist kindly FedExed to me will arrive and maybe I can get some real rest and start healing. Thank you to all of you who have sent cards and offered your prayers and support. You're amazing. L.R.

(Update 7/26) So, I survived my surgery yesterday. Struggling with pain control and severe nausea at the moment, but it'll start getting better in the next few days. Waiting on pathology on the lesions in my liver and on some suspicious lymph nodes. I'll update when I hear something. I'm not up to interacting online, but I have read through all of your comments. Thank you for all the love, friends. Oh, this picture is from just before they took me back into the operating room. I look a bit more like Frankenstein right now with all of the tubes and wrappings, lol. L.R.

Update (7/25): Okay, my friends, I'm headed back for surgery. Someone will update later. Thank you all for your thoughts, prayers, and support. You're awesome. L.R.

Update (7/19): I'm soaking up some newborn snuggles while shopping with two of my best friends for supplies. Getting ready to move my 'mountain' (children, hubby, et al) to a hotel near Mayo in Jax on Sunday. Pre-op at the crack of dawn on Monday. Surgery to remove half of my liver (and possibly some other stuff depending on what they find) on Tuesday. It's a big surgery. Many days in the hospital. Months of recovery. Still recovering from my last surgery. Ugh. - L.R. #cancersucks

(Update 6/19) Another day. Another surgery. I spend so much time in my van making the six hour round trip to Mayo and going back and forth to a bevy of doctors that I thought I'd just take a selfie in the van instead of the hospital this time. This surgery is relatively minor compared to the one looming on the horizon, but it's painful. Prayers, positive thoughts, and happy wishes appreciated. And if you can spare a few for my little ones at home that would be awesome. Talk to you on the flipside. L.R.

(Update 6/1) I'm at Mayo today. Again. More endless tests and the pancreatic tumor board is presenting my case today, so at least maybe we'll have some kind of a plan soon. I'm just so tired. L.R.

(Update 5/26) A day in the life of cancer. I'm at Mayo today. A day of bad news and needles and sickness and pain and no answers. A day of tiny humans crying for their mama who isn't there. A day of soul-deep exhaustion. But it's just a day. Tomorrow is another day. Tomorrow will be better. - L.R.

(Update 5/21) People ask "How are you?" and sometimes I say "I'm fine" but mostly I just say "I'm tired." Here's what I mean: https://themighty.com/2017/03/what-im-tired-means-with-chronic-disease/

The truth is, I'm not fine. Cancer is sucking the life out of my body. I'm in constant pain. I throw up more than I keep down. I'm exhausted beyond description. I'm constantly stressed about finances because cancer is stupid expensive. I'm terrified of leaving my tiny humans to grow up without their mama. I'm not strong. I'm not brave. I'm tired. - L.R.
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(Update 11/28) Heading back to Mayo. Another week, another surgery. Ugh. Not a huge surgery, comparatively, but still. Hospital. IV's. Anesthesia. Nausea. Vomiting. Pain. Recovery. I'll update in a couple of days with what's going on.

In the meantime, I've received some comments recently asking why I don't "just stick to posting things related to parenting." Since my cancer fight began many have joined us who may not be fully aware of my mission, so I thought this would be a good time to reshare my purpose, my mission statement, so to speak.

I am a writer and researcher. My work is wide-ranging, from child advocacy to social justice to peace activism. I have worked with at-risk families; mentored troubled youth; extensively researched and worked in child development; created and compiled resources for parents and families; founded and directed a child advocacy organization; campaigned and lobbied and worked for a myriad of social issues, and the list goes on. All for a singular purpose: Peace.

I have focused much of my work on parenting for the simple reason that the most powerful and effective way to change the world is to change the way we parent our children. Because peace truly does begin at home. But it doesn't end there.

Raising the next generation peacefully is imperative, but so is ensuring that the world we leave them is not one that we have torn apart by ignorance and fear and violence. And that, friends, is why my work is not limited to parenting.

My mission is quite simple. It's to help people see people instead of problems, because when we connect with the humanity of our fellow humans, adult or child, black or white or shades between, similar or vastly different backgrounds, cultures, lifestyles, or beliefs, our own humanity is awakened.

I'm just a human standing in front of other humans reminding them that we're all human. That, in a nutshell, is my mission statement.

With this tough cancer battle and just the fragility and unpredictability of life itself, I don't know how long I'll be able to continue this work. But I'm here now, and I want my voice to be heard, and I hope and pray that my message will resonate into the future.

I don't expect all of us to agree on everything, but I hope that we can agree to disagree when necessary and continue to work side by side and arm in arm for a better, kinder, more peaceful world. I deeply appreciate each and every one of you. Thank you for being here. LRKnost #youguysaretheawesomest

(Update 10/9) Why yes, I am the crazy lady who sits in her van in her driveway in ninety degree Florida heat because I'm cold. And because the big and little people who live with me insist on turning on the a/c in the house. (They're clearly part polar bear, lol.) Seriously, though, chemo is kicking my behind. Nausea. Vomiting. Chills. Mouth sores (oh, dear lord, the mouth sores). Migraines. Hair coming out in handfuls (this chemo doesn't always cause hair loss so I'm hoping that side effect will abate soon, but my little Lexipedia assures me she'll still love me if I'm bald, so I guess I'll be okay either way). Pain. And other nasty side effects like tanking platelets and red blood cells, etc. I know, I know, not everyone is a fan of chemo. But I'm a fan of living and of my little people having a mama, so I'm doing what I need to do. Just know that I'm pursuing all avenues, traditional, natural, holistic, whatever (I'm deathly allergic to cannabis, though, so that's off the table). Anyway, I've had a run of bad days recently. Pretty much running on empty right now. But it'll get better. I'll get better. Just have to get through this bad patch. L.R.Knost #cancersucks #butlifeisbeautiful

(Update 8/19) There are moments when the reality of the toll cancer is taking on my family hits hard. Like when my handsome little Hulk-man throws his arms around me in an exuberant hug and I gasp at a shock of pain that runs through me and his eyes go wide and sad because he forgot to be gentle and he whispers "I'm sowwy" while I try to reassure him that I'm okay. Like when I stare off into space for a minute trying to calculate something in my head and my tiny human magnet who spends most days glued to my side says "Are you dead? Don't be dead!" with her beautiful brown eyes filled with panic and fear. Like when my amazing teen-turned-caretaker has to be talked into going to the mall with her dad and then spends the whole time texting me repeatedly to make sure I'm okay.

It's so hard seeing how this cancer battle is hurting my family. But I keep reminding myself that it is all part of love - the worry, the pain, the fear. And, like the velveteen rabbit was loved to life, love is what makes us truly alive to wonder and beauty and joy and goodness. So, while I would take this pain from my children if I could, I will instead love them and let them love me into well-worn, tattered-and-tenderly-mended, real-as-real-can-be life. L.R.Knost

(Update 8/7) Sometimes adulting sucks. Remember when a popsicle made everything right with the world? (Warning: post-surgical rant ahead.)

I'm having a bad day. My head is killing me. My incisions hurt. I've got hives from something they used in surgery, and the itching is driving me crazy. Taking a shower exhausts me. My little people are adorable, funny cuddle-friends, but they're going stir crazy stuck at home with me every day. I can't drive for a month. I'm not allowed to lift anything heavier than a gallon of milk. The pathologists at Mayo still haven't figured out what the lesions in my liver are, so it feels like it was all for nothing right now. Nobody has any idea what this cancer is doing to my organs. We still don't have a treatment plan. I'm just sick and tired of being sick and tired. Yes, I'm happy to be alive. Yes, I'm happy to be at home with my tiny (exhausting, loud, busy, inventive, messy, adorable) humans. But geez. L.R. #cancersucks
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