10/10/2019
"A life can be so hard and so Beautiful at the same time" L R Knost...
An experience of breast cancer fighter... kudos to you...
https://m.facebook.com/story.php?story_fbid=2661288260568428&id=182279478469331
This is about as stark a portrait of the reality of life with cancer as I can show you. Laying on the floor of the bathroom. Too weak to get up. Trying to catch my breath after a severe asthma attack caused by this horrific cancer. My littlest comes to me with a little pillow which she slips under my head and some water, kisses me on the forehead, and says, “I’m right here if you need me.” And I lay here, gasping for air, and wondering, how can life be so hard and so beautiful at the same time?💞 L.R.
Previous updates...
Soooo happy to be home and past this last round of chemo. I’ve been ridiculously sick and that hasn’t eased yet, unfortunately. But sitting outside in this lovely fall weather is good medicine. Sorry for no makeup. I just feel too awful to care. Luckily the light out here is beautiful and masks the circles under my eyes, lol. I don’t really have any updates. Just keepin’ on keepin’ on atm. The scans found ‘something’ in my chest that they’ll be keeping an eye on, but for now nothing to worry about. My blood counts are still concerning, so we’ll see what happens with that over the next few weeks. Funny story, I had to be at Mayo for a couple of days of appts, so we got a hotel nearby. My labs and chemo were scheduled for very early in the morning so I left my littlest sleeping at the hotel with her older sisters. The whole time I was in the chemo suite, nurses kept popping their heads into my room looking for my ‘sidekick’ and then looking disappointed and jokingly demanding to know why I’d come alone. It’s amazing how this cancer battle has become so interwoven in our lives. Even five years into it I’m still resisting accepting this as our ‘new norm.’ But I’m incredibly grateful for the kind and skilled medical team I’ve got on my side. I literally could not ask for better. And I’m so grateful for all of you, too. Coming on here and reading the messages of love and support you leave means more to me than you can imagine.💞 L.R.
Chemo day. Not fun, but I got a room with a window this time and got to watch it rain and then all this beautiful light you see in the picture flooded the room when the sun came back out. So at least there’s a bright side to things (bright side 😂). After getting hooked up to my chemo (after a couple of hours of premeds, which I’m still slogging through atm) I go over to the hospital building for tests to try and figure out why my lymph nodes are swollen along my collarbone. Happy wishes, positive vibes, and prayers that nothing else bad is going on would be much appreciated, friends!🌈🌻🙏🏼 L.R.
🤞🏼
Chemo day with my little friend. They found a new swollen lymph node on my collar bone that’s a bit concerning, so more tests to come. And my blood work is still not great despite the iron ‘blasts’ they’ve been giving me, so we might have to go the bone marrow biopsy route. Ugh. Anyway, nearly done in the chemo suite so we can head hoooooooommmmeee. Yay!!!💞 L.R.
My youngest just casually asked me: “What kind of party do you want when you die, mommy? A sad party or a happy party?”
I froze for a moment, caught my breath, then answered as calmly as I could. It’s so strange how death and death-related subjects have become a normal topic in our family. It’s not a daily thing, but it pops up so casually and unexpectedly in conversation that it catches me off guard and I have to take a minute to regain my equilibrium. My children have spent the last five years with a parent battling an incurable cancer. They’ve sat in hospital waiting rooms chatting with people who are fighting for their lives and with people who are dying. They’ve played out hospital scenes and deaths and funerals with barbies and babies and stuffed animals. They’ve drawn pictures of death and their version of life after death. It’s therapeutic, I know. Children learn and process through play. But it shatters my heart every time.
A few weeks ago while watching my youngest draw a picture depicting a family gathered around to say goodbye to someone in a hospital bed, I started thinking about the moment of death and the moments after, what that might feel like, what the person departing might be thinking and experiencing. My processing is through writing, so I wrote. As it turned out, I wrote my own epitaph. I titled it Epitaph #1 because I’m sure more will follow as we continue this dance of life and death intermingled in the beautiful ordinary of our days. It may be uncomfortable, but I’m sharing these things with you, my friends. Because these are realities we will all face at different times and in different ways, and I’d like to think somehow my story in all of its rawness and mess and lovely moments and hard moments will help you when you face those realities in your own lives.💞 L.R.
Chemo day. The good news: My little one kept the nurses entertained. The bad news: This chemo may be causing ‘cerebral ischemic demyelination’ (aka. progressive brain damage). It’s listed as an extremely rare side effect of this particular chemo, but my oncologist has never seen it before in his own patients. My brain MRI shows the beginnings of demyelination, which is obviously a serious concern. So now the neurology dept. is consulting and I’ll be going in for tests to figure out if it’s the chemo, the cancer, something else, or some combination causing the damage. I’ll still be on this chemo for the time being, though, because it’s one of my last treatment options. I’m not sure what to hope for. If it’s the chemo then I have to stop the infusions and may be out of options. If it’s the cancer (not mets from the cancer, but reduced blood flow to my brain caused by the cancer) then that means the chemo isn’t working to suppress the cancer and, again, I may not have other options. If it’s something else it could be another whole thing I have to fight. Ugh. Anyway, I’d appreciate all the good vibes and healthy wishes and healing prayers you have to spare, my friends. This rock-and-a-hard-place stuff is, well, HARD.😕 L.R.
(see what I did there? 😂😂😂)
My littlest hugged me while I was still hooked up to the 48hr chemo pump I leave Mayo with every two weeks:
“Mama, you smell like chemo.”
“Really? Does it bother you, baby?”
“I think it’s hurting you.”
“It does make me sick. But it’s fighting the cancer. So that’s good, right?”
“Maybe. I don’t know. I think it’s hurting you.” (She’s not wrong. More on that in next update)
Later that night I woke up to her sobbing beside my bed. Apparently she’d tried to wake me and when I didn’t wake up immediately she thought I was dead. After I calmed her and assured her I was okay, I asked what she did when she was scared:
“I found an adult I trust, like you told me to if I was scared.”
Behind her my 13yo raised her hand. “Adult.” (clearly proud of the designation)
I smiled my approval at my little adult child, then looked back at the small person still burrowing into my arms for comfort. “And did she help you?”
My littlest nodded. “She came with me to make sure you weren’t dead.”..
This story sounds amusing. But it’s not. My children live with the fear of me dying. They see my pain, my sickness, my exhaustion, my lungs shutting down over and over and my too-frequent use of a rescue inhaler to try to breathe. I try to keep as much of the reality of this beast from them as possible while still being honest with them and letting them be as involved in this cancer battle as they want to be. Because it is our reality. Denying reality doesn’t make it go away. I hate this for them. So much. But I can’t take it from them. I can only hope that in the midst of all the pain and fear, they learn to love hard and to live compassionately and to never pass up a chance to laugh until they cry. Because tears and laughter and loving and giving all have their own unique healing powers. And I hope they learn that even when it seems impossible, when there seem to be no good solutions, when it would be easier to give up and go home, that no matter what they face in this world, they’ll learn to stand their ground, to fight for themselves and others, to never surrender to despair or apathy or hopelessness, and that love, truth, goodness, kindness, generosity, and hope always win in the end.💞 L.R.
For those who’ve asked:
Medical GoFundMe💞
https://www.gofundme.com/help-lrknost-fight-cancer
Address for cards and letters and cute pictures your tiny humans draw💞
L.R.Knost
10524 Moss Park Rd.
Suite 204-288
Orlando, FL 32832
I've had a rough couple of weeks and last night was no exception. Normally my middle-of-the-night sickness doesn't wake anyone, but somehow last night at 3 am my little Lexipedia heard me and came stumbling in asking how she could help, sweet girl. I asked her to get my nausea medicine and water, which she did, but I was a bit preoccupied and didn't pay much attention to what she did next. I vaguely remember her going back and forth from the bathroom to my bedroom multiple times and saying something about making sure I had what I needed before she went back to sleep, but that's pretty much all I remember. It wasn't until this morning that I saw what she'd been up to. She'd lined up what she considered to be 'necessities' to get me through the night on the windowsill behind my bed:
•Water bottle - check.
•Random bottles of ibuprofen, children's Motrin, activated charcoal for toothbrushing, and leftover children's prescription cough syrup - check.
•Half-used roll of toilet paper - check.
•Vicks V***r Rub, hand cream, and baby oil - check.
•Tiny green plastic alligator - check.
•Homemade kaleidoscope - check.
I can only say, it's a good thing I had that alligator and kaleidoscope or I'd have never made it through the night, lol. Cancer really, truly, absolutely sucks, but my children are growing into some pretty amazing human beings in our messy, happy, scary, harder-and-more-beautiful-than-we-ever-imagined-it-would-be life. I guess that's our silver lining.💞 L.R.
Why is it that so often people seem to forget that the person they're interacting with online is, in fact, a person? For the most part the people I've encountered here and on my other social media platforms have been so amazing. Even with such a large community, I recognize many of your names and smile when I see a notification that you've left me a comment or sent me a message. It's like getting together with friends for a chat every day, and I love it.
But there's a dark side that intrudes, often from a random person who sees something shared from my page and decides to be unkind. I've had people leave messages asking why I don't just kill myself since my cancer is incurable. I've had people tell me that they'd love to follow my work, but if I'm not open to alternative treatments (I am.) they can't hang around and watch me kill myself by taking the chemo my medical team is using to try to treat this cancer. I've had people tell me they hope I die from this cancer. I've had people tell me to stop sharing my cancer battle because it's too depressing for them and that's not why they come here. I've even had some threats which I won't go into. Anyway, I guess I'm just venting a bit. There's really no good answer to my question, I know.
So, on to my update. This last surgery was unsuccessful in finding the tumor in my pancreas, but we have to keep looking because it's spewing insulin into my system and crashing my blood sugar with increasing suddenness and severity. Unfortunately, I went into the hospital with a minor cold and came out with bronchitis/pneumonia (they have to treat aggressively either way because my immune system is compromised and don't want to add to my radiation load by doing an x-ray to confirm pneumonia) and so my recovery has been very difficult and painful. Soooo much coughing and wheezing and sickness and exhaustion. I just want to curl up in a ball and hide until it all goes away. But I'm a bit better today. A bit. But I'll take it. Every step in the right direction is a good step. As soon as I heal from this chest infection I have another surgery. This one a little more invasive than the last. I'll update when I know more.💞 L.R.
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.💞 L.R.
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.
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,
love,
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.
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.
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.
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.
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.💞 L.R.
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.
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.
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.
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.
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.
