Posted on July 25, 2016
Posted on July 25, 2016So 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:
This is a picture (it's in the photo gallery toward the end) of 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.
Posted on July 25, 2016
Posted on July 25, 2016I've received a few comments recently asking why I don't just stick to posting things related to parenting, and I realized that during my absence since my cancer fight began many have joined our community who probably aren't fully aware of my mission here. So I thought this would be a good time to share again my purposes, 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 and 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, really. 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 somewhere in between, similar or vastly different backgrounds, cultures, lifestyles, or beliefs, our own humanity is awakened.
As I've shared before, 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.Knost
Posted on May 19, 2016
Posted on May 19, 2016From shortly after my diagnosis a little over a year ago:
Many of you have asked me how I’m staying so calm and positive in the face of a rapidly approaching surgery to remove the tumor that doctors are 99.9% certain is a rare form of cancer. The simple answer is, “I’m not, at least not entirely.” There are times I feel overwhelmed and stressed and can’t help thinking about the ‘what-ifs’ and times I worry desperately about my children’s futures. Those are the times that I gently ‘parent’ myself and I find my children gently ‘parenting’ me. When I’m lying awake, too stressed to sleep, I tell myself, “It’s okay to be scared and overwhelmed. Those feelings are normal,” and then I try to identify specifically what it is I’m stressed about at that moment and come up with at least one solution, one proactive thing I can do, to address the issue. Once I’ve identified the problem and come up with a solution, I can sleep more easily.
When I’ve spoken with a bit less patience than I normally do to my littlest, she will first ‘check with me’ to see if I’m mad at her, “Do you mad a me, mama?” (“Are you mad at me, mama?”) and I’ll say, “No, I’m sorry. I didn’t mean to speak so impatiently to you. I’m feeling a little stressed, but it’s not your fault.” Then she will climb into my lap, put her tiny hands on my face, look into my eyes, and say, “Wet’s bweef togedew, k?” (“Let’s breathe together, okay?”) Note: I don't get mad at this tiny little newcomer to our world, not ever, but she's in the stage of identifying emotions and often will ask about emotions as a part of her learning process. :)
My little Funny Face (8) is gifted with a will of steel and a heart of gold. She’s clingy right now, having a bit of trouble sleeping, asking a lot of questions, and using the word ‘cancer’ frequently (causes a minor shock to run through me every time, but I’m getting used to it…I guess) because that’s how she processes things, chipping away at them and examining them and familiarizing herself with them. She is alternately acting out her own stress and worries (and we’re working together through those feelings and behaviors) and stepping up to help in any way she can.
My sensory sweetie, Renaissance Girl (15), is like a lovely, sweet, emotional barometer. When I’m getting overwhelmed she will often simply feel it without me saying or doing anything, and she’ll quietly ask if I need her to take the smaller ones for a bit so I can have a break. She’s also been making dinner on a regular basis, which, as you’ll know if you’ve followed Little Hearts for any length of time, is a HUGE blessing for me. I haven’t set the kitchen on fire in over a month! ;)
My pre-med guy, Doc (now 20!), is that stalwart rock of a person that everyone needs to have in their lives. He’s preparing for his MCAT’s, working on his medical school application, taking classes to get certified as an EMT so he can work his way through med school, and is working his schedule around helping out with the girls and has arranged time off to go with us when we move temporarily to Jacksonville for my surgery and recovery. The girls are used to being with him at home, so this is greatly easing my mind about how they'll handle me being in the hospital for several days.
My older children are checking in with me frequently to see what they can do to help, rearranging their work schedules to be available during and after my surgery, and pulling together to put in place a plan for my surgery, recovery, and possible treatments afterward.
And, of course, my burly bear of a hubby is being his normal amazing self, offering to talk when he thinks I need to, asking what he can do to make all of this easier, taking the small ones for ice cream and to the park, and simply being the good, kind, and wonderful person that he is.
So, no, I am not all zen about facing surgery and cancer. I am human. I am scared. I am overwhelmed at times. But, I’m using the gentle coping strategies that I normally employ with my children, and I’ve got my incredible family support system, and I have all of your wonderful and supportive thoughts and prayers to help me through.
This I know, I cannot control all of the random happenings of life, but I can control my response to them. This is a hard thing, but not the hardest thing I’ve ever faced. I have survived in the past, and I will survive this…no, I will do more than just survive. I will not only live through cancer…I will continue to live and love and enjoy my life and my family and my work throughout this cancer journey. I think my new motto is going to be ‘I cancerVIVE’ because I can, and I will. (Vive is French for 'to live' or 'live long' and has the connotation of a zest for life, to be full of life, a life well lived)