I speak up for myself now. Well, sometimes. As long as it doesn’t rock the boat TOO much. As long as the person I have conflict with won’t stop loving me because I’m mad. Only when I’ve rolled the issue OVER and OVER I’m my brain ad nauseam and have decided I’m with a safe person. Only after I’ve played out the worst case scenario in my head, mini-grieved the possible outcomes. And after I speak my peace (because I’ve learned my peace has value, too,) I will fret and worry that I’ve upset someone. Doesn’t matter if it concerns life events or little frustrations, I speak. Even if it’s a whisper, I speak. Even though I know assertion-guilt will try to make me feel like a bad human. I’m starting – with fits and stops – to say when I’ve been hurt or bothered, even though I’ve been a people pleaser all my life. So… No, You cannot talk to me like that. Little Me had no say, but I’m re-parenting her, you see. I’m teaching her things I should have taught my daughters, and must have somehow over the years. They speak up for themselves, without fear of abandonment, because they know they’re safe. And Little Me is safe now too, finding her voice and using it.
Well, it’s been two months since The Diagnosis darkened my door.
The Diagnosis is capitalized, in case you’re wondering, because it’s a proper noun. A name. An entity. An alternative to the “C” word, cancer. Just now, I am still grieving the loss of one of my dearest friends to cancer. People I love very much are fighting it right this minute.
In the last ten months, it has come to call in ways far too intimate for my liking. And I guess I’m mad about it. Because yesterday, I went to therapy. I needed it. I always need it.
The session went well, and I even boasted that I have accepted it now, as if accepting something like that is a one-time deal. Like a harvest moon in eclipse. Or getting “saved” at church.
I should have known better, given my spiritual history. Because once was not enough saving for me at church, and I’d go up to the altar every time there was a call. Week after week, I would try to resolve that tiny piece of doubting, stuck in my soul like a piece of spinach you can’t get out of your teeth after lunch. I was a junkie for getting saved, even though they kept telling me it was a one-time event, no necessary to repeat at every tent revival.
And I suppose there is one tiny piece of me still that vacillates between Ascended Zen Master (as if!), Grandmother Willow-level wisdom (again, ha!), weeping Victorian mourner (I am faint with the swooning!), and crazed badger.
Because I rage-cleaned my shower yesterday, after an already full day of getting things done, after a day that my body implored me to wrap it up already. I decided that I could scrub the entire shower, even though I nearly dislocated my shoulder by putting on my seat belt earlier. Wise Grandmother Willow I am not. And this after telling my therapist (and believing it,) that I’m handling The Diagnosis well now, it’s old hat. Just another chronic condition to manage. That old chestnut! It’s fine. I’m fine. I’m fine. Anger is in the rear-view mirror, I guess! Bye, Felicia! Fast forward a couple of hours; I am home alone with my feelings.
Could a cancer patient do THIS?? *scrub* *scrub* *scrub* for a solid hour. The answer is yes, she can. But she really shouldn’t. At some point, I started crying without realizing it. I was literally awash in water, soap, tears, and snot. Out, damn spot!
The question is: Could a cancer patient do rest? With multiple chronic conditions and zero Zen Master skills? Can she listen to her body without shutting it down for being too high maintenance?
Can she, without constantly cracking a joke about it, let anger have its say about this? Anger, my least favorite of all emotions; the one I suck at expressing the most? Can I accept that it’s a little like getting saved – you think you are, but what about this sin or that that I may have committed? I’d better make sure. And I reckon The Diagnosis deserves the same courtesy of expression that I believed would keep me from burning for all eternity. Oh, you thought you were saved? Better make sure.
Oh, you thought you were done being angry? BETTER MAKE SURE. Better scream into a pillow again. Better listen to some gangsta rap to calm down. Better pray, step up to the altar – that place in myself where God has taken up residence. I don’t have to go far to encounter him.
Better not deny those feelings, because they have every right to be here. The Diagnosis invited them. Maybe I have to entertain them in order to usher them out? I don’t know. I’ve never done any of this before, and like most things my neurosis tries to sell me, I feel like I’m doing it wrong.
But at least my shower is squeaky clean.
Blessed be, friends. Thanks for following my journey.
I had plans to go to the pool at the YWCA today, but about half an hour ago, spiked a sudden fever. So my plans went from swimming to resting. Resting, in case you don’t know, is a very recurrent activity if you are fighting Ehlers Danlos Syndrome OR cancer. With those two conditions onboard, I have to rest so much.
For a couple of years now, I will spike these fevers with no infection, no apparent cause. They’re awful, rising within minutes. We called them my “mystery fevers.”
So finding out six weeks ago that it’s caused by leukemia, it all made sense. Fevers and night sweats mean my body is fighting ever harder. It’s good to know what was causing these, as well as the frequent infections and extreme fatigue. If I pop one fever, I usually pop a few more during the course of the day. BLARGH.
And it’s disheartening that there is no cure for my type of cancer, not even chemo will cure it for good (it can however slow it down some, when it comes time for treatment – and it will.) Might be in 2 years, could be in 15-20. “Twenty years!” you might be thinking, “That’s great!”
Is it, though? If I have to battle fevers, and night sweats, and crippling fatigue for the next 20 years? I am struggling right now. Becaus actually, they both suck. I am admittedly not Miss Merry Sunshine about my chronic illnesses on hard days. It’s the most frustrating thing in the world when you just want to feel decent and enjoy a long, happy life, but a host of chronic conditions put the kibbutz on so many things.
Maybe this explains why on “good days,” when I can do things with my friends and family, or participate in any activities, I am ECSTATIC.
I appreciate good days so much, I take as many pictures as I can on good days, even of little things. Because on days like today, I go back and enjoy those pics, and the memories attached to them, and look forward to having more.
It reminds me that more good days WILL happen. Because there must always be hope. Hope I desperately need.
This isn’t the funniest season of my life, that’s for sure. So my writing hasn’t been the comedy-filled yukk-fest I’d hoped it would be. It’s been absolute clown shoes for a while now, but not in a mirth-making way.
When I decided to start this blog, instead of totally rehabbing my old blog, I did it for reasons that might seem obscure to some. The truth is that I wanted to write more humor; humor about everyday life that perhaps the 2014 version of myself might find in poor taste. I’m kind of into poor taste right now, to be honest.
I wanted to write about being a follower of Christ from here, not from there. I have been “there” most of my entire life, but in this new place, there is curiosity. Questioning. Observing. Laughing. And most of all the thing I’d tried to write about for twenty years but didn’t fully grasp: Grace.
Especially grace toward myself, can I get an AMEN?
“Wouldn’t it be easier to switch up thebeggarsbakery.com, where you have nearly 2,000 followers?” said my husband, who is right-brained and makes actual sense. It can be frustrating to explain total nonsense to a sensical person, because they have logic on their side, and all I have is a handful of glitter and some unrealistic expectations.
“I have new things to say,” said I.
“I know. You’ve just worked so hard to gain your following.”
“And I won’t ‘build my career?” I say. We laugh, because I am not career-driven. I have no competitive nature, absolutely no “drive” or “hustle.” No calling higher than sharing my mind and welcoming the sharings of others’. It’s a crappy career path, but a fulfilling endeavor.
When I was a kid, longing to be a proper writer, I believed I would make a living by writing, which is totes hilar, as my kids used to say. My 10th grade Journalism teacher, Ms. Flowers, wrote in my yearbook, “See you on the Johnny Carson Show one day!”
What an amazing compliment! I hugged the words of that prophesy close to my chest, choking the life into it. I carried it everywhere I went and still do.
Now I know that reference is lost on several generations, but if you are Gen X, that is prime adulation. That’s the pièce de résistance of success. Only the most amazing writers were interviewed by Johnny Carson. Stephen King! Danielle Steel! JUDY BLUME!
As compliment like that from a Journalism teacher? That’s like saying, ‘You’ll win the writing Olympics, Kid!’
Spoiler alert: I did not win the Writing Olympics, because that’s not a thing.
When in my 20’s, I wrote for a small, local paper, crafting community news pieces for 5 cents per word. Do you know how many 5-cent words you must write to put your kid through dance class as a single mom? Or even spring for a few Happy Meals? Many. SO many words.
I then wrote community news for the newspaper in my little city. I was paid the stately sum of $12.50 an hour. This – the pinnacle of my earning – ensured that I made exactly enough every month to contribute one-third of the mortgage payment each month.”
But hold up, y’all. Because THEN, a major magazine (it was 2016, magazines were still a thing; stay with me here) happened across a Beggar’s Bakery blog post I’d written about addiction, and asked if they could pick it up for their issue next month?”
HOLY SHITBALLS, BATMAN! Yes of COURSE you can! Send over the contract! Hurry up before you change your mind, In Recovery Magazine!
The contract was for zero dollars, ya’ll.
But think of the exposure! That’s what they told me. The EXPOSURE!
Now, exposure means you’ll be compensated for your talent, just not today. It means, we see you, Boo….but maybe the next publisher will see you and pay you!But probably not, to be honest, you’ll be a pauper if you try to survive on writing. The odds aren’t really in your favor. But thanks for the free work!
I self-published a couple of little books after that, which ended up costing me hundreds of dollars and making me none. I poured my soul into the first book, my little evangelical soul. I gave countless copies away.
I spoke on recovery in front of large groups of people, which I hated. I know they said the Lord wants me to “stretch” and “grow,” and that public speaking was another way to share the gospel, but I did it with bile rising in my throat and a hankering for a Xanax to get through speaking on recovery.
I now know that God “growing” me by torture is not his bag. But when giving my testimony, I could never wing it. I carefully wrote out every word and read it with all the passion of a kid reading a term paper about state capitals. Not because I wasn’t passionate about it, but because I’m better at bleeding my words than reading my words. Please look away, people. The vulnerability is making me so naked up here.
But see, I’m a prolific writer, if not a successful one. Doesn’t that sound impressive? PROLIFIC. But “prolific” really just means that I write A LOT. Obsessive-compulsively, some might say. Stephen King is a prolific writer. But so is the guy off his meds driven to write a hundred-page manifesto because he is on a mission. “Driven” can mean lots of things!
To me, it means that if I don’t find a home for my thoughts outside of my brain, they’ll stage a coup, and I will be prolifically in a fetal position forever and ever, amen. Since I could hold a crayon, the page has done nicely. It rolls out like a red carpet, welcomes my words, and rehomes the scary ones.
So anyway, thanks for reading my work. Because it affords me connection – with you guys and with myself – and with whatever sanity I have left. Life got heavier with the diagnosis of Chronic Lymphocytic Leukemia in June. I haven’t really yukk-yukked it up in my blog posts lately. But don’t worry, I majored in Writing for Free, but I minored in Gallows Humor. So, I’ll get there.
In a way, pain and cancer and struggle and anxiety are all surmountable, because a kind teacher told my 16-year-old self that she’d be on Johnny Carson one day. Ms. Flowers would want me to write honest and raw. Prolifically. Imagine that. Kind words have power.
In conclusion, life has been humbling. Would you agree? Humbling and not at all what the travel guide promised. But still full of surprises, blessings, and BS.
I hope your dreams land you at the pinnacle of your happiness, hustle be damned. There are more ways than one to “make a living.”
It has easily been the longest summer in my entire life. Punctuated by triggers and glimmers and rolling thunder, it rains almost every afternoon. The day will be sunshiny (albeit, hot!) and from a great distance, you will hear the thunder.
At first, you wonder if the noise was a motorcycle or a garbage truck in the neighborhood over. But if you listen closely, there is the thunder cadence – a low vibration awakened, that you feel in your chest before your ears can confirm its source. And then the building growl roiling over the clouds: Yep, that’s thunder. Again. Here we go.
Nobody wants thunder at the beach. Thunder is a rude affront to the vacationers. It means get out of the pool, pack up your sand buckets. Might as well eat lunch out; the beach requires flexibility. But everyone has the same idea, so every restaurant is crowded and has an annoying wait. The kids are whiny, there’s sand in unmentionable places, you just want your ass in a beach chair, your kids in the pool and out of your hair, and BY DAMN you’re going to enjoy this experience in spite of the thunder and rain. All of this started with a little thunder.
When I received the diagnosis of Chronic Lymphocytic Leukemia on June 13, when the summer was still fat with promise and completely benign. A lot of people freshly diagnosed with cancer describe the new diagnosis as a kind of hurried chaos. “For a while, it was a blur,” is a common sentiment.
But for me, it has not been a blur. It has been a sloth racing a snail and losing. It has been much pacing through my house, wandering aimlessly. It has been too much time on my hands, angry outbursts, crying seshes, and doomscrolling. I am wishing time away, and then chastising myself for wishing time away.
Because I could have 20 years with this cancer, although that’s the exception. I could also have five. Talking openly about the possibilities is therapeutic for me but makes everyone else uncomfortable. I’m not trying to make anyone else uncomfortable, but I’m trying to accept that we all have an expiration date, and if nothing else gets me first, this cancer will. That’s not fatalistic. That’s realistic. Cancer is not the only chronic health issue I deal with, but it’s a doozy.
Nobody wants thunder at the beach. But every day it comes – the realization- a rude affront to all the plans I’ve made for my life. The doctor’s visits mean crowded rooms where people wait, annoyed. I really just want my ass in a beach chair. Summertime means a season of heat and rain, that’s just the nature of the season.
And it occurs to me today that its exactly what depression feels like. I’ll be swimming with my floaties on under clear skies, when I will feel the rumble in my chest. At first, its mostly vibration, but by the time it’s all said and done, there are torrential tears and terrifying cracks of doom. They show up every day, like clockwork, suffocating me with humidity, impossible to ignore.
So, I write. And that helps. I talk to people I love and to the GTOAT (Greatest Therapist of All Time,) and that helps too. I listen to music loud enough to drown out the claps of thunder, and throw paint on a canvas, or fitfully meditate. The practice doesn’t have to be perfect. It just has to be practiced. But Jesus help me.
Please help me with the episodic depression that pops my floaties and sucks me under as soon as I hear thunder. Expect it to visit at least once a day. I can hide like a frightened animal in a storm or do a little rain dance; that’s entirely up to me – triggers, glimmers, and rolling thunder – all. Help me to accept that it’s just the nature of the season, and to keep my joy, all while realizing yep, that’s thunderagain.Here we go…
In the interest of transparency, today sucks a little. I share when I have good days and get gussied up – admittedly those are fewer and further apart. And I share when I’m struggling because I don’t want to pretend I have my shit together for social media. That benefits no one. I don’t. And I won’t. Life is messy (and also great and awful, in turn. So who can give up yet?) But today the fatigue is crushing me, literally feels like a smothering blanket I can’t get out from under. And my pain level is crazytown. People get tired of hearing about my pain, I’m certain. But I’m tired of feeling it. So I spent some time meditating. And some time worshipping. And crying. And that’s the truth. That’s me, pulling myself up by my bootstraps. Leukemia sucks. Ehlers Danlos sucks. I’m tired of physical weakness making me feel less strong as a whole person. It’s just a hell of a day.
I had horrible night sweats last night. Nothing like waking up pained and feeling like you wet the whole bed (I did not, just sweat.) So, I woke up to change my PJs and my sheets and couldn’t manage to go back to sleep. That was the 2-4 a.m. hustle, even before the sun was up.
It reminded me of getting up with my babies when they were little. I would change their diapers and onesies and change their sheets if they had leaked a little. I would calm them with kind, soft words, and cradle them to my breasts for a little feeding. Whatever discomfort they had was soothed. Whatever tiny human need they had was met. Thirst, hunger, general fussiness – all of it within my ability to “fix.”
Then I remember endless nights when they had colic, and I was sleep-deprived and unable to make them feel better instantly. And on those nights, walking the floor, jiggling a fussy baby, I sometimes cried too, right along with them. Little did I know I would cry right along with them all their lives, when colic was replaced by the struggles of growing up.
I didn’t consider that they would develop needs I was helpless to aid in the future, and I certainly didn’t think about my own needs; the ones I would also be unable to manage. I just lived right there in the moment. I’ve been trying to get back to that mindset ever since.
It makes me want to cry now that I cannot soothe myself on mornings like this. I can’t fix leukemia.
I can change my sheets and tell myself kind, soft words, and cradle myself in a hug, even as I am drenched with sweat. I cannot seem to get enough rest, even though I may still have ten or twenty years – CLL is “the leukemia you want to have, if you have to have leukemia.”
But here’s the thing…I do not want to have it at all, please and thank you. It’s kind of the shitty icing on a shitty cake, as I was already battling a myriad of chronic conditions. I cannot imagine what things will be like as this thing progresses over the years. Ten to twenty years of endless night sweats and crippling fatigue? Gee. Thanks, I guess? I’m such a grateful person, in general. So, this journey has got me in all of my feels. Can gratitude and frustration exist at the same time? Lord yes, friend.
In the meantime, I will try to keep my PJs dry and my attitude from tanking, because on days like this, I just want to fahgettaboutit. But I cannot just fahgettaboutit, because I have people who love me, dammit. They still depend on me for less sophomoric troubles. And I have such a wonderful circle of support; people who soothe me like a colicky baby when I want to give up. They know they can’t “fix” it, and I appreciate their trying anyway.
I know this piece would leave one to believe I’m a bitcher and a moaner. But see, I’m also a fighter, even as I cannot feel rested, and I’m flummoxed by the unknown. So, like a one-year-old learning to walk, I put one unsteady foot in front of the other, garnering self-praise when I teeter without falling, and crying when I do fall.
And in this 2-4 a.m. hustle, I will soothe myself and accept the soothing from others, and hopefully grow in the interim, just like a child, y’all. Because just like our children did under our watch, we are all still growing up. And we all live right in the moment, whether we like it or not.
Today it’s raining like God has something fierce, like God has something to get off his chest. A bone to pick with humanity. Not a sprinkle but a torrential downpour, and like everything else right now, it comes hard and heavy.
I don’t know about you, but I’m getting tired of “hard and heavy.” As I sit sipping coffee on the front porch of a little log cabin, I consider society and watching its apparent downfall. And I let my mind play pretend for a bit. I am a pioneer woman, hearty and fulfilled with the simplest of pleasures.
Never mind that there were no Airbnb’s on the “Oregon Trail,” (Blue Ridge highway?) only thoughts of sustenance and probable dysentery. Never mind that I would be long dead if that were the case, because childbirth proved nearly fatal for me bringing my two biological children into the world. I come from weak, generic- European stock. We are sickly, pale, and given to dying in childbirth.
But I consider my surroundings as if it were 1847 and I had arrived here by hiking on sturdy legs and enduring hardship, not by Honda Insight. There are berries in these woods probably, and the soil would be fertile for growing vegetables. There are deer for venison (I’m certainly not hunting and killing it – I’ll leave that to the menfolk) and other rodent-based meat – squirrel and rabbit, which I’m also not killing, but would eat if there was no Chick-fil-A nearby.
This is my first vacation since receiving a Chronic Lymphocytic Leukemia diagnosis. It’s good medicine to sit in the woods and contemplate your fate, it turns out. I walk barefoot on the dewey grass. I hug the big oak tree that shades the cabin and thank it for its shade. I listen to Teddy Swims and old Van Morrison on the cabin porch, rocking and blissed out.
I literally stood outside in the pouring rain with my face skyward with the intention of screaming into the void, but ended up thanking him for showing up and washing away my attitude with his tears.
The air is God-breathed, my ears are filled with birdsong. And even though is it’s pouring rain; I am glad for it. I watch the clouds tuck the mountains in goodnight. I love a good tucking-in.
I think this property was a Christmas tree farm at some point. Frasier Firs line the property. I guess we were all something else at one time or another. Each phase subject to its own rejoicing; each phase subject to hardness and heaviness. I reckon the land groaned as it weathered changes, just as I do now.
Every journey we find ourselves on – whether involuntary or self-led – is too much at some point. Things are a little too much now. So I groan. Oh how I groan. Oy vey!
We are home from our long weekend getaway now. I’m trying to carry some of the contentment that came so easy in the mountains into today. Nature made an investment in me during he course of our mini-vacay, and I’m trying not to squander the peace it gifted me.
Turn off the news and quiet the weeping and gnashing of teeth long enough to remember that God is close to the broken-hearted.
I am sick, but I am surrounded by love – even in the suburbs where the air does not carry the scent of God’s breath. Even when I’m spiking a fever at the least opportune times, or angsty about the state of the world.
Pain is a constant companion, but I’ve found it is more effective to run a three-legged race with it than to deny it altogether.
It is a part of me, and hating it ultimately ends in hating myself. So, I walk with it daily, with it. Running with it ends up tripping me up. Go one day at a time – the same way I got through getting sober.
Now that I think of it, perhaps pain is like my conjoined twin; one that dislikes all the things I love. We have to compromise, or nothing gets done. At any rate, it’s here to stay, and that can be the hardest, heaviest thing of all. This might sound defeatist, but it’s just acceptance. And as long as there is still nature and hugs and the Spirit of God, I can accept it with some measure of grace. Even as this land groans.
I hope your hard and heavy era passes soon, and you can find some peace in this crazy world.
Yesterday was a very, very good day. It had been exactly a month since my diagnosis of Chronic Lymphocytic Leukemia, and my husband and I met with my oncologist to get staged and get a prognosis, after a battery of tests.
I am stage ZERO! CLL begins with stage zero, unlike most other cancers. Unfortunately, that doesn’t mean I don’t have cancer – it just means that it’s in my marrow and blood but hasn’t spread anywhere else. My bone marrow biopsy confirmed that I definitely do have CLL, but the PET scan was clear!
My prognosis is good! We wait and watch now. I will go to the cancer center every three months forever to monitor my white cell blood count, lymphocytes, and web blood cells. But until my WBC doubles within a span of six months or I start to have lymph node problems, I am treatment free.
Will I need it someday? Most likely yes. CLL never entirely goes away. But I’m already on the one day at a time plan with my other chronic illnesses, I manage the POTs, Ehlers Danlos Syndrome, and about another half dozen chronic conditions.
Life is crazy, man. Yesterday morning I was praying for the diagnosis of CLL rather than ALL – chronic vs. acute. Chronic has to be managed, acute is trouble. Funny that a month and a day ago, I would never been so flippin’ happy that I have any kind of cancer. Now I’m praising God that it is not acute, or do I require any treatment right now.
I didn’t need another major health concern, but I feel like my training wheels are off in this regard. I already live illness every day. And whatever this brings, I intend to rise to the occasion. Probably while doing a lot of bitching now and then, and maybe some crying, and a whole other layer of frustration…
But I’m pretty scrappy.
Thank you for all of you who have been praying for me. It is truly the best case scenario. I love my medical team and I’m so grateful for them as well.
Tomorrow I will find out what stage my Chronic Lymphocytic Leukemia, as well as my prognosis. Sunday, I had a little nervous breakdown – nothing that would send me to a grippy-sock vacation, but enough that I purged three weeks’ worth of tears in one flail swoop. I really let it out, which ended up being a good thing, even though I tried to resist The Big Cry up until then. I was afraid if I started, I wouldn’t be able to stop. And I was right – I didn’t stop for hours. But eventually I did, if only because I exhausted myself.
Monday, I felt a little better.
Tuesday, my nerves started gearing up again.
And today – Wednesday – I have been up since 2 a.m. doing “research.”
Now “research” by a person such as myself, means obsessing over whatever the Internet says my results are. The internet gives only two types of medical information – the shit that paints a gloomy picture, and the shit that is so clinically detailed, nobody outside of medical school would understand it.
I have berated myself on a number of occasions because I like to think I’m intelligent(ish,) but I cannot follow the concepts that keep the human body going. There are too many numbers, symbols, letters, reactions, tests, and charts. I was lost at line 1 of every article I read.
I am not medical-school smart, obviously. I am an empath who can micro-read the slight variations in a tone of voice, miniscule body language movement, even a “vibe.”
A genius at vibing, which frankly has never paid the bills or helped me read a medical report. I can string words together pretty well – words are my art medium. I can understand some abstract concepts, but I am lost right now. And my brain has only one useful thing to say in all of this drama, which is – unhelpfully – worry. How many times do I have to surrender? Meditate. Go inward, Self. And for cripe’s sake, you failed 10th grade Algebra, so maybe stop trying to make sense of flow symmetry and lab results.
My head is a jumble already, what with a crash-course introduction to CLL Genetic markers? I’ve learned what some of them mean. Flow Symmetry tests? Pure sci-fi. Bone marrow biopsies? Not as bad as a spinal tap, but certainly no fun. PET scans? Makes you radioactive and entails a lot of waiting around.
But I have also learned that mine is a typically slow-growing cancer and is rarely diagnosed in someone under 60. Many people live years (being closely medically monitored) and there are treatments that typically help extend the life. I keep telling myself it’s “no big deal.”
That I already contend with chronic pain and illness on the daily, I’m frustrated with this additional issue. So, daily I find myself fluctuating between telling myself to stop being such a baby, and equal parts Oh my GOD. (And yes, I recognize that there are much worse cancers, much worse conditions out there … this is just my brain trying to hammer my feelings out of my noggin and onto a page, where it is much easier to reason with!)
The not-knowing is awful. I will be happy to close out my “research” study, after the appointment tomorrow. Knowlege is power (for real for real) and I guess that’s why I feel like a puny weakling right now, especially mentally. But ONWARD AND UPWARD. I am actively seeking “glimmers.”
“Glimmers” are simply the opposites of “triggers.”
I can focus on being triggered, and there will be plenty of reasons to be. The triggers that, well…trigger me. LIke: I am legitimately phobic of hospitals. The very word “cancer” trips me up. Thinking of how all of this will ultimately affect my family – HUGE trigger. How much is this going to run us, financially? Feeling like I was already sick, so what the actual HELL? There’s a little justifiable anger there, if I’m being honest. The pokes and prodding. The waiting rooms. The smell of antiseptic. Germs. Upended plans. Good old fashioned sadness.
Next, I think I’ll write about glimmers, and end today’s writing sesh with some positivity.
Got through the PET scan yesterday. Thank you all for sweet thoughts and prayers. It went “fine,” whatever that is. Except for once I was strapped on the table, I started crying. Fat, rolling tears came, en masse. And I had nothing to disassociate with. I wanted to grab my phone, or a TV remote, or a book, or ANYTHING. But my arms were strapped down to my side, so there was nowhere for any of it to go, no way to stuff it. So, as I traveled inch-by-inch through a giant mechanical donut (not nearly as bad as an MRI – look at the positive! – tears just rolled down my face for 45 minutes.
I would have given my kingdom for a single meme. Alas, it was just me and God in that machine, and it became clear to me that I am really sick.
What a time to snap out of denial, eh? Until now, I’ve thought of all the tests as just a “maybe I have cancer. Or maybe they’re wrong!” Even though an oncologist told me I did. Even though the biopsy confirmed it. They just have to do all these tests to rule it out, I kept telling myself.
Except they do not do bone marrow biopsies and PET scans for the hell of it. So, in the PET scanner, radioisotope coursing through my body, I accepted it. I cried the whole damn time and just FELT it. I was literally a human burrito, wrapped tight and constrained. I was reminded that this is why I made such a great candidate for alcoholism. Numb the BADFEELS.
After my childhood trauma and the series of unfortunate events in my life that followed, I just didn’t want to feel for the longest time. That was 23 years ago though and I know better now.
My sobriety is secure, and I’m grateful for that. It is only secure for today, because that’s how this thing works no matter how much sober time you have. But I’ve found my rusty recovery “toolbox” recently and it turns out that the tools are still in pristine order; it’s just the container that’s a little corroded and aged (hey! Just like my body!) I am daily remembering to keep my tools in working order – reaching out to friends. Spending time in meditation and prayer. Strengthening my soul. Keeping my mind busy. Practicing extreme gratitude.
But damn, y’all. I was already sick. There were already days that it was too much, just too much. So maybe the next step is anger, I don’t know. I suspect there is overlap in the stages of grief.
Anyway, one more test down; next up is meeting with my oncologist about staging the cancer , giving a prognosis, and planning treatment. Chronic Lymphocytic Leukemia is forever – the only cancer that never truly leaves your body. But the best-case scenario would be that he takes a “wait and watch” approach. I will have to get labs every three months for the rest of my life; to monitor it, and take action when the sea of letters and numbers and markers and God-only-knows-what-else indicates treatment. But I am symptomatic, so it will not surprise me if I need chemo. That’s the crappy thing right now – that I have no idea.
So I’ll break out another tool, which is trust. Trust that the Universe has my best interest in mind, and that may not look like physical healing. I learned a long time ago that everything is indeed not healed in the name of Jesus – in this Realm. I would rather have a healed Spirit than a healed body, and for many years, “name it and claim it” damaged me far more than being sick. Casting “demons” out of sick people is incredibly damaging. As is “you are already healed in Jesus NAME!” Really? Because I am still physically hurting. Stop it. Just stop telling people that it’s their lack of faith that is keeping them from getting healed; all it does is create spiritual orphans out of people who are already suffering. I’ll get my healing. Eventually, but maybe not here. And that’s not lack of faith. Child, if I lacked FAITH, I wouldn’t have bothered to stick around this janky planet, in this janky body.
I’m real sorry my chronic, debilitating illness makes your faith messy. People get well. They also stay sick. And sometimes they leave us. And I’m pretty sure Jesus understands that. Don’t insult my faith. I have been through more and trials infirmary in my life than you can shake a crucifix at. God and I are well, thank you.
I digress though. What was I talking about? Oh yeah, letting the emotions flow. Because they aren’t going away on their own either; feelings are meant to be felt! Even the yucky ones.
Well, Dear Reader, things are trucking right along. A few days ago, I went to the hospital for my bone marrow biopsy – which was not quite as bad as it sounds.Almost, but not quite. Definitely no fun whatsoever, but as it turns out, I’m tougher than I’ve given myself credit for all these years. I straight-up felt like a badass, if that badass was scared shitless and masking the hell out of it, so as not to upset those around me worried about me.
And I don’t know how NOT to do that – mask for the sake of everyone around me. I can’t upset my husband. He is literally the best thing that has ever happened to me – my heart. I have to be brave for my daughters. They are processing in their own ways. And my readers – most of whom followed me from The Beggars Bakery – have watched me amass almost 24 years alcohol-free and they watch my recovery.
In recovery circles, you become very aware that people are watching you, seeing how you handle adversity and whatnot. I took on that mantle like a good People Pleaser, each year giving my testimony – every year, louder cheering when I would pick up my annual chip, but I hated the public speaking and fought nerves every meeting I ever shared at.
Frankly, I am cheering myself right now for staying sober, because F*CK! This is really hard.
But I’m kind of watching myself, being critical in a way I never was with anyone else’s tender heart, and why do I do that? Do better. Be more positive. God has a plan. Yadda yadda. Ugh. Beating myself over the head with toxic positivity because I know how to be toxically positive and laugh at every situation, but I don’t know how to do THIS.
Am I tough, or am I masking? Am I brave, or am I am I pretending? After all the scans and biopsies and scary medical stuff, I feel tougher. But I also feel rawer, tender in parts of my spirit – the pure and the shadowy – I didn’t know existed.
I was alright until I shuffled into the CAT scan room, so that they could guide the needle through my hip bone, into my marrow, suck out some of it, and punch a little piece of bone for biopsy as well. Because of a series of unfortunate events, I was by myself. Also I didn’t think anyone would be allowed back with me, but the waiting room had another waiting room someone could have been there in with me. But no. Just me and my thoughts, avalanching into numbness.
The team of three taking care of me were amazing – I could not have asked for gentler, more calming medical professionals – tried to put me at ease. But when I looked around, I saw the implements of the procedure, and had an internal freak-out. All I could think of was the Showtime series “Dexter,” which my husband and I LOVE and are currently bingeing. Drills! Sharp things! Syringes! Lord, Dexter would LOVE this set-up! I laugh to myself, then realize I’m just deflecting with humor again, a skill I hones early. Not that Dexter is funny – it’s just the lengths my brain will go to avoid feeling fear is ridiculous. I fought the fear to jump off the table and run…as if the joints in my legs would let me run further than the door.
“Okay, we are inserting the needle,” said the radiologist (forgive me if I mess up on the official job titles. I have seen a dizzying array of medical professionals in the past three weeks and it’s hard to keep them straight.) They had numbed me with lidocaine and put a little somethin-somethin’ in my IV for the pain. I could still feel it to some degree; I am very difficult to anesthetize. I feel EVERYTHING, mind, body, and soul.
The kindly PA explained that they were entered the bone. What a strange, awful sensation. Needles don’t belong there. But by the same token, I am so grateful that science allows them to help me in every way they can, and I say a quick praise for them. Then they said they were taking the marrow now “….almost there, almost there, almosttttt….” and I yelped because I could feel pain and pulling. Next was the bone punch. Mother of GOD.
Go to your happy place, I said to myself….that little house in Wimberley, Texas, with a stream out back as clear as bathwater, and full of little fishes. The grass is damp and glossy because it’s morning. There are bluebonnets, of course. And I see a sly little water moccasin swimming upstream a bit. I am not scared at all, just give him a nod as he slithers on his merry way – he belongs here too.We ALL belong, in my happy place. Van Morrison is playing in the little house up the hill. I am eating s bowl of Blue Bell Banana Puddin’ ice cream, while I dangle my bare toes in the clear water. Ahhh, so cool. It smells like Texas here. It smells like home. It is beautiful weather, not at all hot. And the creek is making tinkle noises, and I look up to see my husband, smiling, and…
“You’re a rock star!” the Tech said, bringing me back.
“You did SO good!” “You’re so BRAVE.” “Treat yourself to something special today!”
These are all things I said to my kids when I was potty-training them, and with the same inflection. And I was not mad about it, nor did I feel patronized. Dammit, I received every kudo. Talk sweet to me. Tell me I did a good job. (A sticker on my forehead, please?) Every comforting word was exactly what I needed to hear as a scared little girl whose screams went unanswered.
In case you are wondering, I did treat myself to something following my marrow biopsy. Something decadent and extravagant. Something I have been denying myself forever, because GOSH DAMN, it’s so expensive. It costed me much, but rewarded me more.
I had myself a big old cry. I let myself be sad about all this. I didn’t tell myself to get it together. Me alone with my thoughts – we all cried. And then we felt a little better. Until we felt sad again. And then hopeful. And then just raw. But it’s okay, not everything needs to be anesthetized. Maybe I can even cheer for a myself, for a change. Atta girl! This is still my “testimony,” and we shall see how I handle adversity and whatnot. I suspect it will be a mixed bag.
This is hard. Writing helps. Thank you for sharing this journey with me.
Three weeks ago, I received my diagnosis of chronic lymphocytic leukemia. It’s been a weird time, to say the least. I still can’t believe I am typing the word cancer as relates to myself, because I’ve often thought, gee….I have a lot of medical problems but at least it’s not cancer!
And life – for the thousandth time – said THAT’S WHAT YOU THINK!
A few surprising things are resulting from my utter shock. For the first week, I don’t think I used the “C” word (no not that one, don’t be gross.) I called it “the illness.” Sick.” But I am finding that calling it out by name – cancer – takes just the tiniest, miniscule crumb of scariness out of it, even though I’ve seen what it can do and have respect for the illness. Acknowledging the name of the thing you’re fighting helps the fight-iness, I think. I am not apt to tolerate elephants in living rooms anymore, but face it and comfort it, if need be. But see it…really see it.
A dear friend of mine told me yesterday to stop calling it “my” cancer. “It’s OUR cancer,” she said, which made my eyes well up. I don’t want to bring my friends and family infirmary and sadness. I want to bring them joy and laughter. Alas, like everything else in life, it’s not “or” but “and.” It isn’t joy OR sadness. It is both, and there is nothing I can do about that.
So even though this is completely out of my control – as are all of my conditions – I’m trying to temper the rushing guilt of bringing everyone down that comes in waves. Our sweet tribe – our closest of friends – lost someone to cancer, only seven short months ago. We are family, in all the most genuine of ways. We are all still reeling and broken, trying to figure out how to live in a world she no longer inhabits physically. (Notice I said “physically.” I feel her spirit every single day, and I know she comforts and encourages me now.) Hers was “our” cancer too. Because none of us live in a vacuum, nor would we want to. It was an honor for her to let us walk her home. I hope I am half as brave, ballsy, and beautiful as she, in coping with this journey.
Perhaps this is not a wilderness experience. Maybe it’s not survival-“Naked and Afraid”-style – when one person has tapped out, and the lone contestant braves the wild. Truthfully, there are traumatized parts of me – parts left of the little girl in me left to fend for herself when I was helpless – that is fighting the urge to run. Run where, I do not know. I’m not a runner. But if I disappeared into the ethers, just *POOF!* it would not make anything easier for the people who love me. It’s a dumb thought born of “flee, fight, fawn,” which I very much needed to hone as a child but does not serve me now.
But I surely do feel Naked and Afraid – raw, vulnerable, exposed, frightened. All of it tinged with guilt about dragging other contestants into a jungle they didn’t even sign up to brave.
If you’ve ever watched the Discovery Channel show, the participants are supposed to be given ONE item to help us survive. A machete. A tin cup. A fishing hook. SOMETHING.
WHERE IS OUR ONE ITEM, FOR CRIPE’S SAKE??
And then it comes to me – we are equipped. With just one survival item – it’s all we get.
Love.
See, the undamaged parts of me have a knowing – we are given one item, and only one that matters. It’s not a weapon. It cannot be stolen, used against us, or bartered.
Love keeps me from tapping out. Love keeps me from running. And love will be the key to my survival – to OUR survival. It’s all we take with us. It’s all we are born with and die with. It is everything.
If I had a dime for every time I have heard this scripture in the church -telling me I’m “already well,” I would be a kajilionaire. And the words are said with love and good intention, and belief that “healed” means bopping up out of a wheelchair INSTANTLY.
I can only say so much about the subject, because I have been both a victim and a perpetrator of “faith healing.” Again, with all the best intentions. But much damage was done to my spirit on the road to heal my body. And with my intentions, I had probably given someone false hope. You feel spiritually orphaned when you stay ill.
“You’re already healed, you just don’t know it!” they told me, when walking was torment and the joint pain excruciating. Oh, thought I. I must have some flaw that keeps me from receiving. And as I got sicker, I felt like a disappointment to all who were so fervently praying for me.
Perhaps it’s the “demon of infirmary, which is a little trickier to toss, but don’t despair, Beloved! “The Word is a weapon, and we will command the enemy to leave your flesh!” Only it felt like I myself was being “cast out,” because I wouldn’t get well. I took it personally, and it seemed like they did too.
Still sick? *sigh* “Well, have you thought maybe you have a secret SIN? Everybody has secrets, but Jesus loves you anyway HALLELUJIA? and he knows your heart. Confess unto him, and you will be well! (Why does everything revolve around SIN in the church? Frankly, a God who can heal you but just won’t is not the same God I was taught was love.
I was told at one service by the pastor, “The metal in your leg from the injury has TURNED TO BONE! Get an x-ray, and you’ll see!” Faith healing seems Biblical, so to it we cleave.
Now, I consider myself reasonably intelligent. I get by. But brethren, I believed it. Because, well… cult reasons, honestly. I had invested my whole life in this system in which any disability they can’t hibbity-jibbity out of me in reasonable amount of time (or at all!) was a defect of the strength of my belief. I am a rabid people pleaser (working on that) so disappointing the clergy was of utmost concern.
I love the late Carrie Fisher, herself no stranger to things like addiction, depression, illness and the like. My favorite quote from her is, “Instant gratification takes too long.”
INSTANT GRATIFICATION TAKES TOO LONG. And maybe that’s why our faith is so impatient, so spiritually entitled. We are taught that we don’t deserve to be healed really, but it’s our birthright, so God has to do it. (Spoiler alert: God doesn’t have to do squat but love us and teach us to love in return.
Here’s the corker though, I think – and it’s kind of a piss-off here Earthside: I think we will all be ultimately healed. But we’ve just taken the healings that Jesus did as miracles when he was Earthside and assumed that same healing is for every person.
But on the physical plane, that may not be so. These are meat-suits, and they are temporary and bockity as all Hell. Creaky, apt to damage, prone to wear and tear. Several features do not work. The Church told me I bought the warranty, but if so, the warranty company ghosted me (I tried not to type, “but not the HOLY GHOST,” because she hasn’t gone anywhere…)
I believe our pain pains God – which I still think is true. But that logically deduces that there will be pain. And I wonder how much being a sickly kid emersed in an environment that tells me I am inherently bad dinged up my psyche. To add to that, I lived in an echo chamber as an adult, where nobody would admit seeing the emperor had NO CLOTHES, because they all believed like I did.
Maybe I’ll get that physical healing this side of eternity. God, I hope so. Science is making huge strides! I will welcome it. Western medicine, Eastern medicine, prayer, meditation, and breathwork? I’m going to throw EVERYTHING I can at this illness. I don’t think God faults me for it, either. I will keep praying for healing. But I will also not make the physical my god. I begged a seemingly aloof god to make me well. What I got is an incredibly compassionate God who inhabits this body with me. And sometimes that has to be sufficient, like his grace.
To pretend that we are all entitled to be able-bodied and expect such does our fellow humans a great disservice. It’s just another method of setting others apart in the name of God. But there is no separation. Your pain is my pain, too.
I think in a way, I did get my healing. And it was different from what I was told to expect. It didn’t come with tossing my walking cane to the side and doing a jig. It didn’t come as relief for my chronic, unrelenting pain, to be honest. And that bummed me out for a long time and kept me from healing on the inside.
But I did heal on the inside – I am still healing every single day, from the ‘inside.’
We are not ghosted by our birthrights. We are made of stardust and God-spit, with whatever infirmary becomes our new normal is a surface just a ding in the paint. It’ll buff right out. Meanwhile, beloveds, take gentle, loving care of yourselves. Body, mind, and especially Spirit.
Okay this is the proof I got out of my actual pajamas yesterday, if only for an hour.
By: JANA GREENE
Hi. In the interest of journalistic integrity (haha), I feel like adding a disclaimer of some kind to the entries I’m going to be adding in Words by Jana Greene. Because I’m a writer, I like stories to have a clear beginning, middle, and end. I like when I can weave the narrative in clever ways or end up with a cohesive piece.
Yeah, this is NOT that.
When writing about this journey in particular, I am writing stream-of-consciousness-style, and if you don’t want to read me because this page may be full of incorrectly punctuated, rambling, seemingly random words, I get it Sis. I am not over-editing, because that breaks the intention of sharing my heart and makes it sort-of clinical in a way. I’m going to get plenty of “clinical;” this is the opposite, I think.
Yesterday, I had a rollicking good afternoon. Weirdly good. I put on a dress, asked my husband if we could go to dinner. I’m so tired of having cancer-ese language in my head.
I did my makeup, which happens with the relative frequency of a solar eclipse, and my hair – which is very long and very thick, and EXAUSTING to my hypermobile shoulders. And THEN – after alllll that – I look him dead in the eye. “Baby, I’ve used every ounce of my energy getting ready. I’m exhausted.”
“It’s okay,” says he. “Want to order in wings and binge-watch Dexter?” GOD, I LOVE THAT MAN.
So, lickity-split, I changed back into my “Agape Against the Machine” oversized t-shirt, ordered food, washed off every bit of makeup, plopped on the couch with my beloved, and ate chicken wings King-Henry-the-Eighth style in a MOST unladylike fashion with what little energy I had left.
The energy of a sick person is finite. And some days, it is more finite than others. “But you just DID it,” they say. “Yes!” say I. “And that’s why I can’t do it again!”
Doling it out over the course of the day must be deliberate. We don’t just “do things,” we do things that deplete our body’s energy ration in parcels. The parcels are not of our choosing, even. We wake up, take stock of pain, and – if our pain to exhaustion ratio is high, goals for the day get voted off the island until you are left with one crappy thing to do that isn’t even fun. Disabled bodies are utilitarian, and have no time for frivolity, on low-energy, high-pain days.
The ante was significantly upped with the cancer diagnosis June 13.
Tomorrow morning, I go for an invasive bone marrow test, which by all accounts SUCKS. I feel like up until now, I’ve been pretty accepting of my diagnosis and kind of positive about all this, but I ain’t feeling brave this morning. Fight, Flight, and Fawn all have seats at my breakfast table right now, and they look a hot mess.
So, today, I interrupt my own sometimes-toxic positivity with a special news bulletin:
I’m scared.
For the first time since the diagnosis, I am legitimately scared. I don’t know what triggered the fear (having cancer, probably – ha) but as tomorrow’s test looms, I’ve decided NO THANK YOU PLEASE, I don’t want to do this cancer thing. But thanks for the offer, I already have a full schedule full of trying to stay alive. I already gave at the office. Dance card is full.I have prior engagements. But thanks for stopping by!
But that’s not reality, so I just need to be able to say, “I’m f*cking terrified.”
When a disabled person gets cancer, there are “people of the Lord” who assume God’s got it OUT for me. Why else would he “allow” all of this? Or this secular quip: “You’re the unluckiest person I know.”
But I don’t feel unlucky. I am surrounded by light and support and love. I just feel scared today, with a chance of intermittent sadness. Not strong. Not perky and upbeat. Just run-of-the-mill scared. I feel both: Scared AND lucky to have such an amazing tribe helping me make it through.
So I’ll shut this laptop, and light some candles, and get into a quiet spot, and breathe deliberately. I might take out my tongue drum and play some tones, focusing on each one as it completes its own life cycle of vibration, letting the sound take my fear down a buttonhole. Light some sage, let it’s perfume reassure me. Pray honest. Do some breathwork. Maybe I’ll get into the paints and make a mess today. Talk to God, and listen for his answer back, which can come in a myriad of ways – you just have to have the awareness to hear it. (Just ask for greater awareness of the Divine. God wants us to have the peace that passes understanding. He is not stingy with it! Don’t believe me? God lit in the forest by yourself for a while and receive. I highly recommend.
These are some of my tools to treat the fear when it comes. I acknowledge it, thank it for trying to protect me, but busy myself in art and music until it can stop actin’ a fool. And perhaps in the coming weeks, I will have another energy burst and put on the little black dress again, and actually make it out the front door! Maybe get all the way to a nice restaurant, where I’ll be able to stay awake, digest food like a normal person, and have a whole-ass date, start to finish. My husband deserves that – and so much more.
Pop-up fevers for no apparent reason? Check. Waking up at night drenched with sweat, when you are years beyond menopause (hysterectomy 2008) … Check. Crippling fatigue? Check. Covered in bruises? CHECK. Shortness of breath? Sometimes. Totally crappy immune function… bad luck or cancer?
Now these are all things that could have a different cause than my Chronic Lymphocytic Leukemia. Having been diagnosed less than two weeks ago, it makes me wonder though. It explains SO MUCH. But I have had symptoms for a long time, and have multiple issues that make me medically fragile.
Could be a Mast Cell attack (a comorbidity of Ehlers Danlos Syndrome) causing the fevers. Drenching sweat could be a menopause relapse or something, but since my ovaries left the building in 2008 when I had my hysterectomy, I know it’s not. Fatigue and easy bruising could be my Postural Tachycardia Syndrome (or result from my own clumsiness.) Shortness of breath could be run-of-the-mill anxiety, which has constant since the diagnosis – sometimes holding my hand lightly like a lover basking in familiarity (oh HI, Anxiety! I know YOU); sometimes squeezing so tight, like an anaconda is strangling my nervous system
Here’s the thing – I’m in the weird place right now. I am carrying malignant cells in my blood, but I have no idea if the cells are sleeping and dormant for now or having a full-on rave going on in my body, techno music blaring, glowsticks swinging, chaos ruling.
I have an upcoming, invasive medical tests and scan. I don’t know whether the scan will show no spread yet (and thus be Stage 0 – which means no symptoms but cancer in the blood/marrow, the best case scenario – as it requires only “wait and watch” approach); or my body could light up like a Christmas tree and require treatment right now. I don’t know. And the not knowing is hard, no?
But God is providing so much grace to me and surrounding me with support. So, either way, I’m keeping the faith, and holding on to a hearty helping of dark humor. I have always found those two to be essential to getting through tough spots. I will find a damn way to laugh about things, y’all. Humor is to my comfort in a storm what a safe harbor is to a boat. And I know God walks with me through all of it, holding my hand just right.
Thank you for taking the time to read this and follow my journey. Everything is called a “journey” these days – probably because everything IS a journey – but this is one not too many people want to be a part of. I write to process and believe that going through something hard without sharing the experience is a waste of a terrible era. Others need to know sickness and calamity are part of life, just as much as promotions and clean bills of health. We have plenty of people pretending everything is FINE, when clearly *gestures wildly* it is not. Healthy people make being healthy SO EASY. Some of them just roll out of bed each day with zero pain. What’s THAT like?
Send me your warm fuzzies, good vibies, and petitioning God for a good outcome today?
Having the skin cancer on my leg removed via MOHs surgery. Completely separate and unrelated to my leukemia, because, um…go big or go home, I guess? (*shrugs and cries simultaneously whilst rocking in fetal position, then gets up and deals with it because THEM’S THE BREAKS KID!*)
They biopsy around the legion (original legion has been removed) to get the margins and have a lab onsite to test each layer for malignancy, leaving the would open as they keep excising around it, until all cancerous cells are gone. It can take hours and hours.
It’s really not that big of a deal, especially with everyone else I’m having to contend with right now, health-wise. But I could do without the aggravation. But we all know aggravation is crappy at taking its turn, always rudely infringing on us at the least opportune times.
If you’re keeping up with my journey (I don’t know that it’s a journey solely about physical health (is it ever? we are not just our bodies, where our minds and souls live. Healing has to be a full-participation thing – and I’m going to be working on my spirit, mind, and emotional well-being with every bit as much fervor as I’m going to put into my physical self.
Words by Jana Greene 