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.
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.
Being diagnosed with leukemia on top of managing a half dozen chronic medical conditions has made some folks state with a vague indignation:
“That’s not fair.”
And in response, I can only say “no shit.”
Bless them for recognizing it’s too much. Because it IS too much. But the truth – whether you are a believer in Jesus or not – is “too much” is a normal unit of measurement for the bullshittery we must endure in this life.
“It’s not fair” always takes me by surprise. It’s like, Huh. Whats that like…thinking fairness was a viable option in the first place?
I think of things should be fair, of course, and I will try to advocate against the mistreatment of others. But sometimes “others” are not the problem…standard issuehumanity is. Our bodies get busted, our minds get screwy, our spirits falter.
Where one person fights health woes, another might struggle to put food on the table. When one is brokenhearted, another worries about her children constantly. Job troubles, anxiety problems, the list is endless.
If you’re really lucky, you won’t have to contend with all the above simultaneously, but perhaps you have. Or are. I have been all at once before, and I guess it lent me an anxiety-laced sense of a transcendent acceptance (whatever that is. I’ll have to ask my therapist.) Anxious some times, yes – but accepting.
I’m not angry with God, not anymore. , I’ve survived a bunch of really agonizing things, and somehow managed not to pick up a drink in 23 years. And that’s astounding. I never expected sobriety to “stick” for me, and I’m befuddled that it has to this day.
I pretended I had strength, until I did. God and I came to spiritual fisticuffs, and he won when I surrendered. White light meets white flag. Something shifted.
It was confirmed to me during the hard years what I’d known all along – life is not fair, but it’s really good. Even with cancer and alcoholism. There so many beautiful things in this world to appreciate, and beautiful people.
Yes, it’s “too much” sometimes – walking around in achy flesh, on a gravity-bound planet that doesn’t seem to get your vibe. But keep vibing, and so will I.
Occasional freak-outs will 100% happen again; I’m starting to think they have just as much right to be part of our vibe as does our holiest, Jesus-trustin’ selves. You know, for the sake of fairness.
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.
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.
I need to throw a little tantrum right now. Not a full-on nervy-b, but a proper little hissy fit.
I’m so grateful for the health days lately that have allowed me to do some normalsauce stuffs recently, but Ehlers Danlos is a chronic pain and illness condition. It doesn’t take vacations.
My whole body is made up of faulty collagen. The last two nights (and eapecially today,) the pain flares had been almost unbearable.
So here Is my stupid little list of wishes, compiled to get my frustration under control, and maybe remind you that you’re not alone if you’re hurting too.
I wish I could pop my shoulders out of the sockets like Ms. Potato Head, and replace them with sturdier, less excruciating shoulder joints. They pained me so severely last night, I writhed around trying to get comfortable for several hours instead of sleeping.
I wish it didn’t feel like oyster shuckers have been wedged under my kneecaps, feeling like someone is trying to jimmy them off every day. I wish my hips didn’t roll around and sublux levery dadgum day. I can pop the joint in and out, and it’s not a fun party trick. It’s agony.
I wish I had one of those cool new “exoskeleton” robot suits. Have you seen them?? They hold you together from the OUTSIDE. Like a Transformer. I would t even care that I looked like a weirdo.
I wish people disnt give me the stink-eye when I need to park In handicapped. Look at her, walking Into the store! What people dont realize Is that every step can be a real challenge. You never know what a disabled person is really feeling In their bodies. Sometimes the fatigue makes every step seem Impossible.
I wish people’s understood that different days require different mobility aids. Sometimes you will see me using a cane. I need it for stability on Sundays and or because the pain is making it hard to walk other days. I don’t use it at all and I know that seems really confusing, but it’s quite simple – there are good days and bad days.
I live every day fully aware that I will most likely lose mobility from here on out, so the days I don’t need my cane I revel not needing It.
I wish people understood the fragility of an EDSers body, and the strength It takes to keep going. We are fragile, but unbreakable.
There is little to no stability in my joints because most of my lax connective tissue. Pain and injury are the result. I once broke my ankle in two places from stepping out of bed to go pee in the middle of the night; it just rolled. And lest you think I’m just a big wimp about pain, I walked on that ankle for eleven days before I had it looked at by a doctor. My threshold is very high.
I wish I had a decent immune system. I don’t.
I wish the migraines would cease and desist, but they are tied into some of my other genetic mutation conditions. They are a whole other Issue altogether.
And I wish I were way more zen about pain. It teaches me things, true. But I simply get tired of this shit. I am trying to live transcendently – find joy beyond suffering and camp out In the assurance that God’s got me (and I get by with a LOT of help from my friends.)
I currently have a post-it scrawled with medical appointments I need to make on my kitchen counter. Like I NEED to make these appointments – for specialists, physical therapy, another cortisone shot in my knee, major dental work, a trip to Duke next month for gastroperesis treatment, and labs galore. It had been on the counter for weeks and every day I pass it and get a mini-panic attack, on account of I’m simply overwhelmed.
Because this IS overwhelming. My job is to stay healthy enough to have a quality of life, but I sure could use some PTO days to just NOT feel like this.
Life is challenging, but we are never alone. That’s important to wish for – for God to use my crappy conditions to make others feel less alone. That’s the best reason I can come up with for any kind of suffering.
Words by Jana Greene 