A(nother) New Chapter

Guess what? We are still here! Adam met with his doctor at Clearview Cancer Institute today for a routine check, and it was indeed routine. Thank you God!!! Last Friday February 28th marked two years from his initial diagnosis, and this Sunday marks the second anniversary of the surgery that officially changed all of our lives. That was just the beginning of the hardest year of life so far – it’s a chapter that never fully ends but does get overshadowed at times by the newer ones. Again, thank you God! I keep thinking about where we were then and where we are now. I often get discouraged by where we still aren’t, but then I remember….

A son who hated to leave the house and could barely tolerate the presence of anyone besides his immediate family still values his privacy and doesn’t want to be mentioned at all on my blog. A daughter who was terrified that her dad would die or that her parents would divorce (we’re still not sure why that was a fear – it was never a concern for us…). A husband who was barely there in any manner but the physical and who was always sick or in pain, not to mention roughly 15 mentally. Have I told you about the time he said that it wasn’t that he wasn’t listening to me, it was just that he didn’t care what I said? No? He did. Word for word. Out loud. Chemo brain is a thing. I didn’t consider divorce, but I wasn’t sure who exactly the guy in my house was. And I didn’t like him. And me? I worked at the after school program at our church and kept all the balls in the air as best as I could. I didn’t sleep or eat well, and I cried and yelled way too easily. That was 2013, and actually a good part of 2014. Did I mention that it wasn’t much fun?

When the school year ended last May, Adam was on daily medication for neuropathy, a side-effect of chemo, as well as being dependent on medical supplies for his digestive issues; one kid was on a pill for seasonal allergies that had always been a problem; one kid was using an inhaler semi-regularly for her newly diagnosed asthma; and I was on one daily medication for stress- and hormone-induced acne and another for acid reflux. When school started back and I was still crying and yelling too much, I went to see my doctor. She listened to me spew my worry about my kids’ mental health and Adam’s mental health and all the things and people I was worried and stressed about and then…then she did something amazing: she looked me in the eye and asked why I didn’t do something about the only person’s mental health that I could actually change. Yep. Mine. So we added another daily medication and counseling to my life. And something amazing happened. I was re-introduced to this person I used to know. Her name is Lydia and she had been missing for a long time, at least off and on. At about the same time, Adam hit the first anniversary of the end of chemo. Yay!!! And not so yay: that basically meant that any remaining side-effects were likely permanent. In Adam’s case, he is in for a lifetime of peripheral neuropathy (numbness in his hands and feet) which is exacerbated by cold weather and by being on his feet a lot. He is on medication to treat the symptoms, but the condition is persistent. So yay. And ugh. We are doing better physically and mentally, but we are still dealing with a lot and we are on lots of medicine.

Meanwhile, the whole world is going crazy over the latest, newest, most natural, most traditional way of improving wellness: essential oils. I’ll be honest. It was hard to be told by well-meaning friends or family that we should eat better / drink this thing / exercise this way / try this new treatment / eschew western medicine while Adam was faithfully slogging through the hell that is chemo. It was impossible to contemplate that chemo was a bad decision because it was such a horribly difficult one. I know no advice was meant to call his decision into question, but when everything is hard…EVERYTHING is hard. So while we were not theoretically opposed to trying alternatives to western meds, we weren’t in a big hurry to actually get into it. Until September of last year.

A friend from our seminary days had been commenting on facebook for a few months about the amazing results she’d seen in her family, and Hey! in September, there was this group online that she could add me to if I just wanted to learn a little about what oils can do. So I joined the group, tried to win some giveaways, and asked a lot of questions. Allergies? There’s a oil for that! That one works especially well for us – Private Son takes almost no allergy meds these days, for the first time since he was 2, and Adam swears by it. Depression and anxiety? Yup! (I use several of those, but still like my anti-depressant too.) Headaches? Another I use in conjunction with other meds – to great effect! Weight loss? Trying…. Acne? I have a whole new skin care system, and I think it’s really helping…. Pain? Numbness? Nerve damage? Focus? Anger? Hair growth? Lice? Yes, yes, yes, yes, and yes. Okay. At that point, I was torn between wondering if these people were crazy pot-smoking hippies or if I was going to have to re-mortgage my house to get in on this miracle! The truth? I didn’t have to mortgage the house, and while I am certain there are oil users who are also *ahem* herb users, everyone is their own brand of normal. Even the hippies! So I’m using oils and I like a lot of them. Nothing works for everyone, so not everything works for us, but many of them do. They aren’t magic, but they are useful. And I am doing my homework so that I don’t harm when I’m trying to help. And after enduring a treatment that was almost as bad as the illness…which was CANCER, for the love of all that is holy, it is amazing to see positive results from something that makes us feel better.

So that is our new chapter. We are taking life one day at a time – even though I really want to be able to plan and control everything – and are enjoying each other and life again. We are using oils and trying to get off some medications, but not all, and we feel better than we have in a long time. Which is amazing. So amazing that now I’m looking for a job and praying about sending the kids to a new school next year. ‘Cause, you know, we were afraid things might settle down and get boring. (No!!! We weren’t afraid of that! What is the matter with us? We are insane!)

 

Empty Pages

Last year it was easy to write about what was going on, and it was even easier to spew out how I felt about it. The feelings were complicated and often seemed to contradict each other, but they were so close to the surface and I felt so entitled to them that it was a fairly simple thing to put them into words. This year…not so much.

So, what is going on? Well, Adam is in remission and has now even had the port that was used during his chemo infusions removed. That minor procedure happened yesterday, so it is all over except for the lingering soreness as the incision heals. Many of the side-effects from chemo are also still lingering: the most notable is the peripheral neuropathy which cause both pain and numbness in Adam’s hands and feet, but there is some remaining sensitivity to cold weather, muscle weakness, and general malaise (which is French for “I feel like crap”) as well. And that is on the physical side. Our family’s emotional stability has been, thus far, one of the biggest casualties of the cancer battle. We are all just a bit…crazy. Having kids on the cusp of puberty go through the trauma of watching a parent go through what Adam went through…well…let’s just say that losing our cool happens. A lot. To every single one of us. Often all at the same time. It’s loud. I mean, really, REALLY LOUD.

How do I feel about it? I don’t even know. I am so tired of being so tired. I’m thoroughly sick of my own internal whiny monologue…you know…the one that keeps becoming an external whiny monologue, or sometimes dialogue? I am so ready to feel better that I feel guilty for not feeling good. How’s that for emotive? Really? Could it be any more about feelings? Yes, that ephemeral aspect of the human condition is completely monopolizing my coping skills…and obliterating them. I am accustomed to being able to trace my emotional responses to some real thing that is happening and then to dealing with that concrete thing and then to feeling better. It is a lovely little system that I have always been fairly adept at engineering…until the real thing that I had to deal with was something so huge and all-encompassing and beyond my control. I cannot make myself or anyone in my family better, no matter how well I engineer the machinery for coping. I really hate that. Really, really, really. HATE. IT.

So many of the pages of this year so far are empty. I have nothing that I want to say. I’ve said it all and it is all still there anyway. Talking it out doesn’t help this time. We are still taking life one hitched breath at a time, and can still do nothing but wait for the wounds – physical and emotional – to heal. And pray. I’m doing a lot of that. Many of the prayers go like this: “Dear God…I don’t know just, oh GOD.” And I’m pretty sure that’s okay, because He does know. I hope for some direction soon, but for now…I’m just trying to learn to be.

We are okay…and we aren’t. We are better than we were…and we are worse. And this is life. And we will take it one day at a time. And I hope to fill some pages along the way.

 

Caught in a Whirlwind

Don’t get me wrong: we are doing really well. Every time someone asks that throwaway greeting question, “How are you?” I am astonished to find that the answer is legitimately, “Good!” (How on earth do I punctuate that correctly…aaaagh! My peace is destroyed again…but hooray for the bane of peace to again be grammar instead of cancer!) I still live in a place of caution, but it is cautious optimism instead of a sense of tiptoeing through life fearing another proverbial blow to the head.

I actually feel a bit apologetic. My new normal is starting to look a lot like my old normal – dealing with household stuff, recalcitrant children, my own inertia – but Adam’s new normal still holds challenges that the rest of us only deal with in the most peripheral way. And that is to his credit. He could make family life all about his pain, numbness, frustrations, and the general irritations brought on by neuropathy, but he hasn’t done that. He is happy to get back to work, back to life, and hopefully back to full health. He can actually work a full day – he can even work several of them in a row! Who knew how exciting that would be?

So where is this whirlwind, you ask? It is all the stuff that we just aren’t keeping up with as well as we did this time last year – all the details of life that we ignored for ten months while we dealt with cancer that are now hovering over us like an imminent tornado. There are receipts to be recorded, categorized, and filed for taxes; there are computer files that were never backed-up and were almost lost (though recovered, thank you God!) when Adam’s computer crashed; there is a pesky budget that needs to be planned and implemented; there are chores to be assigned and overseen and other chores that I can’t pawn off on the kids and actually have to do; and the list goes on. Many of the things that need to be done aren’t difficult or time consuming by themselves – we just aren’t accustomed to functioning anymore. We have to get back to that. We have started cooking and eating at home as a family again. It is actually nice. Most nights. Except when certain small-ish (almost as tall as I am, but whatever) people pitch fits about broccoli, seating arrangements, and other terribly important matters…but I digress. Real life is making an appearance at our house and we are enjoying it for the most part, though I do have moments where I think fondly and uncomprehendingly of how much more together I was last year…when I could only think of roughly 7,284 things that I wanted to be doing well and wasn’t.

That is our new year so far. How is yours?

Pressed in on every side…

I don’t want to be one of the angry bloggers. I don’t want to complain all the time. I do want this year to end already. I want my septic and/or electrical system to miraculously be fixed. I want the cars not to need tires and brakes and fuses and oil changes and headlamp bulbs and…you know…stuff that costs money. I want people to ask us how we are and if we are having problems and how we can best be served in those areas without having them jump to conclusions about our spiritual health. I want people to stay at the church…or if they must leave to do so as graciously as possible. I want radiation to start already so that we can get to the end of it. I want insurance companies to act like…well NOT like insurance companies. (Not only are we trying to get next year’s coverage squared away – with limited success; but we are also now waiting for pre-authorization from the insurance company for radiation – which can take 30 days. I was also hung up on twice by said company. Displeased is putting it mildly. Furious not an overstatement.) So I’m a bit put out with the doc’s office that failed to send the request sooner. I want to treat Adam with respect in the midst of his fluctuating chemo-brain. I want others to do so as well. I’m not doing super well at that sometimes, and I’m afraid I’ve infected everyone. He is doing so much better…he’s mostly back to being himself…just a less inhibited version. So chemo turned him into me. I’m SO SORRY. Though his temper is still less volatile…. Sad…. So we’re sad and tired and frustrated and trucking along because that is all there is to do. Please God, can we have a few easy days?

We’re tired. We feel

I don’ wanna….

Do you ever have those moments when you look around, see numerous jobs that need doing and just think, “Nah…I don’ wanna?” I know – it’s a bit embarrassing to know that you look, feel, and sound about 4…or 14…but still, that’s exactly what is going through your head. Oh. You don’t have those moments. It’s just me. All the time. Shoot. (Which is not the word that I’m really thinking, but is the one that I’m writing anyway. Even though I SO don’ wanna.) I’m doing lots of things that aren’t high on my list, and I’m ignoring things that would be higher on my list if only I had a little bit more mental energy. So school lunches are getting made, laundry is getting washed and folded (though rarely put away, to be totally honest), dishes are getting done, and everyone is being fed and put to bed at night. Other housework is suffering. It just is. I started a new job last Monday, and now am away from home from about two to six every weekday afternoon. I like my job – I’m an after school care worker at our church’s early childhood center – but I have less time and less energy than I did before and I wasn’t getting the housework done before. And I’m almost sorry about that.

I also have the bigger don’ wanna moments. The ones where I dread telling my kids to do something because I know it’s going to be a fight, and I know I have to win, and I just don’t even want to go there. I get to be the bad guy parent most of the time, especially now that Adam is out of commission so much of the time. It is so…tiring…. I made a comment to the kids the other day that something wasn’t worth fighting over. My darling boy, who is way too much like his mama, replied, “Everything is worth fighting over. Hashtag: everythingisworthfightingover!” (Everything is also worth a hashtag. He’ll be a menace on Twitter one day.) This is the philosophy by which he lives: everything is worth fighting over. He has an opinion on everything and wants to be right all the time. Did I mention that he’s a little like me? Sigh. My mother didn’t even saddle me with the mother’s curse (“Someday I hope you have children who act just like you….”), yet it worked…in spades. I am so tired of the endless cycle of asking/telling/instructing followed by crying/yelling/disobeying followed by crying/yelling/punishing (yes, I know, I shouldn’t cry and yell) followed by more crying/yelling/disrespect leading to more disbelief/punishing/banshee-ing culminating in submission/obedience/sniffles and deep breathing/exhaustion/wine. Couldn’t they, just once, you know…OBEY? Because it isn’t just the one who is so like me that is fighting me. Darling daughter is also a fighter. Or a manipulating sneak. Still…not a submissive, compliant model child.

So I don’ wanna. I forgo grown-up-ness for today. I will henceforth proceed directly to napping. Because I already have a caffeine headache from all the coffee I’ve ingested over the last week and I just need to relax. Bring on the soaking tub, candles, and wine. And please: nobody need me for a few days, okay?

 

P.S. For those who tend to worry: we’re good. Last week was great, even with my new job and the new school year starting. I’m just tired.

Finding Heart and Brain Space

I really like how I feel when I am accomplishing things. As much as it sounds like paradise to be able to sit around and do nothing but read, the reality is that those days leave me feeling cranky and dissatisfied. There is a phrase from Robin McKinley’s book, The Blue Sword, that perfectly captures it: “moral irritability.” As in “she wasn’t exactly tired, she just felt a sort of moral irritability that came from the belief that she should have spent those hours in sleep.” (I don’t actually have the book here with me at the cancer center, so that isn’t exactly right. I’ll correct it when I get home!) So yeah, moral irritability. That uncomfortable feeling of knowing I should have done something, but the reality that I didn’t…and even that I just couldn’t. I am fighting inertia that is bone deep and related not to physical fatigue, but to mental and emotional exhaustion. I miss my husband. I miss relaxation untinged by grief and stress. I miss being able to plan for even the immediate future. I miss sharing the decision-making. And I feel guilty for feeling so negative. Because Adam is still here and we have every reason to hope that he will recover fully. He will be back and so will my so-called normal life. And I am so thankful for that…though I’m often hesitant to count on it. Maybe that is what I miss the most: that sense of certainty as to what the future will hold. So I don’t have the strength of heart or head to plan anything concrete. I am balanced precariously on a beam and cannot see the end clearly, so my equilibrium never quite stabilizes. I know that this feeling won’t last forever, but for now I am fighting paralysis. My big achievements are along the lines of getting the floor swept, the pool treated, the taxes sent to the CPA, and the laundry done. I still stink at getting the dishwasher unloaded, but loading it and doing the hand-washing are doable tasks. You will notice that getting the bed made is not on the list…not an oversight. We can’t even get the trash taken to the road about half the time. Grocery shopping and cooking are also spotty. No one wants to eat. And I hate cooking for an unappreciative audience, even at the best of times. So I keep wondering why I feel so tired at the end of the day. And how it is that I have no energy to write. I don’t even have the attention span to finish reading books half the time.
But. I don’t want to stay here, and I am trying not to give in to the exhaustion. I want to find space in my heart and in my brain to do both those things that I need to do and the things that I simply want to do. The exhaustion-induced inertia and the attendant moral irritability are…exhausting. The cycle is deadly. On the one hand, there are things that are simply going to be true during this time in our lives while Adam is in treatment, and there with be a natural recovery period after it is over where we will address many things. On the other hand, I can’t put everything off until that point and simply hope that it will all get better “later.” I keep thinking of the Brandi Carlile song that says “even a fool can tell you / someday never comes.” But still, someday Adam will have to recover strength, will regain some of the weight he has lost and will overcome chemo brain. Someday, we will take a celebratory family trip to Disney World and he and I will take a belated birthday/anniversary trip somewhere too. None of that can happen until chemo and radiation are done. But how low will I let myself get in the meantime? Will I let myself gain weight through comfort-eating, knowing that I will just have to lose it again? Will I let my kids and myself get lazy, knowing that we will have to relearn a how to live with discipline and rules and chores eventually? Obviously, I can’t remove all the stress form our lives or expect any of us to move through our summer as though nothing weird is going on. But there has to be a happy medium; something in between pretending nothing is wrong and wallowing in the wrongness. So I am writing. And I am spending more time reading my Bible instead of only disappearing into fantastical fiction. I am cleaning the pool, doing the dishes, swiffering the dog hair off the floor and even cooking some of the time. I am even trying to watch what I eat so that I can stop gaining one pound for every three that Adam loses. I need to start exercising because that commercial about depression hurting? It’s true. Whether I am depressed or just stressed or whatever, I hurt and I hope that exercise will help. So just like Adam has to mentally prepare for chemo, I have to mentally and physically prepare to be a single parent for most of one week out of two. And that preparation is finding the end of the beam we are balancing on: having to remember that our focus is on God – an immutable strength outside of ourselves who sustains us and to whom we give all praise. I may prepare, but I am starkly aware that none of the ability comes from me. At least, I can but hope it will work out this way…because all I can see right now is the space right in front of me. I will trust the end of the beam is there and I will continue to look toward where it must be. Because maybe finding heart and brain space is really about having faith that it is there somewhere. Because where else is there to go?

argh

You know those days when you forget the biscuit in the oven until it’s a charcoal briquette, and you realize that the kids’ dental appointments that you confirmed just yesterday actually do conflict with something, and the initiative you praised in someone is getting everyone in a sticky situation that you maybe should have foreseen, and your cat used the (thankfully empty) laundry basket as a litter box? Yeah. It’s been that kind of morning. So, the biscuit is trashed and breakfast was re-made, the appointment is rescheduled for Monday morning, the kids’ teachers have been emailed, the non-litter box (and floor) have been cleaned and sanitized, and we’re still waiting to find out about the initiative/sticky situation. Some days all the productivity goes into undoing and redoing things that you thought were done already. The French have a saying for that: c’est la vie. But I have a saying too: Ce n’est pas une partie de la vie dont j’approuve…. [It’s not a part of life of which I approve….] (If you speak French, feel free to kindly edit and/or critique my grammar. I cheated and let the grand poo-bah that is the interwebs help me with my conjunctions and prepositions…. I wonder if that helped or hurt my cause?)

Days like this make me tired. I don’t build houses, or fences, or anything else. I’m sitting at a computer trying to catch up on email and psych myself up for doing the editing that needs to be done. But the little distractions, the ones that really aren’t a big deal and are fairly easily dealt with, derail me every time.

But. It’s amazing what a hot shower, an extra cup of coffee, a diet coke, or a minute to do my hair and put on makeup can do. So. Done whining. Or whinging – I love that word, just not when I hear someone indulging in the activity, even if it’s me. Onward. Besides, it may have been a slightly annoying morning, but it’s almost noon, so morning’s over anyway. Back to work….