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!)

 

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Clubs

I once thought of clubs as an integral part of childhood…and occasionally the bane of my existence. I see now that they never go away. Sometimes they are overt, but often clubs for adults (no, not THAT kind) are unspoken. Instead of a secret handshake, it may be a shared look. Grief. Pain. Experience. There is the infertility club, the child-loss club, the cancer club – just to name a few. There are survivor clubs and it-kicked-my-ass clubs. But here’s the thing. These little semi-secret, exclusive groups do the same thing they always did: they provide a safe place for members, and they deter the uninitiated. The one is good…the second? It still hurts to be on the outside. The older I get, the more I realize that kids and adults aren’t different in kind, just in experience. Sometimes things hurt, and we can’t fix it. Sometimes we have to let our loved ones go to where they need to be…even if it isn’t to us. I am so not going to do that well when the loved ones in question are my kids….

Being Proud of Myself

I think I might actually have a new emotion about last year. In the midst of the screaming anger, shrieking fear, and whimpering helplessness there is a new whispering pride. We made it. I made it. Adam’s year was awful…but so was mine. For the first time in our marriage, we struggled through something that we didn’t and couldn’t share, as chemo isolated him from everyone – including from the kids and me. It is not an overstatement to say that we survived by the skin of our teeth just as he did…we all survived different trials.
I often feel guilty for talking about my difficulties last year. Don’t get me wrong – that guilt doesn’t seem to stop me from talking about it, it just makes me feel vaguely wrong. I’m trying to get over that. I’m also beyond ready to feel better. I want to feel like doing something again. I want to be done mourning and to rejoin real life. I’m not yet ready to say that I do feel like doing anything, or that I am done mourning, or that I have rejoined real life…I’m mostly at the “want to want to” stage for now. But that is a step, and it is one that allows me to be proud of the things that I actually am doing – whether I enjoying the doing or not. And that is kinda what real life is about anyway.
Have you seen that video about doing things “like a girl?” The upshot is that being a girl isn’t an insult and that we can do things well regardless of our gender. It, of course, made me cry like a…38-year-old, overly emotional, easily moved…girl. (Or woman. Or lady. Or whatever.) It also reminded me that I have strengths, not just the weaknesses I’ve felt plagued by. I hope that the pride I feel in them is thankfulness and not hubris, and I know that it feels a lot better than fear….

Monsters of One Kind and Another

Today is one of those days when I really need to stay away from Facebook. It is not just the obvious time-suck that I am trying to avoid (rather unsuccessfully, at that), but the engendering of the proverbial green-eyed monster. Yep. Everyone whose kid is being good, loving to write/read/obey/not act like any kid who lives in my house, everyone who is going on a fabulous trip, and everyone who is in general happy with his or her life is making me crazy at the moment. This is, of course, ridiculous. For one thing, I am not having a bad day, week, month, or even year. Finally. I simply seem to lack the basic human capacity to be happy for anyone today. Yes. I know. This is entirely my problem. See? Staying away from Facebook….

Unfortunately, my envy-monster is not the only one I’m seeing evidence of on social media today – or yesterday, either. The other two monsters kept me on the verge of tears yesterday – for strangers, no less, and I am afraid I’m too tired to do it again today. You see, one of the bad guys is cancer – in this case a stage IV brain tumor in a four-year-old. This is not my story, and I couldn’t speak to what the family is feeling or going through, even if I wanted to. I just hate the monster. HATE it. And yet I can’t leave it alone. I can’t just ignore the posts that are showing up on my news feed from disparate friends from Virginia Beach to Jacksonville. So I cry and pray – really eloquent prayers like: “Oh God, oh God, oh God. Be with them and thank you and oh God, oh God, oh God.” Our own cancer battle was a horror to us – and it still is a lot of the time…and it was a GOOD NEWS cancer diagnosis – with clean scans and remission and all that. And it was and is the single worst thing in this world that has happened to our family. I hurt for me and for them and for everyone, and I am having a hard time with happy. Because there be monsters here.

The other monster I’m struggling with today was perhaps best described by a certain Elizabethan playwright as outrageous fortune. We sometimes call it bad luck, Murphy’s law, or the effects of a fallen world – generally depending on our spiritual background. It is the bad things that happen…like massive, fatal car accidents that take children and devastate families. It is another horror that I cannot pretend to understand or explain, but that I cannot ignore. So I hug my loved ones, live my life in the best way I know how, and pray for all the hurting people out there – even if those prayers are wordless groans for pain I cannot fathom and fear in depths of my heart that I didn’t know I had until they started hurting. “Oh God, oh God, oh God….”

So there be monsters here. Petty ones and nasty ones and horrific ones and probably stupid ones. I hate them, but they give me words that I never found before I knew them. Maybe owning that reality will be the thing that allows me to enjoy the good things again. We are fighting to celebrate victories rather than to fear possible defeats, and seeing that facing the monsters works better than pretending they don’t exist might be a step toward that. I am also trying to come to terms with the reality that sadness and anger resonate with me more than hope does. (Cue worried phone calls from parents…I’m fine – don’t worry!) It is real to acknowledge that I miss my friend who was taken by cancer and that I don’t want to lose anyone else, and it is true that I don’t want anyone to have to bury a child or a spouse and that I hurt for them when they do. “Oh God, oh God, oh God….”

Are you fighting your own kind of monsters? Are they real or are you afraid they’re only in your head? Does that actually make them any less real?

I wrote the above, and then realized that it is mostly about me. Which is normal, I guess – I’m the one I know best. But it feels wrong to only share my reaction to something without giving you the chance to see the real stories if you want to. It feels selfish. “Oh God, oh God, oh God, help me love others and not just indulge my vicarious pain; let me remember that how I feel isn’t the main story here!”

A dear friend who has been fighting a monstrous grief of her own for the last year reminded all of us that a simple, practical, financial kindness to a grieving family is of more help than you might think. “There is nothing that anyone can say to ease the pain…nothing. But this tangible act of giving can keep a family from having to think about or worry about financial matters. Because sometimes, it takes all you have to just breathe.” Here are links, if you want the stories to touch your heart too…it may not be easy, but it is life in the trenches – and I think that is where we are supposed to be. So maybe Facebook isn’t so bad, after all….

http://bensauer.blogspot.com/

http://www.gofundme.com/94wk7o

 

 

 

 

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.

 

Hard Things

Life is full of hard things. I get discouraged by little disappointments as much as by major catastrophes, and I don’t think I’m alone in that. Dealing with Adam’s cancer diagnosis and treatment this year have not changed my concern over my kids’ issues with school, friends, activities, and behaviors. I have also had plenty of time to be occupied with my personal angst…. I’ve had days where I couldn’t stand to look at facebook or twitter – happy posts made me rabidly jealous (or I didn’t believe them) and sad posts grieved me as though the struggles were my own. Did I mention a preoccupation with my own angst? I don’t think I can call this year anything my a year of crisis. Medical crisis, emotional crisis, political / financial crisis is even in there. But it was never a year of spiritual crisis. Not liking the ugliness of a fallen world – even feeling rage at it – doesn’t make me mistrust God. It makes me know that He is better than this world. That this is temporary and that is a good thing. This is the only world I know, and without a picture of its brokenness, I would paint it as heaven in my mind. I have a real hope – not just in the world to come, but in my life here and now, that there is purpose even in suffering. I think of the verse that says “Count it all joy, my brothers, when you face trials of various kinds” (James 1:2). How I wondered at that verse as a child! How can trials make one happy? For me, it’s not that. The beautiful mystery of trials and suffering is that I still have joy. I’m not happy and I rage…and I have joy. “Oh look – joy in the Lord. Huh. Where did that come from?” Duh. So I consider. And yes, I know the rest of the sentence is about perseverance and being made complete in Christ. All that is a peek at why, but I am still considering the simple fact that I can consider it all joy. My mind, heart, and soul are simply too scattered to think, feel, and know only one thing at a time. And some of those things seem inconsistent with each other. But there you have it. Joy. So crisis doesn’t mean loss of hope. It’s not always something to be afraid of. It’s one of the hard things, but it isn’t without meaning.

4

A long overdue update

So…there isn’t really much to update. Chemo has been history for three weeks and all we can say is “good riddance.” But everything else is about the same. Chemo brain is a pernicious, persistent pestilence. I hate it. Not as much as chemo itself…but almost. I miss old Adam. Thankfully, we are all getting more and more glimpses of him. He is eating better, staying awake more, and is slightly less…erratic. He goes in to the radiation oncologist next week to be “marked” for radiation. That actually means that he’s getting tattooed. Which does make me smile. He wants a cancer survivor tattoo also, and this marks a huge change for him. I have wanted a tattoo (or at least had the safety to say so since I could blame him for not getting it) for many years. The time may come, if the desire remains as chemo brain fades. In the meantime, I torture him with ideas of what marks they could put on his hips next week. In fact, the marking appointment is scheduled for his dad’s birthday…what a tribute! But alas, this is not a creative inking…. And then radiation begins. We have been in deliberate denial about this coming treatment – it is our way of letting today have only today’s allotment of trouble – but it is coming time to think about how the next several weeks will look. We have another six days of willful ignorance, and then we must face decisions, planning, and whatever trials radiation will bring. Pray for us all. We are so tired of this, but we want to finish well. At least…I really hope we all want the same thing. That may one of the biggest prayer concerns!

In the meantime, I feel like I am seeing and hearing about cancer everywhere. Those who are being given ever worsening news about their prognosis or recurring tumors or failed treatments. The hope they have in the face of this suffering is humbling…and the fear can be crippling: there but for the grace of God go we all. So we take one breath at a time and fight to be thankful for what we have. We seek to be helpful and also receptive to the help of others. We try to be a couple and a family when we each prefer to selfishly wallow in our grief. And I cry a lot. And sometimes yell. “But aren’t you glad it’s over?” OVER?!?! Only chemo is over. Everything else marches on. God bless us all. Because those who mourn will be comforted.