So yeah, it is perfectly normal for kids to think that their dad is big and strong and even scary (at least when he’s angry), and I guess it’s okay for my kids too…except that their dad is ADAM SCOTT TISDALE. Seriously, people. I may be wonderful and fabulous and amazing (ahem, you should be nodding and cheering here), but no one – not even my own mother – thinks that I am nicer that my husband. Well…no one except my children, that is. It boggles my mind, and even makes me giggle with slightly malicious glee at times…which just goes to show…. But the truth is: he’s a dad and he is a little scary and angry and impatient. I mean, so am I, but apparently that is no big deal. Daddy is the scary one who is hard to talk to. That’s right. One of my children came right out and said that he is hard to talk to. I was dumb-founded. Kids are weird. Parenting is hard. Spring Break is no fun if you have no big plans. And, tee hee, Adam is meaner than I am!!!!
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!)
Sometimes the was someone says (or sings) something cannot be improved upon: The waiting really is the hardest part. Of course, cancer was the hardest part too; as was watching someone I love being poisoned by medicine that would supposedly eventually make him better, and parenting insecure, scared preteens without much input from their dad, and myriad other things. But waiting…that was and still is a constant suck in our lives. We are waiting for Adam’s side-effects to abate (without knowing if or when that may happen), we are waiting to feel anything but shell-shocked, we are waiting for a family vacation in October (yay!), and more than anything, we are waiting for this mythical new normal thing people keep talking about. It reminds me a bit of when the kids were babies and no two days worked the same way. Adam and I were so ready to settle into a predictable routine, but it never quite materialized. We are still like that. The same problem requires a new solution each day…and that is to say nothing of the new problems that are constantly popping up. But we are so tired of living life from problem to problem. How can you just be when you are constantly putting out fires?
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.
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?
This is now the third draft of this post. I hope it will be the final one, but there is certainly no guarantee of that. I have so much that needs saying and so little capacity to say it well. So. Merry Christmas. We love you all and are so thankful for your love, prayers, and support over this year. And, oh my, thank you God for the end of this year! We are at an end and a new beginning. It is apropos. All treatment is complete, and we begin the remission journey. For the next five years, Adam will be scanned, examined and tested at regular intervals. If, by God’s grace, he is still cancer-free at that point, he will be considered cured. We will at some point be capable of being happy about that, but for now, we are simply numbly grateful that we are done with treatment.
For right now, we are trying to recapture a home and family life that aligns with what we used to have. You know, the kind where we spend time together instead of each hiding in our rooms. I want to start cooking and eating together and planning for the future again. Adam has to relearn how to do all sorts of things – from buttoning buttons to typing to balancing all his responsibilities at home and at church. We have to forgive ourselves, each other and everyone else for hurts intentional, accidental, real or simply imagined. And we still cry a lot. We hope we’ve learned to be gracious with others and with ourselves through this ordeal.
This Christmas isn’t about giddy excitement – except for with the kids who absolutely CANNOT calm down…. But for us, it is about comfort and consolation. Peace. It is a quiet sort of joy and that is all I have the capacity for. We barely made it…and only by the grace of God and with the help of loved ones. But that isn’t a bad picture of life.
So here is your virtual Christmas card in blog form…with no pictures because…well, you know. I look like crap! Everyone else is cute…. We are here. And we have great hope for 2014: we are tentative and wounded, but we are trusting and healing.
Farewell 2013. You are the year brought to us by cancer and we will not miss you, but we will never be the same and will be thankful for the lessons we have learned and the love we have given and received.
Good things can be really hard. Or hard things can be really good, maybe. This weekend we had a concert celebrating the end of Adam’s cancer treatment…even though he is only 20% done with radiation. (Which finally started – praise God!) We had a hard time getting all the details together, we had a last minute scheduling issue, and none of our family was able to come. Adam is so much better, mentally and physically, but he still has a long way to go to get back to anything resembling where he was this time last year. Our kids are also doing so much better…but they are still adjusting to Adam as parent again. And me? I’m still trying not to be angry about the things I can’t fix and the things that I have to do, largely by myself, because of Adam’s continued fatigue, weakness, and neuropathy issues. Sounds like a recipe for a great time, right? Or maybe a disaster? But it was great. So amazingly great in it’s real life imperfections.
The concert was wonderful and we so enjoyed meeting and chatting with Jeremy Casella, the amazing artist who graced our church with his music. It was emotional – he played a favorite song of mine that was sung at the funeral of a dear friend. I bawled. It was also joyous, musically and socially. We saw friends who’ve been praying for us faithfully for months…and as a church family, we took the chance to take a deep breath and be without worrying. At least, that’s what I did, and I hope everyone else did too. Sometimes life sucks…but God is good all the time (all the time, God is good!). I loved our Veteran’s Day…because I love any day that involves sleeping in and then reading for an hour or two. But after that, I actually got some details around the house taken care of…and it is so freeing to feel vaguely on top of life! I also spent several hours shopping separately with each of my kids. And we all enjoyed all of it! It is amazing! We got new shoes for Ethan amidst extended explanations of the inner workings of the world of Pokemon. His feet are now only 1/2 size smaller than Adam’s…we are calling him Big Foot. He also finally got a haircut. He probably lost two pounds of hair. We were just a bit overdue on that…. Kara and I went shopping and she got a dress that 1. I approve of, 2. she loves, 3. fits correctly and 4. was on clearance!!!!! That never happens. So, yeah, she did decide that her stomach pain was appendicitis…but we got over that. And yeah, the winter coat I got Ethan is too big, so I have to go back again and return it…but it was still a great day with my kids. And we needed that.
It was a weekend of joy with friends, but bittersweet memories of one who is missed here, as she has gained heaven sooner than those here who miss her. She was brought to mind by a song, by a tv show and by the knowledge that she would understand that I like being with my children more now than I ever liked it when they were little. It was a weekend of remembering those who have served all of us by the work and sacrifice in the military – including all four the my kids’ great-grandfathers. A combat Vet and family member thanked me for the inspiration that my blog has been on his personal journey home. I’m humbled by the very idea. I want people to like what I write, but I never imagined that God would use my words to reach and inspire people as He has. It was a weekend of preemptive celebration – cancer treatment isn’t over, but the last phase has finally started, and the end is in sight. And not for nothin’, Adam has felt no side effects at all so far. Talk about a contrast from chemo…. We are doing well and the end of my rope is back in my hand, instead of being barely visible in my rear-view mirror. “One day at a time” feels manageable again, rather than feeling like walking blindly through a sandstorm. So I will enjoy the gift of peace and leave tomorrow’s worries till tomorrow.