Well, it’s May. I made it through April and it was, in fact, bonkers-busy. But it was also a very HARD month filled with incredible learnings from all the sides of relevant feedback, difficult conversations and intense emotions. As I consider these past many weeks and contemplate the weeks ahead, I think the theme for May will be based on the upside down world of Alice’s Adventures in Wonderland. (It’s true what they say – you either love it or you hate it…) Personally, I LOVE it. I love the creativity. I love the story. I love the writing. I love the nuance. I love the Disney version. And… dare I say, I even love the Johnny Depp version. But most of all, I love the perspective that it invites. In one of the first scenes, Alice is falling, down, down, down deep into her imagination and while she is falling she spins upside down, and then upside down becomes right side up, and then that is where the story takes off. . .
I think it is here, where upside down becomes right side up, that I live most of my life.
I was told on several separate occasions this past month that I was the weird one because of how I see and live my life. That the way I process and articulate things is rare. That my normal is abnormal by “normal” terms. That my willingness and ability to dig deep into the hardest stuff to find purpose is unusual. Well friends, I’ll tell ya, not only am I THRILLED to be known for this, I am GRATEFUL to be an Alice. “Alice had got so much into the way of expecting nothing but out-of-the-way things to happen…” Lewis Carroll-Through the Looking Glass, Chapter 1. I LOVE it here because it’s in the white-rabbit-chase through the ‘out-of-the-way’ that I find my ‘whys,’ where meanings matter and how purpose is discovered.
Past Posts from 2018:
Surprise Waves :: April 26, 2018
I’ve been able to talk about my cancer and treatment relatively matter-of-factly a majority of the time. Granted, towards the beginning it looked a little different (or let’s be real – a LOT different) where I would be emotional (anywhere from sobbing because I was sad to screaming because I was angry)… And the emotional response to talking about it and answering questions would ebb and flow depending on where I was and what I was encountering and how much time I had to process. All pretty normal when dealing with the freight train of cancer blowing through my life…
Today, I was talking with a friend about the upcoming summer and my scheduled surgery and I was hit with a wave of emotions that took me a little by surprise. Not that I should have been super surprised by them, but nonetheless, I was. I have been able to talk about this surgery several times prior to this without much emotion – it was simply a matter-of-fact discussion. It’s what is coming next. It’s a part of the story. It’s something that we’ve had planned from the very beginning… This surgery itself is not a surprise (whereas my cancer diagnosis was a surprise). This surgery has had months and months to be processed and thought about (whereas my cancer diagnosis hit hard and fast and was instantly destructive). So today, when I was hit with the tears while talking about surgery, I was taken aback by them.
In thinking about it now, sure…..I am sad that I even need to be reconstructed. I am sad that cancer has taken a significant part of my body. I am sad that I have scars to forever remind me of this immense loss. I’m guessing the tears also come from anxiety. And fear. And more unknown. And pain. It was a moment where the reality of the depth of what I have walked (and what my family has walked) hit me hard. We’ve all been in “go” mode…get from one thing to the next, survive this or that, countdowns to the end of a treatment phase…. but in the gap between what is behind and what lies ahead, the “quiet” of the gap, caused a moment where the loudness of the reality came crashing into me.
It’s not so matter-of-fact when we are talking about “fixing” what cancer took. It’s not so matter-of-fact when we are talking about the extensiveness of this surgery. It’s not so matter-of-fact when the success of it will remain unknown until I wake up and look down. The tears make perfect sense, after all.
Follow Up :: April 27, 2018
I had my first post-treatment follow up with my radiation oncologist today. First – I got to see all my radiation therapists and that was such a sweet time. They were happy I visited…and I was so excited to see them. Second – Dr. Dorn said everything looks wonderful and she is very pleased with how I am healing after radiation. She doesn’t need to see me again for 6 months. She was glowing when she said that to me…it was almost as if she couldn’t wait to utter the words “6 months”…and I’m guessing it might be among her favorite news to give her patients. That said, it felt trippy to hear. 6 months from now will be after surgery…6 months from now will be the end END of chemo…6 months from now will have had the anniversary of diagnosis and surgery come and go…6 months from now will look a LOT different. And I wonder how much hair I will have…
It’s so wild how in the midst of something, time seems to stop and things that are temporary feel like they will never end. But then you can also look at that same something and see how it truly was temporary and it most certainly had an end. It seems so crazy that I have survived what I have survived…that diagnosis, double mastectomy, killer chemo and radiation are all behind me. I’ve written about this before but I think there are daily reminders of and a myriad of experiences in the practice of trusting the moment, trusting the purpose of the present, trusting that the end will come and trusting that good will be.
A Simple Celebration :: April 28, 2018
I got to do something today that I haven’t done since before diagnosis…I drove 15 minutes up to my parent’s house, hung out for a bit chatting with them, took my Mom to lunch at Panera, went to Kings and shopped (and got sushi), went back to my parent’s house and visited with them in their living room for a few hours. It is hard to believe that in 9 months I did not do that. Before diagnosis, it was an almost every weekend thing… It was a favorite thing of mine, so simple yet so special…….9 months. While everything looks different now and I am forever changed, I am so grateful to be getting some things back.
Please Lord, Let That Be. :: April 29, 2018
It was a good weekend… Annie’s volleyball, Haleigh’s Prom, hung out with my mom and dad, did some relaxing, and some cleaning… and went on a double date with some good friends… Now in bed getting ready for the week ahead. And I’m tired. It’s amazing how I tire so easily. Okay…it’s not really amazing, it’s completely normal for all that I have been through and still carrying, but still…I get so tired. I also looked back through some pictures today and got sad. And mad. And thankful. And tonight, at Annie’s bedtime, we sang “He’s a BIG God” and indeed He is…because He can hold my sadness, my anger and my gratitude all at the same time. As I get ready to fall asleep tonight, my stomach hurts…bad, my head hurts…bad, my body hurts…bad, so I pray sleep comes quick and easy and soundly.
Please Lord, let that be.
This Place :: April 30, 2018
It is so hard describing where I am at these days. I’m not post cancer (not by a long shot) but I am post some cancer treatment… I’m not pre-cancer (and will never go back to that) but certainly have days where I feel pretty close to how I did before this all started… I’m not done…or all better…or out of the woods… I’m also not where I’ve been anymore… I use descriptors like, “interesting” or “trippy” or “fascinating” or “wild” or “confusing” or “strange” or “odd” or “bizarre”…. But the actual word has not come to me yet. These words are the best I can come up with but they just aren’t quite right. I’m waiting for the day when the Lord gives me the word that I’ve been searching for….a word that describes this strange experience, a word that does justice to the tensions that I hold. Until then, I’ll continue to try and find ways to describe this experience…this place.
Tonight I sit here with tears in my eyes. Maybe it was my day at a Trauma-Informed Practice training, or maybe it is because my kid and my husband spent their evening volunteering at the Ronald McDonald House (a place where family members of a sick person can stay while their loved one goes through treatment), maybe it is because I have emotional triggers all.day.long.every.day. and I have to manage my heart in those spaces, maybe it’s because I have heartburn and stomach upset and all I ate was Cheerios, maybe it’s because I am tired and my kids are tired and my husband is tired. Maybe it’s because I have cancer and I sit in this strange, interesting, trippy, fascinating, wild, confusing, odd, bizarre place of in-between.
Because, Well, 2017 :: May 1, 2018
My head is so full tonight. Spending the last two days at a training that dealt mainly with trauma-informed practice will do that, I guess. It was hard work… I had to wear the hats of “organization representative,” “direct service provider professional,” and “me” throughout the whole training while also managing my own personal trauma triggers…because, well, 2017. It was quite the experience. SO good. SO exhausting. SO hard.
I’m pondering some personal application tonight but will certainly need lots more time to really have these last 2 days sink in. Nonetheless…here is what is swirling in my head tonight:
1. Women tend to hold trauma in emotional memory (opposed to remembering trauma as information only)…meaning that when trauma occurs, we will recall memories of the event with the same emotions (LITERALLY) that were felt during the time of the event. And we hold those feelings for a very long time.
2. Trauma has a biochemical/somatic element to it – when trauma happens, it alters the brain’s chemistry. When a trauma trigger occurs, the body remembers the trauma (LITERALLY) as if it is happening again as it was when it did….it’s the primitive brain in fight, flight or freeze…the brain doesn’t care if it is a memory of the event or if it is the event itself.
3. Trauma forever alters the filter in which the world and life is seen and experienced because of the disruption that the event caused on the entire being. Trauma requires new “rules” to be followed as self-protection; some of these new rules are good (like new healthy coping skills) but some rules aren’t “good” (even though they may be effective).
4. There is a dyadic way of thinking (black/white, right/wrong, yes/no, victim/survivor) and there is a triadic way of thinking (what will be created new from [this]; what will be preserved from before [this]; what can be destroyed because of [this]).
What is fascinating:
1. I had a friend send me a song tonight. A certain genre. A genre that was similar to songs they sent me right after diagnosis and through the first few weeks post-mastectomy. Songs that I would sit in my recliner and listen to for hours and hours in the quiet moments or in the middle of the night when I couldn’t sleep. Songs that brought Jesus close. I hesitated listening to this song tonight because I hadn’t listened to the other songs for months…I hadn’t heard them since, well, post-mastectomy. But I listened to it. And wouldn’t you know it – the emotions of that time came flooding back to me. I cried. And as the tears streamed down my cheeks, I could feel the heartache I felt in those first days of this brutal storm.
2. Additionally – I could smell the smells, I could sense the pain, I could hear the other songs in my ears, I could remember the temperature in the room… my physical body remembered those songs just as my heart did. And my whole body responded to that song tonight. My.Whole.Body.
3. I’ve written about this point before…my filter has been forever altered. I will never be the same. I will never look the same. I will never experience experiences the same. I am forever changed.
4. I have had moments throughout these past many many months where I have certainly thought “dyadically” about this: I am cancer’s victim/I am a survivor; I loathe this/I am grateful for this; Cancer is evil/cancer has saved me…. very much an either/or kind of thing. But today, I heard this idea of triadic thinking and it was an interesting moment of “hmmmm, maybe this is what I’ve been trying to get at in this ‘survivorship’ place….” What will be created from [cancer] – a new way of thinking, a new perspective, a better relationship with my Haleigh, a new appreciation for the medical community, a stronger faith, a depth to understanding about identity, an ability to redefine…the list could go on and on and on. What will be preserved from before [cancer] – my job, my family, my belief that God is good, my God-given identity with or without culture’s definitions of femininity, the strengths God created me with, authenticity, etc… And then, what can be destroyed because of [these creations and preservations] (or in other words, what do I not need anymore because I am living this experience – I can let go of insecurity, I can let go of blame, I can let go of hopelessness, I can let go of a mold that women feel like they have to fit in, I can let go of the need to control, I can let go of fear….and so much more.
I have a feeling that all of these will have opportunity to go deeper and gain more insights and meanings. But for now, I’m tired.
Past Posts from 2019:
AAAHHH :: April 26, 2019
I am grumpy. I am at my wits end. UGH.
Depths. Shadows. Light. New Understandings. :: April 27, 2019
The depths of where I have been are starting to take shape….When in the depths, everything in the present reality is hidden by the blackness of it. Will I run into a wall? Will I stub my toe? Will I fall into a hole? Does anyone know where I am? Is there a door that provides an escape? I can feel around in the dark and try to make sense of what’s there…but it’s all in my mind’s eye because I can’t actually see anything…it’s all determined by what I think I feel. The last two years of this battle have felt like this.
But I think survivorship is when a little bit of light starts to penetrate the darkness. Not a flood of light because that would be too much all at once, but just enough for things to start to take shape, for shadows to be created and for small but significant details to be noticed. What once was simply a guess is starting to become a known. What once may have been abstract now has some meaning. What once was shapeless and hard to make sense of starts to be recognized and understood. I’m not yet privy to the full picture, though…to the purpose of the depths. There is a protection that comes with the darkness. Things hidden in the dark, while still ever-present, remain in the dark because to know them fully would be too much to bear. …I’m still navigating unknowns and uncertainties and I’m still trying to make sense of what has transpired. But the further I get from the intensity of treatment, the deeper my understanding is becoming. Memories once suppressed are coming out from under the dark and bringing new awareness to the depths I’ve experienced…to the lessons to be learned. The gradual illumination is happening as memories and emotions begin to connect to meaning…and it’s a whole new intensity.
4 Days and Counting :: April 28, 2019
Not much to say tonight. It’s surgery week and the countdown is on. 4 days until what is hoped to be the last surgery (until the implants need to be replaced, anyways). Praying for health and safety for my surgeon, anesthesiologist and nurses.
Volcanos and Ice Storms :: April 29, 2019
Hot flashes SUCK. I feel like I’m melting into a puddle of sticky goo. I was so hoping those would go away (or at the very least, lessen) going off of tamoxifen. But no. Then 5 minutes later I’m freezing. And my body legit hurts to be cold. And the best part – this hot then cold then hot then cold nonsense is a 24/7 thing.
t w e n t y f o u r s e v e n
*eyeroll
I’m grateful I’m alive. No doubt. But the lack of temperature regulation is crazy-making.
Mo :: April 30, 2019
I got to see a dear friend today who I haven’t seen in a good long while. And she’s currently in a cancer battle of her own. There was something extra special in the hugs that were shared. In the encouragement that was offered. In the time spent together. Mo, you brought light to me today. I love you. And I’m grateful for your grit.
The Week Of. The Day Before. :: May 1, 2019
Oh man the days leading up to surgeries are tough. On the conscious level, I can recognize some anxiety, some nervousness. On the subconscious level, I am all sorts of a mess…but I don’t always know the words or images or feelings to describe what it’s like. I’m preoccupied. I’m pensive. I’m prickly. I’m “off.” I find I spend a lot of my quiet moments thinking about what the day after surgery will feel like. What day 3 will bring when I can look in a mirror. What day 2 will bring emotionally as I sit in the waiting. It makes me realize that managing expectations is a really hard thing even with allllllllll of the practice I’ve had.
I was talking to a friend today and she said, “correct me if I’m wrong, but while you are so strong, your reserves must be quite low.” Hmmm, yup. That’s a pretty accurate statement. I’m able to wake up and face the day and draw on resilience for each 5 minutes that come. But yeah, the reserves are getting low. Tomorrow is the day before my 10th surgery/procedure. And it’s the day before the addition of new scars to add to my 24. It’s no wonder I’m preoccupied…
Past Posts from 2020:
(No Posts for 4/26/20, 4/27/20, 4/28/20, 4/29/20, 4/30/20)
Grace Fatigue :: May 1, 2020
There has been a low-ness these past couple of days here in my little world. Interactions between my people have been slightly different. And while it hasn’t been obvious or through very demonstrative behaviors, everyone seems a bit ‘chippy.’ Of course, this social-distancing, face-mask-wearing, outlet-hindering, life-changing pandemic has something to do with it, but maybe if I can call it something, then I can work with it. Instead of it being just a ‘general sense’ or a ‘gut feeling,’ it can maybe become tangible and therefore manageable. I think I’ll call it “Grace Fatigue.” Grace is hard because it takes vulnerability. It takes patience. It takes intentionality. It takes selflessness. It takes chances. It takes steadfastness and longsuffering. It takes resolve and it takes initiative. It takes things that are often anti-human nature and therefore, takes energy and attention. And so, grace is hard. And we’re already managing hard. And we’ve been managing really hard for a couple of years now. And we’re tired.
Gratefully, God doesn’t tire of grace because He is inherently grace. He doesn’t have to ‘try,’ rather, He just is. And in that place of gratitude, I can do 5 more minutes.