Have you ever said a word (or a phrase) and then stopped for a moment and examined said word (or phrase) thoroughly? The word nerd in me does this often…what is *actually* being said? Am I saying what I am really intending to say? Is there a more accurate word for [this] situation/feeling/experience?
I think so often we say things because they are comfortable ‘fillers’ in our language or in our every-day-talk… “at least” is an example. Clichés or the standard, ‘How are you?’ ‘I’m fine’ Q&A… Even using the word “literally” when you actually mean “figuratively” is an example of this. “Actually,” is actually an example, as is, “like” and “really.” Now consider the word “just” . . . Put it in a sentence (in a sentence you have actually said or in a sentence you’ve actually heard). What do you think about it? What was its intended meaning? What was its UNintended meaning?
In all of the examples I came up with in my own head, interestingly enough, I think the word “just” is like a fork in the road – using “just” in a sentence offers a truth to what is being said but when you remove it, *that* sentence offers another truth. My point – while both truths are likely accurate, they aren’t necessarily compatible.
Just a thought… *shoulder shrug (and a *little wink).
*Post 906
I’m Gonna Listen :: 9/27/17 :: Post 30
Where am I at today? I find that I’ve been all over…
The more that my independence comes back, the more moments I have of “is this really happening?” If I can do certain things the way I “used” to, then it feels normal. But if normal is relative and I have a new one every day, there is never really a stability in this. I find myself vacillating between “I want normal” and “I’m scared of normal.” The paradox is odd. The contradiction is strange. The complexity of the old transforming into the new is just weird.
It’s certainly uncharted territory.
Like today – I got my drains out. (PRAISE THE LORD OF HEAVEN!) Sweet freedom. I am no longer tied down to wearing a little apron everywhere I go that holds little bulbs attached to plastic tubes running through my body sucking out body fluid and depositing it in those bulbs. (Yes, ewww). I am no longer required to shower with a “drain necklace” as I had to pin the drains to a lanyard around my neck because them dangling at my sides was NOT an option due to the pain that would have been. I am no longer having to hold up that little apron to go pee…or figure out a way to put clothes on around the drains. I am no longer in constant discomfort because of the pain, pressure or itchiness they caused. Independence of those feels NICE. I also got some more fluid put in my expanders so I’m looking a lot more “normal” than deflated. I’m maybe a B now…it’s no D like I was, but it’s somethin’. And when I look down, I don’t get as depressed because the “holes” are a lot less obvious now.
The old is transforming into a new new. And it IS weird.
People have said to me, “You’ve gotta be feeling so much better now that surgery is behind you and that you know the plan ahead of you. It must be nice to get back to normal.” While I don’t necessarily disagree…I also really struggle to say, “yes, I feel so much better.” Because, well, I don’t. Not really. I have recovered pretty well and I can do more than I could a week ago…but again (and forgive the redundancy) what IS normal? And, yes, I certainly “know” a plan of treatment but I don’t know it at all. In light of this, I keep feeling this tendency to defend the “bigness” of this for myself. The difficulty in each part of this. That it’s just not getting easier with time or healing or answers or plans or whatever… That what lies behind is going to follow me my whole life and what lies ahead is all very much the same.
A friend reminded me today, my journey through cancer is like my journey has been through motherhood. There was a pregnancy, then a labor and delivery, then a newborn, then an infant, then a toddler, then a preschooler, then a grade schooler, then a middle schooler, then a high schooler, then life after high school, then… then… then…. And with each stage there is difficulty and newness and adjustments. At no point does parenting stop. At no point does it become easy and straightforward and formulaic.
Neither does this. In every way this has been a daily adjustment to the relative normal. There was a lump found, then an exam, then a mammogram, then an ultrasound, then a biopsy, then a diagnosis, then an MRI, then conversations about genetics, then decisions about a double mastectomy, then massive surgery, then final pathology, then oncology and tentative treatment plan, then CT scan, then bone scan, then results and actionable treatment, then port placement, then drain removal and post-ops, then physical therapy, then echocardiogram, then vaginal ultrasound, then chemo class, then chemo, then chemo week, then going to work, then selecting and buying a wig, then chemo again (and again and again and again and again), then going back to work, then radiation, then going back to work, then healing, then going back to work, then reconstruction, then life after cancer, then… then… then… At no point does this not hold a place in my life. At no point does it become easy, straightforward, and formulaic.
As independence returns a little more each day post-surgery, it feels like it comes with strings attached. Strings that mean expectations that I have NO idea if I can fulfill…. Life expectations, relationship expectations, parenting expectations, work expectations… it tough to be in a place of such instability. It makes me apprehensive as to how I’ll walk it.
But even as I typed that, I am reminded of all that I’ve already learned this year – the only place I am is where my feet are (my friend says that I LOVE it). So, I continue to walk only where I am and I must acknowledge that space FOR ME, not for what I think it should be or what I think others think it should be or what expectations I think exist in that space or what expectations I think others have.
I’ve taken a Valium and the sleepiness has hit like a brick wall. I am not even done with what today was but my body says I’m done. So I’m gonna listen.
Even When It’s Good News :: 9/27/18 :: Post 379
Today was a big day, indeed.
Pathology reports came back clean. I did have a couple of tumors and several cysts (all of which have names so there is some significance in that) but they were all benign. So, no evidence of additional cancers and my new doctor told me today that after one more post-op next month, I can officially fire him. I liked that. This also means that Monday’s chemo is really my last chemo. And Monday’s appointment to have my port removed can still be Monday’s appointment to get my port removed. I’m relieved those milestones didn’t have to change.
This is all certainly something to celebrate. And I am. And I’m grateful. And, praise the Lord.
But since I’m an honest person who values authenticity, I can’t ignore other things I’m feeling.
That said, it’s really hard to describe those feelings… am I still bracing myself? I shouldn’t get too cocky, right? Am I scared to celebrate? Do I feel too bruised from this past year to truly be celebratory? Am I foolish for not feeling more happy? Why don’t I feel more on-top-of-the-world? Is it just too new of information and it just needs time to settle in? Is there something wrong with me? Am I hesitant to party because I know a few more things lie ahead?
Is this what survivorship looks like??? Celebrating victories but always looking over my shoulder?
This is hard. Even when it’s good news. And that’s a hard sentence to accept.
(And no word on the inspection yet, so, we do what we’ve done so much this past year – we wait.
Between Memories and What-If’s :: 9/27/19 :: Post 742
Mo, I miss you. I loved getting to celebrate your life and legacy today at your service…with many many friends and your sweet family.
It was strange being there, though. I have so many confusing thoughts and feelings and my heart is heavy. Interestingly enough, I wasn’t very emotional during your service…I few small tears welled up in my eyes while your sweet family spoke of their deep love for you and while Ayinde sang beautifully to honor your life…no doubt those were sweet moments that definitely brought emotion with them…. But all in all, I found myself pretty stoic.
On the day that I found out you were declining fast and it was mere days or hours that you had before taking your last human breath, I felt odd. I couldn’t really find the words to capture my feelings and “confused” is the best I have been able to come up with…. And I walked in that confusion over the past few weeks, through the day when I found out you had died, the days following and even throughout your service today.
As I got into my car after your service and reception were over, though, I totally lost it. Everything I had been holding, the experience of knowing you and walking with you in our cancer bond, the joy and the grief simultaneously held, the reunion with so many amazing Alternatives friends…it just let loose and I sat in the parking lot of Grace Chapel and cried. A lot. And I think some of the fog of confusion started to lift and clarity began to set in.
We are all going to die at some point….that’s just how this side of heaven works. Of course, it won’t work this way once Jesus returns…but for now, that’s the way it is. Death is a thing. And I knew this even before cancer hit my own story. But I didn’t really know it. I knew of the possibility…but I lived in a space where it was just so far away, it wasn’t anything I needed to spend my time or energy thinking about. And then I got the call…just 10 days after a huge car accident…uncertain about life or death or living in the space between. I say all of this because I think cancer has given me the opportunity to look at the reality of death so differently. It’s not by watching a family member or a friend die, and while that is heart-wrenchingly hard, it’s not the same as when you have to look in the mirror and say, “My last breath could be my next one…” Anyways, I realized something today at your service – when I had to look death straight in the eyes, I saw life reflected differently. It seems odd to say it, but I now live to die. There is a space between birth and death, however long it is. And that space can be filled a multitude of ways. Cancer is teaching me to fill that space as if it is my last. And not just in the cliché sense of the sentiment. Today at your service, I realized that funerals feel different now having had this opportunity. And I also realized that I think you knew more about when you were going to die than what you let me in on. I remembered today that you never did tell me what stage they diagnosed you at. I remembered today that you never actually answered my questions regarding prognosis. I remembered today that you always had a response that was just vague enough to leave out what I now think you knew all along. And I think you lived these last 7 months knowing how close death was. You lived a beautiful life, Mo. And you lived a beautiful death. And I loved knowing your human self. I hate how cancer took you but I love how cancer bonded us. You were such a cheerleader for me when I was diagnosed and I experienced a side of you that I hadn’t before. And I’m so grateful for that. And then I became your cheerleader after you were diagnosed. Our language became the same. We knew. And this bond, I cherish deeply…crazy as that sounds.
I also think I wasn’t super emotional during your service today because, well, cancer has changed the way I see time. Time is weird when you look death in the eyes. Time holds a different space. Time slows down to the stickiness of molasses on a cold winter day while at the very exact same moment, it is as fast as a bolt of lightning. I’ve learned I cannot hold anything too tightly because as soon as it is lived, it becomes a memory and memories fade. I find myself having a far deeper understanding of what it is to live in the space between a memory and a what-if… As I sat at your service today, knowing full well that together we will dance with the angels when I see you again, that ‘again’ isn’t so far off. Even if I live here on earth another 50 years. So, I didn’t cry.
But on that note, I’m finding myself kind of jealous of you. And this is the one that is most confusing to me of all. There were nights upon nights where I begged Jesus for the relief of heaven. Where I couldn’t imagine another moment of agony and of living. Moments where I was desperate for death’s mercy. Moments where I hoped my next breath was my last and when I’d open my eyes to Jesus’ face. I’m jealous of you, Mo. And it’s perplexing to feel this way because I want to see my kids grow up and I want to walk with them through life and I want to experience all of the “what-if’s” and turn them all into memories and I love my husband and my family and my friends. I do. I battled cancer so that I can live out what it teaches and I want to live richly and deeply. I daily choose to live through hard things and learn new levels of resilience because of this battle. But all of this is hard. Earth is hard. Surviving is hard. Living changed because of cancer is hard. And in many ways, my heart feels like surviving is harder than battling. It feels so wrong to say all of this out loud because it’s not likely going to be heard very well, but my heart wrestles with this paradox. The joy that awaits is so enticing…but there are things here on earth that I am left here to do…hard things that make me wish for dancing with the angels. Mo, my intention is not to make your death about me…but as it turns out, survivor’s guilt is maddingly confusing and the reality is, when you say goodbye to someone, it makes you look at your own life through a new lens. And maybe this all means that I, too, can live a rich and deep and beautiful death as I live every day as it could be my last.
My heart is heavy tonight. It is full with a myriad of conflicting emotions. Joy, peace, resilience, faithfulness, preparedness, confusion, anger, sadness… I will sit with it all and know that Jesus loves me in the midst of my broken mess and that when heaven comes, He will hold a whole me and I can hug a whole you again. Love you, Mo. So much.