Not the Post I Wanted to Write
May 20th, 2012
I imagined that after a week of resting and recovering from my last surgery, I would compose a blog post full of gratitude.
In my mind, I played with how I would balance expressing the humble appreciation I feel for all that has been done for me and my family over the past 2 years, 7 months and 11 days since that awful day I received my diagnosis. I fretted because I knew may miss some of the generous gestures that may have escaped my memory or notice.
To be sure, I am grateful. Unspeakably so. I will spend the rest of my life graced by the knowledge that friends near and far, colleagues, kids’ friends, neighbors, classmates, fellow congregants, community members, mentors, acquaintances, and even strangers came through with uncountable kindnesses.
I want to tackle that writing problem. It seems gracious and puts a nice bow on things.
But I am overwhelmed by a less warm and fuzzy set of issues.
I should know this emotional terrain by now. Whether the end of chemo or radiation or whatever, these finish lines in treatment seem to vanish like mirages when I actually close in on them. They have always been fraught.
We focus on them, fantasize about how they will mark a fresh start, a new beginning.
They may be markers, but they do not operate so cleanly. In reality, we are damaged, compromised, and our lives are filled with incomplete and long delayed projects. Chaos has entered our lives. Where do we begin picking up the pieces?
Photo by Micke W.
There is no pause button in my life. Everything rolls on, even as I try to heal. My work projects move forward, with crises, deadlines, and important decisions. My children and husband need me –– there are carpools to coordinate, conferences to have, problems to solve, finances to refigure.
I want to take stock of the damage these past years have brought, to clear out some of the mess so that I can figure out where to begin anew.
Photo by Xorlaryn
But, once again, I am lost.
Where do you start?
How do you find the space to deal with the chaos cancer brings?
This entry was posted on Sunday, May 20th, 2012 at 11:23 am and is filed under Survivorship. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Holy crap – how did you put words to what is going through my mind? It’s terrifying….and, so good to know I’m not the only one. I have no words to help you through; just know that you’re not alone.
i will take the comfort of not being alone, michelle. it’s a start… xo
You took the words and thoughts right out of my mouth on this beautiful Sunday – 3 days after my final chemo session. I am supposed to be feeling grace, gratitude and relief, but instead am stuck in a maelstrom of self-pity.
I’ve decided I will never feel well and whole until I have a reasonable cap of hair on my head. How shallow is that?
I’ve been through this before – a breast cancer diagnosis 19 years ago – and know it will get better. But not as quickly as we’d like
.
Hang in there Chemobabe – you are not alone.
Joan
Shallow? SHALLOW? I am actually contemplating eyelash extensions, because my hair has grown back but my eyelashes are still dishearteningly sparse.
It is so awful to feel robbed of ourselves.
Thanks Joan.
I have also contemplated eyelash extensions… But a friend of mine told me about the terrible migraine headaches she got from them… Something about seeing the eyelash out of the corner of her eyes and then her vision refocusing all the time. Doesn’t sound worth it.
Oh, CB, how well I can relate. A few years ago, in a post about this, I wrote about how I longed to return to feeling like the architect of my life, but was still stuck feeling more like the archeologist of it instead, digging through the mess and trying to piece it back together. Sigh…
Occasionally now, I feel more like an architect, but I’m still digging my way out more than I wish I had to.
I haven’t acquired any magical wisdom about this really, except to be patient with myself, which is often the hardest thing to do.
Gentle hugs & warm thoughts to you, sweetie.
Kathi
I kind of feel more like the biohazard clean up team.
Is that bad?
Love to you, Amazon.
YES! Where’s our Hazmat suit??? I’ll take mine in purple. Anything but pink! xoxo
Brought tears to my eyes…..
I swear the scariest part is crossing that final finish line of final treatment or final procedure with nothing left on the horizon but checkups. You seem to have time to think about everything and push for normalcy, but we all come out different than we went in. I wish you only the best as you face this part of your journey.
I think it’s the expectations. Mine and other people’s. I don’t even know how to answer the question, “How are you?” Because I feel like I’m letting people down by saying, “Still healing, more slowly than I wish.”
Lani,
I hear you. Boy, do I hear you! Cancer changes things for good. It just does. Those of us who’ve been through it, know it’s never really over and that’s why these “finish” lines, though important, aren’t really “finish” lines at all.
Day by day, that’s how you start dealing with the chaos. Trite but true. Hugs.
Day by day. Okay.
I think I can, I think I can…
Thank you for sharing this beautifully articulated post. You are spot on my friend. It’s when the surgeries and chemotherapy treatment ends that we find ourselves sitting amidst the bombed out shell of our former life. Tasked with the job of picking up all of the pieces and even worse – feeling like we have to do it alone because the rest of the world has sailed on into our recovery assuming that the carnage is long over and we must be tickled pink to be done with cancer. I am here if you ever need to vent, rage, or cry about the task of juggling the post-cancer clean up amidst all of the other responsibilities of life. It is bloody difficult, but eventually we all muddle our way through. Big big hugs from Peru my friend and oh how I would love to figure out a post cancer adventure that would fit into your life and bring a little light. Maybe one day. I’ll be back in North America at the end of June and would love to connect properly! Terri xo
Thank you Terri. I am definitely muddling… Thank you for sharing your Adventure of Hope. Hugs to you in Peru!
I am astounded by the direction you take on an issue – amazing and fascinating. I am a kind of one-note person (although the one note is actually more like a chord). I believe all of us need the ‘natural’ approach to get ourselves back (whatever ‘back’ is). That is to strengthen our immune function/our body with natural foods, herbs, physical movement, detox, and a conscious effort of relaxation. We get our bodies and our minds well slowly, over time, but THEN, WE WIN. Not the cancer.
PS I am not a gratitude type at all.
I am truly, truly grateful. Truly. Once I manage to get to the post where I share all that has been done for me and my family, it will make sense why.
Cancer doesn’t permit you to pick up the pieces and put them away in a nice neat little basket as they were before. You cannot reassemble your life into the same myriad of puzzle elements forming the same picture. What you can and should do is bulldoze through the crap and create a new picture – a new puzzle. And while the puzzle of your life may look different than it had before it does not need to be less than what it was. The notches that lock the pieces together might be shaped in a new way, but they still can form a beautiful image.
I like this image. I will work on thinking of it this way. Maybe it’s a mosaic of shattered pieces?
There are times when I can’t find the space. All I can do is cry and be overwhelmed. . .and then that cloud passes (for a while at least, with increasing intervals) and my mind wanders, life creeps in, and I occasionally forget. That’s the best part.
But appointments, scans, treatments all have a way of bringing back that freaking clouds. So I cry, and worry, and write. And then life somehow moves on again without announcing the change.
Thinking of you in this hard patch. Keep sharing, cause maybe it makes this part a little easier?
Yes this sharing. This is my best way of healing.
Oh I understand. You are not alone! I’m just reaching the point where the doctor’s appointments are few and far between. While I’ve been told by other survivors that this is never really over, I am feeling that now more than ever. Definitely entering a new phase of this process and need to learn how to manage it. No great answers yet, but if I come up with anything will let you know!
Yes. Let’s keep sharing… Maybe we can crack this nut together…
Tell me about it! I felt like i just recovered from my Stage 1 Diep, then Stage 2 was upon me (last month) and tomorrow my husband leaves for a year in Kabul (3 kids at home). I’m still not sure I’m completely healed and yet I go into only parent mode for the next year whether I want to or not….Frankly, my catharsis is just to blog, blog, blog..hope that helps you, too!
Oh! and you had that EPIC block from the State Department, right? For the nipple cozy post??
Stay strong, mamma.
Dear Chemobabe,
I am attempting to create order, or at least peace, through meditation and visualization. But to be honest, it often doesn’t begin to touch the inner insanity I feel, and feel I must hide.
Have you read Victor Frankl’s “Man’s Search for Meaning”? I did, years ago, and believe it’s time to do so again.
In the meantime, as so many here have said, you are not alone. And you are loved. May that knowledge help just a bit and help create a ray of hope that grows larger by the day.
Lori Hope
Lori, I appreciate your honesty. I so wish I could be om-zen about everything. But this cancer chaos is a whole special kid of thing isn’t it?
I am grateful for your kindness and love. Thank you and I send it right back to you!
Very well written piece. And I appreciated the rich comments, too. It would be great to have time to reassemble the pieces of our shattered lives into a glorious mosaic of new normal, but, as you have said, life keeps tumbling forward. And as many of us have found, just because we have dealt or are dealing with cancer doesn’t preclude other catastrophes befalling us. Love you all.
argh. that is so so true. i will never forget finishing a horrendous too-long chemo infusion and going to the hospital garage to find that our car battery had died.
yes. crappy + crappy can happen.
Sigh. Oh yes, this is so familiar. Even though I have not gone along the reconstruction path, I do also share that sense of exhaustion and weariness. How do I not just pick up the pieces, but get that spring back in the step? I guess that half the battle is acknowledging and working with this. All strength to you, and if you find the secret to finding that sense of healing and resolution.
P xoxoxox
i promise if i find the secret you will be among the first i share it with!
Oh Lani, for so many of us “re-entry” is the hardest part. As a group facilitator, it is the most common entry point for survivors. When we are first diagnosed we are too busy to take stock. When we are in treatment, we are too tired to take stock. The problem with being done is the EXPECTATION we take stock.
Only another survivor understands that it takes time to rebuild the life of the still-nearly-bald, cut and burned woman in the mirror. And even then, there are days when she would feel safer to remain the ever-vigilant cancer patient.
It took you two years, seven months and eleven days to make this journey. Maybe more than a week to get to your next milestone is far? Be kind to you!!
oh lori. this is so, so wise. yes of course. if it has taken me this long to get to this point, WHY do i feel so impatient about getting past it? thank you!
xoxo, mommy. you’re doing your best!
I feel you! Sometimes I just want to stomp my feet and scream, “It’s not fair”. But then, I remember that I’m a grown up and I’ve just got to suck it up and deal with it. One. Step. At. A. Time.
Don’t try to conquer the world. Just get your teeth brushed and call that the success of the day.
I blog too. Today I came up with: Let go and BE. It’s my new mantra.
Beautifully honest post. This line says it all: “these finish lines in treatment seem to vanish like mirages when I actually close in on them.” Boy, is that ever the truth. Cancer feels like we’re running races with vanishing finish lines because we never are finished — physically and/or emotionally.
Thank you for sharing the truth about cancer that rocks us all to the very core.
Wow, Lani, in my ill-informed humble opinion I’d say you’re being too rough on yourself. Women who have been faced life-challenging or changing illnesses still find themselves in the same place for different reasons. I think we all do – granted the base reasons vary in severity, but we’re all human. Think about all you give to so many every damn day. It’s ok that you’re snowed. It’s even more ok that you acknowledge or even whine about it. It’s healthy. It’s good for you. And you have a lot of folks happy to listen to you and support you in any way they can. I know I am. Hang in there, Sweets, I believe in you. (I do know, of course, that sentence won’t do your laundry for you or pull the weeds!) <3
Cancer does cause chaos. As Beth says so well, the truth about cancer rocks us all to the very core. But we go on. We must. Keep writing. xx
Mazel tov on finishing treatment and yes, there’s often an unexpected and unwanted emotional mine field waiting on the other side.
The book that was my lifeline during those months of I-should-be-grateful-why-do-I-feel-so-shitty was “Dancing in Limbo: Making Sense of Life After Cancer” by Gelnna Halvorson-Boyd and Lisa Hunter, both cancer survivors. They weave their own stories with those of other cancer survivors, mapping the emotional terrain of life after cancer treatment ends. They helped me to realize that I wasn’t losing my mind, that what I was feeling made a lot of sense, even if it wasn’t much fun.
May you find ways to be gentle with yourself as you walk through this next phase of healing. It DOES get better.
love,
Sue