I was going to write yesterday but I just didn’t feel like it. I had a bad day…..and today has followed suit. Ugh.
I am stuck in skin I don’t want to be in, claustrophobic in my own body. I was telling a friend that today when she checked in on me and I so appreciate her encouragement back. She said, “I’m sorry. That’s a battle. And it’s okay to be weary in the battle.”
I appreciated what she had to say in response to me because it recognized several things: 1. The battle doesn’t end when treatment ends. Yes, battling cancer is definitely in the treatment, in the one foot in front of the other in some of the worst days to have to exist, in the trauma of literal death to save life, in the ‘so close to heaven I can taste it.’ Yet, 2. The battle is also in surviving. It’s weird. And weary. And unseen. And confusing. And unpredictable.
And the other thing I SO appreciate about her response – she didn’t give in to the temptation to say (or even insinuate), “at least you survived…just be happy about that.”
Here’s the thing – I am happy to be here. I enjoy living this life with my people. I love learning about how to be my best me. Yet, there isn’t a day that I don’t have cancer with me…my kind of cancer, anyways. I can’t and won’t speak for other survivors, but my cancer took things that I miss and it left things behind that color every.single.step (literal and figurative) that I take. And the reality, whether it’s selfish sounding or not, is that heaven would have been easier. . .
So, there are days where the battle of surviving takes a toll greater than the joy of it can offset. Where the sluggishness of weary steps is hard to balance even though there is much about the ‘me-now’ that I like better. Where I just lay down in my bed and stare off into space because thinking, processing, writing, being is just too hard. Too painful.
Grateful for those times where I can simply check-out. And I’m even grateful for the times where I can’t stay there even though I want to. Like tomorrow, back to work and into the crazy schedule of April. Because while weary, claustrophobic and edgy, surviving means living. It means showing up. It means doing my best. It means doing it all on purpose.
*Post 1094
Posts from April 2-5, 2018
Posts from April 2-5, 2019
Joy and Pain :: 4/2/18 :: Post 208
Family photos. Blueberry muffin crepe and a latte. Breckenridge sweatshirts. Watching my girls ice skate. Family Mario Cart. Eric’s Famous Pizza. Cribbage with the hubby. Coffee ice cream with Heath Bar. Laughter. Smiles. And family.
A great day. A busy day. A day that brought wonderful memories and a day that was celebratory of family resilience. Interesting that after the happy day we had, I find myself in a bit of a funk and feeling emotional….
I don’t like bacon anymore. What is that crap!? My fingernails are half gone. And for those that know me….that’s really sad. And they hurt. Bad. My radiated skin is blistering and peeling. And that is a special kind of pain. Getting my right tissue expander filled up last Thursday was wonderful and extremely painful all at the same time. And my muscles cramp all of the time. I’m getting way more comfortable going out without a wig….but man do people stare. I can see the wheels turning….
It is an odd place to be where I’m feeling longer moments of normalcy and then I get rubberband-snapped back to the harsh reality of the battle still being fought….a not-so-gentle reminder of the brutality of cancer.
Interesting to hold both the joy of the day and the celebration of important progress with the sadness and pain of a continued battle.
Can This Last Forever? :: 4/3/18 :: Post 209
Our last night in Breckenridge. Sad. Is been a wonderful respite from the chaos of life…I’m grateful to have been given this gift. And I got to experience a spa massage today. Whoa. That was…ummmm…amazing. 🙂 I may have to do that again someday. And it was so nice being able to lay on my stomach again…it’s been a long long time. 🙂
I’m feeling super nauseous tonight and am just gonna go to sleep. Tomorrow is tubing for the girls in the morning, heading home and then another doctor appointment in the afternoon……
Respite can only last so long, I guess.
My heart and soul are full and we are all re-energized for the continued battle. And I’m grateful for that.
Live Changed :: 4/4/18 :: Post 210
I had an appointment with my plastic surgeon this afternoon and while I was driving there, I was thinking about where I am today in comparison to where I was early on in this journey….
We left Breckenridge this morning and the whole reason we are able to enjoy the last many days was because I have cancer. A whole group of people got together to sponsor this trip for myself and my family….because I have cancer. An entire non-profit organization exists to create these respites for people….because they (I) have cancer.
I had a strange moment today where I was grateful and resentful at the same time. Cancer has taken so much. It has hurt. It has broken. It has changed.
I want to live changed.
This phrase got me today while I was driving. What does it mean to live changed. What does it look like? What does it feel like?
I know much has already changed but as I begin to feel more normal and less sick, I want to acknowledge that my normal is a changed normal…I am not, nor do I want to be, the same as I was before this.
Being on this side of the hardest part of this cancer journey is odd… I’m still in the middle of it and it is far from over and it will forever be a part of my story, but the most dreaded part of having cancer is now in my rear view mirror. 80% of my treatment is done. The death of chemo and radiation are over. Now we talk reconstruction. Healing. Prevention of recurrence.
My appointment today was a consult with my plastic surgeon today to discuss my surgery. It was so interesting being there today after so much has happened remembering being there before so much was going to happen.
He assessed the damage radiation did to my skin, we talked options, we looked at pictures of other women who have walked this path before me…he has been a part of so many cancer stories. And while I was there, he said “congratulations” several times.
It felt weird hearing it. It is a strange acknowledgement to accept it. And it has stuck with me most of the evening. Congratulations.
That word is said at weddings. Graduations. Promotions. New jobs. Good grades. Won championships. Big accomplishments. And I guess it fits within a cancer journey as well.
Part of living changed is accepting how far I’ve come and what I’ve accomplished. Part of living changed is allowing myself to reflect on where I’ve been and what this all has meant. Part of living changed is hearing “congratulations” instead of “I’m so sorry.”
That’s today…. I wonder what tomorrow’s will be.
Practice :: 4/5/18 :: Post 211
Live changed today: I practiced having peace in the unknown. I practiced not letting work consume me. I practiced listening and hearing hard things and just holding them without expectation for resolution.
I didn’t feel well most of the day….I wonder if it’s this “easier” chemo. I’m going to pay attention to next round and see if the not feeling well lines up with where it has in this current round. I vaguely remember having a few days last round where I wasn’t feeling too hot, either….
I still battle. I’m still battle-worn. I still wish I didn’t have to battle. But here we are. I was emotional today. It was a hard day. It was a long day. It was a day where I practiced living in hard change.
And tomorrow there will be more.
Monster :: 4/2/19 :: Post 567
I was laying in bed this morning, slowly waking up, and I noticed my right thumb was hurting. It was really stiff and it hurt to move it much at all.
I looked at it and it sort of looked like a bruise…it also sort of looked like a spider bite. I wasn’t quite sure but I definitely did not like how it felt, that’s for sure.
And then the cancer monster dug its claws into my heart. Literally the thought, “I wonder if I have bone cancer and this is the small start of a tumor?”
Irrational? Yes.
Do I really think I have bone cancer? No.
But this is survivorship. The monster lurks and rears it’s ugly head whenever it wants to – not caring at all the upheaval it creates, the fear it elicits, the pain it causes.
Light :: 4/3/19 :: Post 568
I had a good day. Counseling was so good. Work was productive. Facilitating a grief and loss group for work this evening was so beautiful. But….it’s late. I’m tired. I’m not feeling well.
If I was asked to choose one word to describe my day, it would be “light”.
Light shines in the darkness of cancer by the gifts I can acknowledge because of it.
Light was shown on some things today at work that were necessary to address.
In the midst of intense grief and loss, the women in my group are seeking light and healing in their stories. And they bring such beauty.
Light…..
Dark :: 4/4/19 :: Post 569
Hope is hard to sustain. I feel like some days I have a solid grasp on it and then there are other days where it feels like it is so out of reach.
Tonight I sit in the dark. (Interesting that my word for yesterday was “light”…)
I feel a heaviness, a despair, a sadness, a weariness. My body hurts. My heart, tired. My soul, frustrated.
Ire :: 4/5/19 :: Post 570
Tonight – I’m angry.
It’s not like scream-in-a-pillow-punch-a-wall-throw-something-across-the-room-mad.
It’s like a wordless ire.
(No posts for 4/2/20, 4/3/20, 4/4/20 & 4/5/20)
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💛💛💛 back.