Learning to live

This past Thursday I had surgery to remove the chest port + catheter into my neck. Taking the port out means my care team is as confident as they can be no further treatment will be needed to fight HER2+ breast cancer.

As with everything in the space of cancer this should be a milestone worth celebrating, which it was. It is! No more looking at a 1 inch wide, 1/2 inch deep disc sticking out from my chest and a tube running visibly into my neck. No more questioning every single shirt I wear because the port will be visible. No more carrying a card in my purse and on my keys stating I have a chest port in case of an emergency. No more having to state at every appointment – medical, massage, acupuncture, etc. – that I have a port and to please avoid the area. So many things to celebrate about the port being gone!

The very port that was removed after serving me so, so well on this journey

…but I also had the voice in my head constantly questioning if it should stay in just in case leading up to surgery day. Yet another situation where I wish I could tell the voice to shut the hell up and let me enjoy the moment!

As I have recovered the last couple of days I keep finding myself asking so many how questions.

How was this procedure the third time I have been put under anesthesia and rolled into the operating room in just 13 months?

How was it a year ago this month I shaved my head?

How was it a year ago today I shared on social media my diagnosis after keeping it mostly a secret from everyone for almost three months?

How has it already been a year?

How has it only been a year?

How is this part of cancer still scary?

How is it I have so much community but feel like I am on an island?

How am I still thinking about cancer so much?

How does one ever fully get past this?

How do I stop worrying?

How do I trust my care team and their decision to “cut the cord” and set me free from all this with the exception of monitoring? (Note: I do wholeheartedly trust my care team, truly)

How do I navigate a new normal after cancer is all I have known for a year plus?

July 2021

Here’s the thing, as we drove to the hospital to get my port out all I could think about was how I felt driving to that same hospital to have the port placed in June of 2021. I was so scared making that first drive to the hospital. I had never had surgery like that before. I was going straight from port placement to the cancer center for my first round of chemo. I had cancer. The deep, deep fear is something that I think will forever give me chills when I step back into those feelings.

…and while heading to a hospital for surgery will always induce a little bit of nerves, I was so thankful to not be absolutely terrified this time. I walked back into surgery prep like an ol’ pro. I knew the drill — urine sample, gown + hospital socks + hair net on, IV start, anesthesiologist coming in to do an airway exam, surgeon comes in to talk through game plan, OR nurse comes in to wheel me down the hall, the bright lights and sterile room bring an odd peace, scoot from my bed onto the operating table, oxygen placed in my nose, anesthesia hits my system, and….

The nurse wheeling me to/from the operating room said, “You look so familiar!” I told her this was my third rodeo, and as she remembered our past interactions she congratulated me on a battle well fought.

Coming out of the anesthesia fog I apparently ordered myself a snack, carried on full conversations I do not at all recall, and heard from the nurses how much hair I had since I was there back in September for my lumpectomy.

July 2022
Just home from port removal

I am always, always excited to leave medical facilities, but if I am being honest leaving them on this side of the journey has become progressively harder for me. These places and people are my safe space. They are my comfort.

I just finished a book (which I will be sharing more about sometime soon) written by a gal about my age who journeyed through cancer. As I was reading it I folded the page where she wrote about her port removal, and what do you know? Being on this side of it I could have penned the exact.same.sentiments.

I wake up in the recovery room. My nerve endings bristle and tingle as I rouse from the twilight. Lids fluttering open, pupils rolling around the room like marbles. Then I see the bandage on my chest and remember what has happened. Instead of relief, I feel bereft at the loss of my port – at the thought that now my visits to {the medical facility} will be fewer and farther between, that I won’t get to see my favorite nurses and doctors as often. The sadness is the start of something too complex and discomforting for me to parse quite yet. So I chalk it up to the aftereffects of the anesthesia.

{Others want to celebrate, which I agree to because deep down I want to as well.}

When others ask what’s wrong when I get a bit quiet I say in response: I’m fine.

What I want to say but don’t know how to articulate: My port has been removed but it’s not gone. Its absence is a new kind of presence, a realization of all the other imprints of illness with which I have yet to contend. The ravages of treatment on my brain, my body, my spirit. The terror and utter confusion I feel about what to do next. After {over a year} I am officially done with cancer. I thought I’d feel victorious when I reached this moment – I thought I’d want to celebrate. But instead, it feels like the beginning of a new kind of reckoning. I’ve spend the {last 15 months} working tirelessly toward a single goal – survival. And now that I’ve survived, I’m realizing I don’t know how to live.

Please know as you read this blog I am ok. There are physical, mental and emotional challenges, yes, but I am ok. I have been honest every step of the way, and on this side of the journey I plan to be no different. I think it is really important to share both the joys and struggles of these pages I am authoring, too.

From the bottom of my heart, thank you for journeying with me through all of this.

…and thank you – in advance – for keeping me tucked into your prayers as I tackle the next battle of relearning how to live. It sounds so easy, and I pray each day it gets easier than the here and now. I am so grateful to be standing here looking onward at the rest of my life. I absolutely know what others would give to be in my shoes, so I do not take this next chapter for granted. Just know I will likely need a hefty dose of patience and grace as I step into this new space (and I promise to return the same to others as I simply cannot expect anyone to understand this next piece of my journey).

Until next time, my friends.

5 thoughts on “Learning to live

  1. We love you, Sarah, and you will continue to be in our prayers as you move forward living life to the fullest!

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  2. I’ve been a nurse for a long time. I have to say that I have never heard/read a patient perspective so beautifully articulated. Thank you for blogging your journey.

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  3. Of course you know how to live, Ms Sarah!! You are breathing with an attitude of moving forward.😀🌻
    Let me know if I can ever help.🥰

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