No more Ironwoman.

In this post...

  • No More Ironwoman

  • When Breath Becomes Air

  • #SpicyStrong Army

I miss my "normal" life. The worst physical problem I had to deal with in recent times was screwing up my pinky toe. Don't get me wrong, it hurt reallllll bad. But now I wish that's all I was dealing with day to day.

I feel great. Then terrible. Then pretty good. Then bleh. Now meh. It looks something like:

This blog has had 17 different "intros" because that's the number of times I'd start this entry only to hit a wall (usually fatigue). So. Many. Times. The days leading up to my next chemo cycle = closest to my “normal” energy levels so I'm supposed to be at my best right now because I start Round 4 on Wednesday.  

No More Ironwoman.

...unfortunately, my chest is hurting a lot and bleeding after Friday's two mini-surgeries (yes, the stupid thing billed as a “godsend” became infected). They finally took out my port which is why, happily, I am no longer "Ironwoman" with that foreign chunk of plastic or whatever in my chest. My arm has a PICC line in it once again. It’ll require more maintenance but I am so happy because the port has been a big problem since some interventional radiology fellow or maybe intern put it in me a couple months ago. It never felt right but I went with the punches only to have it swollen essentially the entire time. The sutures didn’t heal right and kept bleeding.

Imagine waking up to blood everywhere on your chest or seeing a bubble of fluid pop up overnight under your sutures. Check. And check.  How does that happen, you ask? Well one part of it took place a couple of weeks ago. A nurse putting in the needle for my chemo used the wrong size so it ripped my skin overnight. 

Hence, the lovely infection. Now I have to go into a different hospital so they can pull out a foot-long strip of medicine-infused cotton that's stuffed into my open wound (literally, they shove it in) to help with the remaining infection. This happens at least twice a week for at least a few weeks and I am dreading it. I wasn't ready for the procedure today and saw the bloody strip come out. Worse than that, I felt the whole thing happen and it hurts worse than sticking a needle into my stomach. 

Tears started pouring out of my eyes. I wasn't expecting to see the gore, feel that pain, and I think I just hit my threshold. I'm not proud of the reaction. I don't even think I realized just how badly I felt until a nurse named Karen standing at the foot of the hospital bed said, "Honey, are you okay? You look horrified."

Humans are resilient (going to post about that later, hopefully) but there's a limit to everything. I've learned to embrace the sadness, the anger... and then move on. This is something I heard a lot from Tim pre-cancer: be honest with your emotions. I appreciate having heard that beforehand because it makes it easier for me to live that now.

And here is he brightening up my days at the clinic during chemo infusion, picking up my prescriptions, organizing my pills, and making me cookies haha.

The day to day pain is all fine in the big scheme of things but I really needed to not have to deal with this funk in between rounds. Week Three is supposed to be my week. It’s when I recharge so I can fight what will inevitably be a tougher next-round of chemotherapy. 

It has gotten harder to write as time goes on. Oh, and harder to write well. Words don’t come to me anymore. The cumulative effects of the chemo make me tired and nauseated faster with every new cycle feeling steeper, rougher, (insert bad word here), and on and on and …

So this is a post I started writing a few weeks ago, before the elopement and maybe just after the second round of chemo. Admittedly this was probably when I had most time to think. Dwell. Linger on the stuff I’m supposed to leave untouched. Death, prognosis, yada yada yada.

I thought that there wouldn’t really be anything new/exciting/interesting after the first couple of chemo rounds because… what else would there be to learn, right? 

Actually, almost every day it feels like I have to absorb something else. Mostly side effects, sometimes anxiety and needless worry. Honestly, it gets harder to maintain that ever important positive attitude, especially when I’ve had a lot of bumps in between the big stuff.

At least I’m halfway through this treatment. In about three weeks, I’ll undergo my first comprehensive PET/CT scan to see how the cancer is responding to the poiso… I mean chemotherapy. I can’t even begin to think too much about that or I’ll drive myself (more) crazy.

Ok, rewinding back to my original post that was never posted from over a month ago! I highly encourage you all to read When Breath Becomes Air, yourselves. You won’t regret it. (I think I just read some headline saying Bill Gates agrees.)

When Breath Becomes Air

There’s been something on my mind lately and it has occupied way too much of my mental capacity during the last week. Mortality. Mine, others’, and more specifically, just the fear of what it means.

And all the while… the chemo pump continues its damn breathing. I mean, I’m glad it’s working. But sleeping with this purring at night is really annoying. It makes me feel like a robot getting oiled with toxins so that I’ll lose the battle but win the war. 

One recent highlight: the book When Breath Becomes Air.

It’s amazing to me just how much I’m impacted by one written line, and then in aggregate, what I walk away feeling from one book. I’m so glad I finally read the piece by Paul Kalanithi, a Stanford neurosurgeon who died from Stage IV lung cancer in 2015. 

It’s not a long read. But it’s a damn good one. 

And though I’ve spoken with multiple cancer patients and survivors, reading his words really engrossed me in the battle of cancer in such a different way. Cancer became an out-of-body experience for these few hours of reading.

There he goes writing about how he went from doctor to patient, from feeling in control to being told what was out of his control (almost everything).

And then suddenly, it’s the Epilogue written by his wife, Lucy, and I start to bawl. Not just cry tears, but these uncontrollable sobs are coming out of me as I reach for tissue after tissue.

Why would this man’s death rock me this hard? 

I knew before I read When Breath Becomes Air that Paul died while writing the book. I knew his wife wrote the last part. I knew all this. I’m shocked still at how stunned I was when I realized his writing was done. The language, the wording, the perspective that I had just begun to move along with... were all done.

So again, why did his passing feel like the proverbial punch in the gut?

Then I realize Paul had become the protagonist in a story too many of us have had to live day to day. He was the guiding voice in what has become a tough “schedule” of living, but he wrote so beautifully and with such inside knowledge that it became an instant comfort. I surrendered my own thoughts as I listened to what Paul had to say and went where his words carried me.

He was the protagonist. Is the protagonist. He’s supposed to defy the odds - at least until the book is finished. Right? This is his work. The fact that he leaves so abruptly felt like I had lost a dear friend.

I think that reality of his rapid decline smacked me harder than I could have ever anticipated. He dedicated his last words published in the book to his newborn, Cady. Boom - Epilogue, written by his widow. 

It’s true that it really reflected the rapidity of his decline and that he fought hard to get quality writing out while he could. And at the end of this… I was left thinking about something I’ve tried so hard to keep at bay.

Mortality is something I never wanted to confront. Now I think about it just about every day.

My army!

You all are my saving grace. I continue to get well wishes and pictures of the #spicystrong army. This is what keeps me going.

That love and spending QT with my family + friend = the best fuel I could ask for. 

My bff + her husband surprised me with a visit last weekend so we surprised him with a birthday cake featuring his baby face (and a quote from Christine that reads, "32 isn't even cool")! Oh, and of course... blessed him with the art of song ;).

And I'll end with a few more snapshots of the love I've been soaking up the last couple of weeks, including my sister's 26th birthday dinner (HBD Christina aka best seastar ever!). 

Okay - here's to Round 4 and being more than halfway done with my chemo! I'll be undergoing my first full PET/CT scan soon... so send all positive vibes my way if you can spare some :). 

Big hugs,
Steph
#spicystrong