Chemotherapy. Like any other word, will mean something different to each person. To the patient. The caregiver. The close family and friends. The distant ones. The doctors and nurses. The receptionists checking in the patients. The researchers and scientists and med students. The nutritionists. The salon professionals. The wig and head covering retailers. The person untouched by cancer…. And likewise, the reading of the word on a page is different than the saying of it out loud and different still is the living in it.
Have you ever really thought about the inside of words? Maybe you have a word, one where you know it so intimately that it’s like you’re talking about it from deep inside of it? If you haven’t thought about it like that, do it now. What word would you pick? What is it like from the inside of it?
October 9 holds a deep deep significance. “Chemotherapy” changed from a textbook descriptor of cancer treatment and a difficult memory from seeing both grandparents battle it to a word that I know so well that I can describe it from its inside. Chemo is horrifically evil. Causing matchless misery and overwhelming devastation. The patient trudges through it moment by moment, drip by drip as the paradoxically life-saving-poison is delivered directly into the heart, its intention to eradicate microscopic cancerous invaders. All the while, desperate for the relief of heaven because of the anguish caused by the collateral damage of the destruction of the body’s most basic and tiny (yet life-bearing) structures. Life is paused, tomorrow nonexistent because the moments of now are themselves too fragile to presume leaving the battle-worn one yearning for the L a s t. D r o p. T o. D r i p.…if they even get there.
I remember the morning, the Alice-in-Wonderland-logic of ‘I hope nothing gets in the way of today,’ the weather, the drive, the upset stomach, the waiting room, the bag filled with blankets, things to do, chargers, snacks and water (none of which I ended up using), the parking spot, the walk, the solemnness, the receptionist’s face at check-in, the vitals, the needle piercing my port site for the first time, the waiting, the reciting of my name and birthdate on 9 separate occasions within the 8 hours we were there, the beeping of machines, the ill of the infusion room, the fact that I looked like the ‘newbie’ because I hadn’t yet lost my hair…
…the intense culmination of the angst from months to moment as the first drop dripped inciting a whole new swirl of angst for what laid ahead beyond that last drop of Round One.
I sit here, three years later, holding the very difficult reality that I actually lived every brutal second of the inside of chemotherapy. And in the same heart that endured drip after drip, I hold a profound gratitude…another word that I speak out from the inside…that through the grace of God I have the sheer resilience necessary to keep showing up. I am in awe of my body and spirit (albeit battered and worn), fully and wholly transformed, inspired to treasure the rich gift of life this side of heaven, leaning into a revolutionary new understanding that can only come from the depth of a life almost extinguished… All of which makes me see eternity in a whole.new.light.
October 9 does indeed hold a deep deep significance.
*Post 918
Today was Weird :: 10/9/17 :: Post 42
Whoa. Today was weird.
First off, I woke up at 3:30am. And nope. I didn’t get back to sleep (and not for a lack of trying, either). In that time, though, in the silence of the darkness of the sky and snow and the only sound being my husband sleeping across the room, I practiced quiet. In that quiet, I felt gratitude. ??? Really? The day that I am walking into yet another HUGE unknown, the day that there will be no going back from, the day wrought with fears and struggle, the day of chemo…because I am the one, I have Stage 3 Breast Cancer. Gratitude…weird?
I was grateful for science. For research. For knowledgeable and educated medical professionals. I was grateful for my husband and girls and momma and dad. For my amazing army of family and friends. For my employer who is being incredibly supportive, flexible and generous to me. For how I have so many holding me up when I feel weak, praying hope over me when I have none, checking in with me to let me know that I matter. I was grateful for my body’s resilience…for how God created it to battle. How God orchestrated the timeline (while massively chaotic) and the medical professionals along the way. How His hand is so clearly seen in every part of this. How surgery was scheduled so fast to remove my aggressively accelerating invasive cancer…and how that is quite likely the reason I do not have metastatic disease. I was grateful for emotions. For being given the gifts of feeling, even when it’s hard and unwanted. For desiring the quiet and the BEing.
Then I prayed. The phrase that came to mind that I prayed over and over again – That His peace would be louder than my pain. And I feel this is an appropriate prayer for this whole journey. As there is so much more coming………. So I will keep praying it.
And I breathed. In – just :: Out – Be :: In – Peace :: Out – the pain :: In – Yah :: Out – Weh.
Getting ready for the day was weird, too. Just “knowing” (but not really knowing) what was ahead was a strange place to be. Understanding the purpose but my head was in a mess of chemo is good but then why does it have to hurt so bad?? What an odd tension. I’ve had a few people reach out and say “every drop of chemo is heaven to replace evil” and “we pray it does its job because it has a good job to do” – these things are true, yes, but how strange it felt to me to rationalize it this way.
And then it was SNOWING. My favorite thing ever. Sooooo, hmmm….Snow, my favorite thing ever, on the same day that I walk into this elephant-sized unknown? Odd timing. I said to Chris while we were driving in it that I will never look at “the first snow of the season” the same again and I was sad and frustrated that it happened on this day. Any other, but not this one. Then he said, “or we could look at next year’s first snow with hearts full of gratitude that you are past this phase and on to better days.” I like his attitude better. I think I’ll try and adopt it (even on the days I find it hard to see snow because of the memories).
We got to the appointment 5 minutes early….cuz I HATE being late. That said………..I am so tired of waiting in waiting rooms (a silly thing to be annoyed with at this point because there are at least 80 more in my near future). And every appointment I have been to – the office has been “running just so slightly behind” and I’ve had to wait for WAY longer than I’d like. Today – the same. I had to wait for an hour to even be called back for my vitals and blood draw. Then we waited for at least 30 minutes to even get called into an exam room to talk to my oncologist. Then we waited at least 20 more minutes in the exam room before the oncologist even came in. Then we met for at least 15. Finally, by about 12:15 I was being given my pre-meds (which took 30 minutes) followed by each of the 4 drugs for at least an hour or longer separately. We finally left at 5:45 and were literally the last to leave – they had locked the front doors and all of the few remaining staff members had their coats on ready to go.
Today’s waiting felt harder than all of the ones before. Hmm. Interesting in that what was waiting for me had the most “pre-appointment-expectations” than other appointments. In other words, I was given far more information on what to expect today than I had for the others. Yet in that, the waiting was nauseating. I wasn’t doing a very good job of just being where my feet were…of practicing quiet and BEing…Funny that I was so “good” at it at 3:30 this morning. I feel a little regretful of that as I write it out this evening but that’s not gonna do me much good, so I’ll have to just let that go and remember that next time, being present in the waiting room of an appointment is something to value. It did occur to me while waiting in the exam room that I could be praying for others in that quiet, so I did. And appropriately enough, the time felt far more enjoyable. I look back and thank God for bringing that to mind in that moment. And I did that throughout my day which made a very important impact on my day.
God thought it would be appropriate for my day to bring in another patient that sat a few chairs away from me and decided to strike up conversation. But not a short one. Because we had A LOT in common. Soooo, we talked. “What are you in for?” “Breast cancer chemo” “Me, too………………….” Now, I am an extrovert. And I love people. And I love stories. But today, I was so desperate for the quiet. I had things planned for my quiet day. And then she was there. And it was that on-an-airplane-where-you-can’t-go-anywhere-so-you-sit-and-talk-until-that-perfect-moment-comes-where-you-can-put-headphones-in kind of thing. She was quite pleasant, I enjoyed talking with her, and she’s my kind of people (super sassy and genuine), and we are likely to run into each other again, and it will be nice to see her. But I felt it weird today of all the days that God would weave our stories together. I struggled at first…but it occurred to me during that time that there is some solidarity in being WITH others going THROUGH this at the SAME time. Literally. (I will say it was admittedly difficult to see a lot of other patients in that big infusion room, some looking so very very sick. All of us fighting this evil disease. All of us fighting for our lives in our own stories.) Solidarity, yes. Tremendously difficult, so much yes.
It was so surreal being there today. I feel like I get a little closer to radical acceptance every day, but even as I sat there with my IV sticking out of my port and being attached to a pump alllllllll the live-long daaaaaaaaay it still felt, “Really, this is happening? I have chemotherapy drugs being dripped ever.soooooo.slowly into my jugular? I just walked through a difficult unknown and now it’s known, and I still sit here confused? I experienced my port being accessed for the first time to both draw blood and receive drugs that will kill cancer cells? I met Angela, one of my nurses, and I love her? She’s pregnant…I work at a pregnancy center….I have cancer….She is a cancer nurse…. We had LOTS to talk about and she spent her time with me and mine with her? I’m in a room with several others fighting for their lives? *ME*??? Trippy.
It was also so weird to sit there, have these drugs drip into my IV via machine pump, have Angela come over and change them out when the alarms would beep, have her attach a self-injecting patch onto my skin for my 5th drug to do its thing around 8pm tomorrow night and yet not “feel” different in my physical body. Granted, I am EXHAUSTED because I’ve been up since 3:30am, I didn’t get a chance to sleep because of my new cancer friend, and the fact that the newness of it all kept me pretty agitated all day, but I won’t feel side effects until day 3 (according to Angela and what is typical…but we’ll see because there hasn’t been a whole lot of “typical” to date). It’s just a weird place……there is NO going back. I WILL feel effects. I WILL lose my hair and the ACTUAL countdown is on. Because the drugs are flowing through my veins as I was there today…as I write tonight…as I will sleep and wake up and go through another day. Weird.
As I sat through the day, I looked out the window at the beautiful snow and thought often of Chris’ comment. I felt gratitude. I felt peace. As I sat through the day, God wove more people into my story. I felt gratitude. I felt peace. As I sat through the day, I imagined the chemo being mostly good, not all bad. I felt gratitude. I felt peace.
What a weird day. And there are certainly more to come. I go wig shopping tomorrow…..
A Year Later :: 10/9/18 :: Post 391
Today was the year anniversary of my first chemo. As I was going to sleep last night I was in a head space that was full of hard memories.
Remembering that it was the first time ever that my port was being accessed. Remembering what it felt like to be tethered to an IV pole. Remembering that I wore my “kick cancers ass uniform.” Remembering how it felt to show up and be walking into the unknown of chemo and side effects and how I’d feel. Remembering the countdown to losing my hair. Remembering how we packed a bag as if it was an overnight because we wanted to have things to do for the 6+ hours we’d be in the infusion center. Remembering how I ended up doing very little and stared out the window for most of the day. Remembering how it snowed on my first day of chemo.
Remembering how I wasn’t sure when the hell would hit but every moment was hard and it’s own little hell.
Remembering how the number 6 (let alone 18) was the most astronomical number and I thought I’d never survive to see 6 come and go…let alone 18.
What a hard day that was.
A year later I still have moments of awe that this is actually my story. That cancer has invaded my soul. That I am forever changed inside and out. That the 2×4 of a health crisis (after the 2×4 of an emotional crisis and the 2×4 of a major car accident) beat the hell outta me.
I’m grateful to be writing a year later. I’m grateful for the transformation despite the way in which the transformation transpired. I’m grateful I’m here to tell and continue to live the story.
(And, just because I have to remember all that happened today…my kid played in an incredible volleyball game vs a rival – Lutheran – and we beat them. We ended their 14-0 undefeated run. And it was a sweet sweet victory. Incredibly proud of my kid and her team, for their maturity and composure on the court in a high pressure game. And for my kid to do that at 14…..amazing!)
My body hurts. My head is full. My heart, weary.
But I’m glad I’m here a year later.
October 9 of 31 :: 10/9/19 :: Post 754
Today, two years ago, I experienced my first infusion of chemotherapy. Dexamethazone. Herceptin. Perjeta. Taxotere. Carboplatin. Neulasta. I was at my cancer center, in the infusion room, taking it all in. Seeing all of the other sick people…all with different stages of baldness and peaked gray complexions, some alone, some accompanied, some asleep, others talking boisterously…some patients coming in to say a quick ‘hi’ to the chemo nurses as they passed through for other appointments, an older woman showing off her ‘new boobs’ (literally showing them off) and passing out cupcakes to celebrate.…
It was a weird time. There was so much waiting on those days…waiting to be taken back for bloodwork, waiting in another room to see Dr. Basche, waiting in the infusion room as they prepped my chemo bags, waiting while drip after slow drip, the poison entered my bloodstream. I remember sitting in my chair, looking out the window, quiet in my thoughts…Chris next to me doing work, waiting for the last drop to fall so he could take his sick wife home to recover before having to take her back to do it all over again a short 3 weeks later.
That first infusion day was a lot to process – such kind and sweet nurses taking care of me as they hooked me up to bags of death and life, my port being accessed for the first time and the queasiness that I felt just thinking about how a device under my skin would send chemo straight into my jugular, still having long hair and wondering what it was going to feel like to lose it all…not having any concept of what I would look like bald…and still having to wrap my mind around having to be bald at all. And certainly, there was no way of predicting just how awful chemo would make me feel, so I sat there unaware of what laid ahead, speechless that I was actually there in that chair to begin with. It also snowed that day. I remember the cold and cloudy morning as we drove to Rose, quiet and somber, knowing (but not really knowing)…
Today, two years later, I’m grateful for so much. I choose, on these anniversary days, to hold both – to hold devastating memories with immense gratitude because they both matter.
Breast Cancer Awareness Month…
…Day nine – Accepting help is really hard. Keep offering.