It’s been over 2 weeks since my last update. There is a lot that can happen in 2 weeks, in 16 days.
I’ve been meaning to blog and write and everything, but even that can be challenging. How do I even begin to process this all again? Especially when my tendency is to go go go without thinking and just doing. Then it hits me, and I crash and burn.
i. chemo day 1
Two Mondays ago I started a new chemotherapy treatment back at Nationwide Children’s Hospital. New treatment always seems to come in pairs, like fraternal twins, two chemotherapy drugs but with different make up and different names: Abraxane and Gemcitabine. Each new drug I’m introduced to has an alien name, harsh sounding, and my mind just can’t really picture what its all doing.
It is a weird homecoming back to Nationwide Children’s. It’s been over a year since I’ve seen the nurses and the staff, and yet it doesn’t seem and fell like it. And literally everyone comes in and sees me that first, long day back. I see all my old nurses, the art therapist, the psychologist, the social worker, the recreational therapist, the massage therapist, Nick, Stacey. I honestly don’t think there was a moment where my family and I were alone for a minute that day, everyone stopping in on room 25 to see me. And everyone is the same it feels, but they are also different. They are glad to see me, but not for these recurring reasons of drugs and treatment plans. They all apologize that its the chemotherapy drugs that connect us, bridge us together once again, and it is a solemn and silent bridge. I get it. There isn’t much to say but that it sucks, and I know it just pains every member of the staff to even say something consoling or to at least recognize the situation and where we are again, on this bridge of chemotherapy and drugs that will hopefully guide me across to new health and new life.
The first day back at treatment is a long day of course. Nick goes over with me every possible side effect and what to expect of these new drugs, pages upon pages it seems. How could there be so much information on just two drugs? And how it is that these drugs are supposed to help you but they are out to harm you all at the same time?
Truly that first day is like a long day at work, a full time work schedule of 8am-4pm. It takes time to do a physical, check my blood, make the chemotherapy. And afterwards all I want to do is sleep off and on. Days later my body just aches. Some days it feels like Abraxane is taking my joints into his hands and pulling them far apart, and other times it feels like he’s taken a screwdriver and is tightening over and over again each joint, ensuring that they are tightly screwed into place. He is unsatisfied with my body’s dimensions it seems.
ii. chemo day 2
This past Monday, oh geez, what a Monday! The roughest of the days so far physically. I decided that I needed a port in order to receive IV chemotherapy this time around, so I was put on the surgery list. My family and I arrived at 6am that day, and I didn’t get into surgery until 11am because of another urgent surgery and just a chaotic OR scene. Wake up, and continuously just throw up even though there is nothing in my body since I hadn’t eaten since 9pm the night before. Every time I try to lift myself off from the bed, my stomach shifts, and I can’t do anything else but heave nothing or fluid. I haven’t been this weak in so, so long.
The plan was to have surgery that day and then receive chemo through my new port as well. By the time I finally feel ok enough to move from surgery recovery to the Hem/Onc floor, its almost 5pm. Geez! And I am still throwing up, still out of it, but I still want to get these chemo done and over with today. Stacey comes in, ready to fight to convince me to spend the night at the hospital (she knows how much I hate staying) and I just submit, knowing its the best option. This has just been a long day, the longest day it feels. And all I want to do is just sleep and eat but I feel like I can’t do either.
I want to look to Stacey and Paula and Nick and Dad and Josh and have them do it all for me, but they can’t. Something in me has a to get it together and get better. All they can do is help and comfort.
Josh sits next to me on my hospital bed periodically and just mostly looks at me. He is such a quiet guy, and these are the times where I am just trying to read his eyes. He ends up saying a lot without saying much, and sometimes I just need that presence of someone and not necessarily words that are trying to climb the difficult mountain of consolation and comforting words. Sometimes there are just no words but presence. That presence can also bring peace.
That surgery Monday day, my only meal was a dinner of a bag of goldfish crackers, haha. I’m even amazed that I keep those down, finally consuming and keeping nourishment (though little) within me by 8pm that night.
Even though I am a cancer patient, I am hardly ever on this 12th floor, the Hem/Onc inpatient unit. To sleep with an IV in, machines peeping, various nurses doctors in and out of my room is something I haven’t had to do a whole lot since I was 13 years old. And this evening I am remembering briefly those moments of my first diagnosis, of the inpatient hospital stays and the completely different part of the hospital that those stays were located on, and of my first port.
The next morning when I am released, Dad is rolling me in a wheelchair and a nurse runs out to see me that I literally haven’t seen in 12 years. She was a consistent caregiver of mine when I was 13, and I am amazed that she recognizes me and I’m sure she is more amazed that I remember her name. I wonder if seeing me brings her hope or discouragement. Hope because I am still here, 12 years later. Discouragement, because I am still here, back at this hospital, 12 years later.
I hope its hope that she saw 12 years later.
I hope she has other patients that aren’t back here 12 years later but living out there.
I cried a lot last week.
On the way out the door from my hospital stay, I cried for the first time in a long time in front of Paula and Stacey. That Monday of waiting/surgery/spend the night at the hospital was just too much; who could have expected and anticipated quite a start to the week?
I cried because I’m realizing I don’t know where I can find the strength again to do all of this, this chemo life.
And that’s a scary thing when you can’t find that strength, that energy, that hope, that faith within you that comes from Outside Of You.
The realities of cancer and the cancer world are hitting me more than ever:
I had a young friend at 16 pass away because of his cancer.
Many of my young adult friends are relapsing around me, as if cancer is a weed that easily spreads from one body to another.
I go on social media, and I see more friends’ family members being newly diagnosed.
And here’s me, fourth time undergoing this all, and having a harder time figuring out medicine and answers and mostly drive, motivation, hope.
what is hope?
hope is an empty glass fish bowl that you hold onto when you are young, the bowl larger than you even. It still feels firm, even though invisible/visible, you’re still able to see through the glass. This glass is solid, thick. When you put it on the shelf, from a distance you may or may not see the glass bowl depending on your angle and viewpoint.
That is what hope is: sometimes you see it, and sometimes you don’t depending on your angle.
As you get older, you start to put things in your glass hope-chest bowl. What college you want to go to. What your future job will be like. Who you’re going to marry. What might it be like to be a mama someday. You carry these things in your heart as you hope for them, expect them eagerly throughout life. This glass bowl is getting heavy and full and yet its density makes you all the more look into the bowl of hope for more, more life.
I feel like these days though I might just lose my grip on hope, the glass bowl slowly falling, slowly gliding against gravity and fingertips, and breaking all around me in more pieces than I could count.
I’ve been really careful not to drop it for quite some time now, but it is getting heavier on me as the chemo flows into me and my energy flows out.
To be honest, it did drop one day. Hope now has a place where its once solid nature is now broken, a crack and its so visible at all the angles. Who can fix this crack? Who can fix hope?
There is only one person I know who can, and yet my glass bowl seems even too fragile for me to give over to Him. I’m still a little child, and this glass bowl is larger than me and hard for me to hold, and yet I still want to try to on my own. I’m stubborn. I want to look at the crack and cry instead of the alternative.
Help me to hope still Jesus.
v. chemo day 3
Yesterday, I had my last chemotherapy of this cycle.
Like the moon, I live my life in cycles of waxing and waning, chemo cycles draining and waning me of whole self after each treatment. (When do I ever get full again? I’m unsure these days.) The waning-recovery seems to be growing in time and yet I am still sleepy. My body things it’s nighttime when its daytime and wants to rest, but when the night comes I lay awake in the bright moonlight, thinking, dreaming, anxiously living inside my thoughts instead of living life outside of them.
Like the moon, I am in cycle. Receive chemotherapy on days 1, 8 and 15—rest in the darkness of the new moon on the last Monday of the cycle and begin again all the following week.
It wakes the moon 29.5 days for its cycle of waning and waning. I take 28 days to receive 3 rounds of chemotherapy, one round per Monday, and the last 4th Monday off.
Including today, I have the next 13 days off from chemotherapy.
I can honestly tell you, I need this time physically, mentally, emotionally. It was a lot harder to change chemotherapy plans than I thought it would be, harder to adjust to a new schedule and new side effects and trying to figure out new work/life schedule and coming off the disappointment still of a failed clinical trial.
In retrospect, that is a lot of change. No wonder my mind is going anxiously and living more at night and simply zoning out during the day.
During these 13 days, I hope to rest more at night and enjoy the day. I want to drink fancy coffee and work quietly on my laptop in hipster coffee shops around Columbus. I want to work more with my writing. I want to laugh late into the night with my roommates. I want to figure out a work schedule that works with my body and work ethic. I want to try more recipes and creatively cook. I want to get my body back into doing yoga more consistently. I want read without confusion and the Word calm me. I want my prayers to be more than just groanings but a real conversation, where I ask questions and listen for answers.
Simply, during these 13 lucky days, I want to live.