Quiet

I spend too much time
Raiding windmills
We go side by side
Laughing til it’s right

There’s something that you won’t show
Waiting where the light goes

Take the darkest hour
Break it open
Water to repair
What we have broken

There’s something that you won’t show
Waiting where the light goes
Maybe anywhere the wind blows
It’s all worth waiting for

Pull on the borders to lighten the load
Tell all the passengers we’re going home

I spend too much time
Seeking shelter
World without end
Couldn’t hold her

There’s something that you won’t show
Waiting where the light goes
Maybe anywhere the wind blows
It’s all worth waiting for
Anywhere the wind blows

Toad the Wet Sprocket, “Windmills”

The ceiling(s) in the rooms I spent as a teenager were your typical 90’s popcorn affair. Despite their lack of interesting or defining features, I spent an abnormally large amount of time staring at them. Sometimes I laid on the carpet. Sometimes I laid on my bed. And always there was music playing. My room was my safe space. It was safe from the yelling and arguments going on outside those doors. The lectures and the punched walls. It was safe from the school bus and the middle school where all of my friends took off on different paths leaving me very much alone. It was a safe spot from a new school and new state my Junior year. From interacting with my mother and grandparents. From having to reinvent myself yet another time.

Toad the Wet Sprocket’s “Dulcinea” was released in the late spring and early summer of 1994, and it was a mainstay (among many) on my playlist during the 1994-1995 school year. My Junior Year of High School, spent living with my grandparents after my Dad got laid off. The future was wide open, uncertain and empty. I was writing movie reviews for the high school paper and started dating 6 foot 3-inch tall senior named Eric, who played the trombone and spoke french. Everything was in disarray that year, and at the same time everything was okay. I was learning that change had always been and probably always would be a part of my life. I was learning that I could take care of myself.

I sought out and spent most of my time alone that year. And when I was alone, I was thinking. And I kept going back to the song, “Windmills”. Firstly, it was soothing. It rolls in like a gentle wave and gently ebbs back and forth. The lyrics brought up feelings for me of both an ending, and of a new beginning. Of facing dark times and surviving them, being forgiven for past mistakes. And of facing an uncertain future with courage and bravery. “Maybe anyway the wind blows.. it’s all worth waiting for…” And after listening to that song, that’s exactly how I felt. During this time, this quiet, I was beginning to craft my narrative of survivor-ship and growth.

It’s always during the quiet that I think the most. I don’t lock myself in my room any more, but a little bit of alone time; a little bit of quiet is still a necessary part of my existence. And yes, I still (of course) listen to music. But lately? There has been too much quiet. And too much thinking.

With regard to my cancer, I’ve been in my longest feedback drought since my diagnosis. I have had no new scans or test results since November. November. The surgeons said that they got out all of my abdominal tumor. There was uncertainty as to whether they got both ovaries, but after my follicle stimulating hormone test came back well over the menopausal range, they are assuming that they did. Good. And my CA 19-9 tumor marker rating just after surgery dropped from 124 to 86. Great! But honestly, kind of also… expected? 36 (the very top end of the normal range) is the lowest it’s ever been since we started tracking it and I got there just after my LAST surgery in April. The real test is where it trends from there. Creeping back up again? Creeping back down? I really wish that I knew. Except that my oncologist keeps forgetting to put in orders with my blood work for an updated tumor marker count! After my last set of blood work, when I noticed that they weren’t testing for it again, I actually called my oncologist’s nurse to ask whether they could use the extra vial of blood and add the test. “No problem!” And so it was added.

As each day passed throughout last week, I would anxiously go on MyChart with my hands over my eyes to see whether my tumor marker results were back in. Nothing. This morning I finally broke down and called my oncologist’s nurse and asked if she could check on it. A half hour later I get the call back. “Well, it seems that the lab didn’t process it for some reason. They couldn’t really explain. But don’t worry, I will make sure that your CA 19-9 count is included with your NEXT set of blood work when you come in next week.”

And so the waiting continues for another week or so. In the meantime, my oncologist will probably order a new scan soon- possibly for as soon as right after my next visit, so there will not have been much passed time between finally getting an updated tumor marker reading and getting the scans themselves. The entire purpose of monitoring tumor markers? To help determine how treatments are working between scans.

Now here comes the weird part. I was relieved. I know that I need to see that number, but I am terrified to see that number. I’m terrified because I have become conditioned to expect bad news. I half suspect that there is some deliberateness behind my infrequent tumor marker readings. Maybe my oncologist has guessed that I am high strung and sees no point in getting me worked up about where the numbers are moving? If so, maybe he is right.

But in the absence of both bad and good news, all that is left is quiet. And thinking. Some days I am optimistic and can pretend that everything is working great. The chemo that was shrinking my liver metastasis before going off chemo for surgery is back to work again! Some days are saturated with anxiety and fear. The last time I took a chemo break for surgery, it stopped working when I started back up again. What if that’s what’s happening now? If so, what will I do? As I’ve stated before, my current line, FOLFIRI is the last first OR second line chemo currently approved and available for my mutational profile.

So I am stuck in my room staring at the ceiling, thinking about all of the “what ifs”. I line up all of the planes on the runway that I could possibly still take when this flight ends. What comes next is either 3rd line treatment (expected to only slow growth not shrink it) in hopes of prolonging the inevitable a little longer. Or a clinical trial.

I have two potential “trial” options that I am looking into. One isn’t really a trial, but it is mimicking a trial that is currently ongoing. It basically involves adding an immunotherapy drug (Opdivo) to the 3rd line treatment (Stivarga) that I would be moving on to anyway. However, since it currently isn’t approved for this purpose, it would require appealing to the drug company to letting me use it for free under “compassionate use.” The other option involves putting together a mountain load of documentation and sending it out so that I can get tested for my HLA-1101 or something or other status in order to qualify for a vaccine trial targeted to my specific KRAS G12V mutation. So, a lot of work gathering stats, test results and other data, and- assuming I even qualify- potentially spending weeks away at the NIH in MD for something which might work?

I was initially favoring option 1. However, the online Colontown Facebook trial group is tracking US members currently taking this combo either through a trial or off label. The results so far (after a couple of months)? Out of ten members, six had progression and four have remained stable. Of course this is a small sample size, but so far it does not appear to be generating as much success as the Phase I trial in Japan that captured headlines at this year’s ASCO (American Society of Clinical Oncology) conference. Now I am wondering whether taking a shot (pun intended) in the dark with the vaccine trial might be my better flight path.

I line up my planes because I know that when the planes are gone that my journey is finally ending. But here in the silence, it is not ending yet. I am facing another uncertain future. Am I facing it with courage and bravery? The uncertainty fills all of the gaps with both hope and fear. Sometimes I get so ambiguously fearful that I can barely catch my breath. But there are other times, like this morning, that I wake up in the arms of my husband before getting up to move from room to room. I crawl into their beds and cuddle with each of them as I wake them up for school. Each member of my family still enjoys this, including my fourteen-year-old. How many fourteen-year-old girls still want to cuddle with Mom in the morning? In their arms, I am filled with warmth and love to the point that it is overflowing. I think about how lucky I am to be able to both give and receive this much love. And I am at peace.

There’s something that you won’t show
Waiting where the light goes
Maybe anywhere the wind blows
It’s all worth waiting for
Anywhere the wind blows

In my teenage years, when I heard those lyrics it soothed me. I’d survived so much already. No matter what lied ahead, it was all worth waiting for because I knew that I could handle it.

Now, I know that what waits on the other side is dying. The wind is bound to blow me im that direction. Is death worth waiting for? I cannot say so. At least not yet. I am selfish and would rather “wait for” the chance to see my children grow up. I would rather grow into a shriveled up old woman with my husband by my side. However, as I inch closer to that point, I am going through the process of learning how to die. If I can feel the love I felt this morning around me, maybe I can find that peace again. And maybe, in the midst of a quiet before my final uncertainty, I can face it with the same courage and bravery.

2 thoughts on “Quiet

  1. Thank you, again, for sharing your thoughts. I am sitting here thinking that you are writing exactly what I would be thinking if I was in your situation: is no news good news or a way to put off processing potential bad news? Am I lining up my planes too early or should I focus on planing next steps and investigating trials? . . . . ..

    Your love for your husband and kids shines through. No matter what the outcome and when, this blog is an amazing legacy for your children.

    Liked by 1 person

    1. Thank you, Barb. Before my diagnosis, when I still worked I would be getting ready at the same time as my children. I’d worry about being late. Wake ups were opening up their doors and yelling that it was time to get ready for school. There was no time for snuggles or for savoring a moment with them. These days I realize that that is ALL that matters, or has ever really mattered. Those moments. I am grateful to be able to appreciate and savor them now.

      Like

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