Walking Through Windows

Is there a powder to erase this?
Is it dissolvable and tasteless?
You can’t imagine how I hate this

I’m trying, but I’m graceless
Don’t have the sunny side to face this
I am invisible and weightless
You can’t imagine how I hate this

I’m trying, but I’ve gone
Through the glass again
Just come and find me
God loves everybody, don’t remind me
I took the medicine when I went missing
Just let me hear your voice, just let me listen

All of my thoughts of you
Bullets through rotten fruit
Come apart at the seams
Now I know what dying means

I am not my rosy self
Left my roses on my shelf
Take the wild ones, they’re my favorites
It’s the side effects that save us

Put the flowers you find in a vase
If you’re dead in the mind it will brighten the place
Don’t let them die on the vine, it’s a waste

There’s a science to walking through windows
There’s a science to walking through windows
There’s a science to walking through windows
There’s a science to walking through windows without you

– The National, “Graceless”

It’s 12:45 on a Saturday morning, and I can’t sleep. I can’t sleep because I am in pain. The cramping in my lower abdomen is a cake walk compared to the constant sharp stabbing in my lower back. Usually Oxycodone can come to my rescue in times like these, if you give it enough time. But it’s quiet, I’m alone, and the relief I need can’t be lured. I don’t know what it is about baths, but they take the edge off. And what I need more than anything right now is dullness. So I turn on a faucet, gingerly step in, and begin to write.

I’ve grown a whole new appreciation for hygge, which I guess is the danish word for a sense of calm and coziness. I find it when I sit in the recliner with a heating pad, drinking my coffee, and listening to the sound of the household around me. I feel it here, surrounded by liquid warmth in the bath. I feel it when I snuggle up with my husband or one of the kids downstairs. We might watch a tv show, or I might watch them play a video game.

There is nothing productive about it whatsoever. Which is, I suppose, why I have experienced “hygge” so little in my life- and especially since I had kids. My inner voice tells me- “Isn’t there something productive that I SHOULD be doing?” “Aren’t I just being lazy?” Nah, I was just (gasp!) trying to enjoy life. Instead, I wasted every second I allowed myself to “splurge” feeling guilty.

These days, hygge comprises the majority of my time. Because pain has been holding me back from being my formerly “productive” self. And I don’t care. I care very little about just about anything small that threatens to take away my joy. My “high highs” and my “low lows” have both been difficult to come by these days.

This is the part where I have climbed through the jagged, broken glass. I am still bleeding and forming new scars, but can now view every new thing that comes with a sort of numb sardonic or dark humor. I imagine that this is just another phase of my grieving process, but for now, I linger; enjoying the break from the emotional agony- even as the physical pain ramps right back up again.

For example, we still haven’t determined the root cause of this latest round of pain, which sent me to the ER two weeks ago. I went through a guantlet of tests and appointments this week to figure it out. After my transvaginal ultrasound, I had a follow-up with the doctor who ordered it and he described it’s inconclusive results this way: “When you hear hooves stomping, you usually think of horses, but occasionally it’s a zebra.” Apparently, I’m a zebra. So, the results of this week’s tests are… more tests!

The results of the ultrasound can be summarized thusly: 1) Uterus: everything looks normal except for the right corner where the lining is thicker. This is usually a sign of a hidden polyp, but because I’m a zebra I get to schedule outpatient surgery for a procedure that involves filling my uterus with water and doing a D&C to confirm exactly. 2) My softball-sized cyst in my lower left abdomen has a small, solid center. The (insert robot voice) IOTA ADNEX model says that this has only about a 20% chance of being malignant.

Another possible theory is that this solid mass is leftover ovarian tissue that may now be acting like an ovary and spreading feminine hormones around and nullifying my menopause- a condition called Ovarian Remnant Syndrome. It doesn’t usually present this way… but again, I’m a zebra and it matches my pain and bleeding symptoms perfectly. So I gave blood for another Follicle Stimulating Hormone (FSH) test to sort that out. One of these things is causing my intense pain and bleeding. Which will it be? Stay tuned for the next episode of Zebra Life!

The sardonic side of me wishes desperately that I were a unicorn instead. If I were a unicorn, I could just shake my shiny ass and make all of this just disappear.

This afternoon, I got a ping on my email: “Your test results are ready!” I log in to Mychart to discover that they are the results for my Thyroid Stimulating Hormone (TSH) test. In case you were wondering, no- this isn’t the test that was supposed to be ordered. This means that yes- they conducted the wrong test. On the plus side, I am now aware that my Thyroid numbers are extremely low: 0.029 on a scale where the “normal” range begins at the lower limit of 0.4. It turns out that I have hyperthroidism. Great. Now if only I could get the results of the FSH level test that was never conducted…

Thanks to a little bit of online research, I was able to determine that my newly discovered thyroid disorder is most likely due to my current immunotherapy trial. Apparently, thyroid issues occur in about 15% of patients, with the majority suffering from hypothyroidism, and maybe 5% of that group having hyperthyroidism. The zebra gallops again.

I guess that I have to have a bit of a dark sense of humor, when you consider that the very fact that I am dying of colon cancer at 43 makes me a zebra all by itself. When I am still suffering from lady part maladies after having gone into surgery with a chance of having them removed twice now? When surgeons at the Cleveland Clinic miss a mass on my ovary as big as the ovary itself? When I am one of the 15% of Colon Cancer patients who gets peritoneal mets, and that fact alone makes all of my doctors give up on a chance for a cure. When I burn through both first line chemo treatments available to me within 18 months…

I know that I am looking over all of this with a negativity bias. I know that there are some who get diagnosed at a more advanced stage and didn’t get as much time or as much healthy time as I have had after diagnosis. I know that there is always someone who has it worse. I mourn for the people I meet online who don’t have the social support that I have. I mourn for those who have children younger than mine, who might not even be old enough to have memories of mommy before she died.

All of our lives are ruled in part by luck. We are dealt a set of cards, and then are left to play those cards as best as we can. I feel like I’ve played my cards better than some, but worse than others. Overall, I’d like to believe that I at least tried to play the game the best way that I personally knew how to. I made some mistakes. I learned from them. I played by my sense of values and purpose and I reaped a few penalties for that along the way.

And so here I am, at the end, with nothing else to do but to laugh at the world and to laugh at myself. Society, to me, looks like a bunch of little people giving away their happiness, in small fistfulls, every day. Husbands and wives pick at each other because they are restless and need to invent a conflict or reason they were wronged. Parents hover over their kids to get a perfect score, or buddy up with coaches and teachers to try to give them an advantage; all along the way sending their kids the message that “I love you if….”

It looks like alcoholics wasting their precious lives drinking instead of fixing their problems, as if the life they have been given is so much trash, and they can just fix it some other year or decade in the future. It looks like politicians and people that no longer care about investing in the future. Who have normalized denying science and truth in exchange for short-term power and ego. It looks like people who have allowed themselves to be convinced that happiness and health are tied to consumerism, instead of connection. And it looks like people who have sold their empathy and any any false pretense of living according to the tenants of their religion for the price of affiliation with their con man (anti-christ?) leader and never for having to admit that he and they are wrong.

Magical thinking and conspiracy theories are enjoying a heyday right now. Cancer patients, as a population, have always been vulnerable to this. People who think that something they read on the internet will cure their cancer. “Eat only grapes and lemons!” one survivor of a lesser stage cancer tells me as I wonder how reducing my only food intake to sugars could possibly save me.

I get it. I really do. Doctors, frankly, suck at giving out hope to terminal cancer patients. And where the medical profession fails, they seek it out elsewhere. Something that gives them a sense of autonomy and control. And there are more than enough charlatans out there to step in and fill that gap to make some money. Hell, even I’ve read a book or two on alyernative medicine myself… with a grain of salt. Saving the least dangerous or most plausible solutions for when I hit plan Z and no longer have anything left to lose.

Life paints itself like a meadow, but it’s filled with hidden traps and pitfalls. Get an unexpected illness, go bankrupt. Roll the dice to see whether you go back to the beginning to start over with a new set of rules, or whether you go straight to the cematary. Do not pass Go. Do not collect $200. It’s enough to make anyone want to reach for the hammer, break the glass, and walk straight through to some kind of clarity or escape.

Wisdom has taught me that there are only 2-3 keys to happiness in a chaotic, cruel world: 1) focus on what you CAN control; right here, in this moment and 2) release any and all expectations that the world is just or fair. All suffering and grief come from the loss of something that you feel is owed to you. Try to grow, but focus more on the joys you have now than you do on the things you hope to gain through your efforts. Nothing is guaranteed to come to you, because the world isn’t fair.

Finally, feel your emotions, and don’t let anybody tell you that they are wrong. Scream, shout, cry, laugh, sigh, and then walk, write, jump, dance, run, punch something, etc. Celebrate your fallabilty and your humanity, your love, and your anger and your sorrow; and then celebrate life. Because tomorrow is another day. Until someday it won’t be.

It’s 2:30 am now in the tub. And all of the water has gone cold. Technically, it’s already a new day for me as well. But my body needs sleep, and I’m hoping that the Oxycodone and bath have numbed the sharp pain enough to quietly escort me there. If I am lucky enough to wake, I will have another day myself. To kiss, to snuggle, to love, to laugh, and lots of other things that aren’t very productive….. and try to fix all of the typos and errors in this blog posting.

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