These days it is becoming harder to distinguish between feeling exhausted and feeling depressed. The truth is I am probably both, and one is feeding into the other like the chicken and the egg.
I was re-diagnosed in December of 2021. This incarnation of my disease has spanned 2 years and 3 seasons and I am only 2/3 of the way through treatment. It is enough to call even the most even-keeled person’s mental state into question, and I don’t think anyone who knows me well would call me even-keeled.
I am having a very hard time falling asleep at night, even though I feel like I could slip into a nap at almost all times while the sun is out. This is partly due to restless leg syndrome, which is a silent enemy, and also to do with a racing mind. Since I work in a school and it is summer, I can sleep in, which has turned into part of the problem. I find myself sleeping in far too late most days. In part because I fall asleep late and, I fear, also because depression fears daylight.
This morning, in a stunning break from tradition, I woke up at 5am, my mind churning. I got out my phone and composed a list of things that were on my mind ranging from, ‘When the kids go to their one-week sleepaway camp, do I need to be able to fit the pillow in the duffel bag?’ to ‘ uterine surgery- do I still need this?’ I did what any insane person would do and put on my gym shoes and went for a jog. I needed to clear my head by way of clogging it with the test of ‘will I survive this exercise?’
The jog helped, but gave way to a nap from 10am-noon, which is on a depressive person’s cheat sheet for getting through the day- sleep through as much of it as you can.
Contributing to my deteriorating mental state are the obvious anxieties: the re-diagnosis of a deadly disease and excruciating treatment, but also a whole ton of ancillary issues like the feeling of alienation from all the well people, weight gain and loss of sense of self.
I see my my sister truly living her best life, looking better than ever and feeling happy and fulfilled. I watch my friends traveling with their families to cool and exciting places. Of course I know that no one’s life is perfect, but mine is crumbling at the foundation.
My kids are spending way too much time on their devices this summer because their mom can’t take them on adventures. I feel particularly terrible about this. I lay in bed gazing out the window at the flowering trees and blue skies and know my son is in the next room, face buried in an iPad watching utter nonsense for hours on end.
Another area that feels dismal is my marriage. My husband and I have different love languages which is normally fine, but when one of us is a shell of a human being, the differences slam into focus. I long to be listened to and looked at, whereas he wants to offer acts of service. He has been working hard to start philanthropies on my behalf, which is so wonderful, but all I want is eye contact. I am the walking personification of all the sad things in our lives right now. Though he won’t admit it, I know he avoids looking at me because it hurts him.
Does everyone know that when you lose your hair to chemo, you lose your eyelashes too? The combination can really make a person look ill. And I promise you they likely feel as ill as they look. I understand that looking at me these days carries with it a heavy burden. I am the disease. I embody everything it has taken from our family.
This lack of human connection is difficult, for obvious reasons, and because I am a woman who feels self conscious under the best of circumstances. I look 15 years older and am 15lbs heavier and gooey. Facebook hit me with a photo from 4 years ago earlier today and it was instantly upsetting. I looked so vital. I had hair, eyebrows, lashes and a flush in my cheeks that wasn’t from a menopausal hot flash. The loss of this version of myself is painful, and though I will never know the truth, I fear my husband, by way of being human, feels the loss too.
I have never been afraid to admit that I struggle with anxiety and have dipped towards depression before. I have taken an SSRI for over a decade for these reasons. During this cancer, I have started seeing a new psychiatrist who has been so helpful managing all of my many medicines. One new med he started me on is Zyprexa. It is used off-label for chemo-induced nausea, but its main use is as an anti-psychotic.
It is not lost on me that I am taking something that isn’t allowing me to be psychotic. I wonder how much worse my mental state could be without this drug? I am 2 weeks from being done with chemo, and hope that they won’t take me off the anti-psychotic when it is all over. I am not too proud to admit that I likely need the drug for its intended use.
Speaking of crazy…I have to let my mental health take a backseat to my physical health right now. That means spending sunny days behind my curtains and feeling like the chirping birds are the enemy. I will continue to pine for the summer vacations of my friends and the figures of the able-bodied. It has to be okay. I have no other choice.
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I know it’s weird but I like you as a person and I’m a complete stranger. I live it Skokie so not to far sways from you. If we were friends I’d be there in second to hang out with you! Try not to be too hard on yourself as so much is just out of your control. I hope This 1/3 is almost over for you and all wonderful things happen to you for all of the rest of days till 90! You deserve it all.
How can we help? Seriously…is there anything that we could do to help alleviate your suffering? So many of us who you don’t know ‘out here’ are very aware of the challenges you face. Please don’t hesitate if you want to vent, go drinking, need a mini road trip ( I’m in Wisconsin!) need a gal pal to make rockin smoothies, foot rub, go to a drag show, fresh berry parfaits… you name it. We’re here. For you. Anytime 💜📿🔮 xo D
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Two more weeks before you can put this behind you! You inspire me every day to just keep going. Please know that you have a cheering section waiting for you at the finish line💕
You’re doing the best you can as a woman/mom/wife with the cards you were dealt. I hope things start getting easier for you and your family soon. I’m curious, what does the new tattoo say?
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Sending so many stinkin’ positive vibes! Wish I could do more.
❤️ so much of what you are feeling is deja- vu from my exact thoughts 3 years ago when I was going through same treatment- with several “we have never seen this happen before” complications. Having my active treatment end in March 2020 and having 3 follow up surgeries delayed many months because of the pandemic also felt like a slap in the face- like is the world trying to tell me something? But keep fighting – you are almost there. And if you need a friend/support who just understands all the sh*t I can be that person! ❤️
Grace, I have been following your story since you began this blog. I was your beautiful daughter’s 5th grade assistant but it was during covid restrictions so I never had the chance to connect with you at school. This morning, I am especially moved by your words and wanted to respond. I am always drawn in by your writing but it is your honesty and vulnerability that speak so profoundly to me. I, too, had breast cancer. Mine was in 2009 and was caught very early- a lumpectomy and radiation were the extent of my treatment and my physical recovery was pretty easy. But my emotional and psychological recoveries are ongoing. Cancer is a horrible beast that robs each of us in its own particular way. I long to live lightly and without thoughts of doom with every ache and pain. I, too, see others appearing to live their best lives while lasting peace and happiness are such a struggle for me. Moments of joy, yes. Gratitude for my family and friends and comfortable life, yes. But trust in my body and living free of fear, no.
I guess I just wanted to say that your words are a gift to me and so many others. You are seen and heard in this space. Your story is painful right now but if you have shown us anything, it is that you are resilient and powerful. Those things are just resting right now but will reemerge and morph you into a version of you that you recognize and love.
Sending a hug to you and that special girl of yours:)
Grace, your strength is something to be admired. Your honesty is so brave and beautiful. Such a hard thing to undergo, and then face it all again. You have a right to be jealous, frustrated, angry, sad , confused and every other possible emotional state. You are brave and wonderful, beautiful and strong. Hang on!
I had triple negative and my primary ordered CBD oil. It has made all the difference drugs couldn’t.
You are a BRILLIANT writer. Cancer isn’t taking that from you. Maybe ditch Facebook for a while so you don’t have to look at other people’s vacations. Seeing as how I am going nowhere anytime soon I may do the same!