I’ll start by saying that this post is going to be a doozy. The past 2 months have been completely hellish, and I’ll explain why below. In the hell that this time has been, I’ve been thinking a lot about the whole “cancer is a gift” thing that seems to permeate our culture, and I have a few things to say about it. Honestly, this feels like one of the most important posts I will ever write. If you read one thing from me, please read this.
So, first, here’s more about the past 2 months so that you know where this post is coming from and what I’ve been dealing with.
In the beginning of June I took a major downswing. The most noticeable, and, for me, worrying symptom has been that all of a sudden, I can NOT stay awake. So when I use the word “fatigue” here, I’m not talking about being tired, or sleepy, or even not being able to do normal activities anymore. I’m talking falling asleep out of nowhere in the middle of conversations out in public. One minute I’m talking, the next Evan is shaking me awake. I tried to walk up a short hill to get home and the fatigue hit me so hard that I tried to literally sleep on my feet halfway up the hill. If he hadn’t been there to usher me along and physically push me from behind, I would have just curled up on the side walk and gone to sleep. I have been awake about 4-9 hours out of every 24 hour period. Let that sink in. I’m sleeping ALL the time. Just, losing my life to sleep. And it’s not for lack of effort or motivation – I am guzzling caffeine like it’s my job, I’m back on steroids, I’m now on Ritalin, and I’m still unable to stay awake. It’s. Awful.
At the same time, all my other symptoms started amping up pretty considerably. The headaches and nausea. It’s now not unusual for me to wake up vomiting. I have to wake up and immediately take anti-nausea meds, wait an hour, then try the rest of my meds/breakfast or else I’ll throw everything up. The headaches are brutal and no longer adequately controlled by pain meds. So the few hours in the day that I am awake, I’m completely miserable.
My back pain is the worst it has ever been. Most mornings, I wake up and can’t physically move. At all. Evan has to scoop his arms underneath me and lift me out of bed while I cry out in pain. Which has been especially challenging lately because he broke his collar bone.
Yep, you read that correctly. Evan has a broken clavicle. Together we are pretty useless. So we’ve been bouncing around living between my parents’ house and my sister’s. We are back home now as an experiment but I’ll be honest, I’m nervous about it. Neither of us can do housework, cook, drive, lift things, anything really. It’s bad.
All my other neuro symptoms have also been getting worse. My memory is gone. I get confused a lot. I flip words and letters around and have a hard time spelling basic words. I am extremely irritable and want to punch everything in sight, but to be honest, who wouldn’t? I fantasize every day about just running out the front door. I just so badly want to run away. But I can’t. So I feel so trapped and miserable and suffocated and I just cry and pick fights and then cry more because these might be my last days and I’m spending them crying, miserable, panicking, and fighting with my loved ones.
Which brings me to the real doozy. I have spent the last couple weeks legitimately wondering if this is the end, in a way that I have never done before. It has certainly felt like the end. If I can’t stay awake, how can I live much longer? It seems logical. And I’ve been panicking. Panicking so hard core. I have not handled this with grace and humor and all those things we hope for at the end of our lives. I have wailed and sobbed and felt gut wrenching heartache at the thought of saying goodbye to my family and the girls growing up without me. I asked my doctors if this was the end. I admitted to my family that I think it might be.
It’s been so bad, you guys. So bad.
At first my docs thought that all this was due to adrenal insufficiency – that basically I’ve been on and off of steroids for so long due to my brain Mets that my adrenal glands have shut down and stopped producing their own normal steroids/hormones, making me feel like crap. But, now we’ve experimented with double the dose of dex (steroids) that should have fixed that problem, and I’m still struggling, so that is seeming less and less likely. I should see an endocrinologist soon to get their take.
I spent all last week going through all the cancer tests, because it seemed very likely that it was back in my brain. But, I had a stable brain MRI and PET/CT. We are holding off on another spinal tap for now.
So now we have zero answers, and I still feel like shit, and I’m still miserable and have a quality of life that is deteriorating by the day.
I am also bored out of my mind. I can’t watch TV, because headaches. I can’t write. Or work on the computer. Or read. I can’t go for walks or do anything active. Being around people is even difficult when I am this fatigued. It gets in the way of absolutely everything. And this is no kind of life.
I’ve been crafting and sewing a lot, but there’s only so much I can do, and even that takes energy that I don’t have.
Harriet + Ginger has been really helpful – for those who don’t know I started a new project making and donating lavender eye pillows to cancer patients, loved ones, care-takers, and providers. I am also selling them (you can contact me to purchase or purchase on Etsy) and profits go towards the materials for the free ones that I dontate. I also very gratefully accept donations to help me fund the free ones, as I can’t fund them myself. So far it’s going really well and gives me something to do and a sense of purpose, and it takes my focus off of my own hell hole which is good for me. Please contact me if you’d like to place an order, or fund an order to be donated to an infusion center/non-profit. I will organize all the donation logistics if that’s something you are interested in. Since the beginning of May I’ve donated about 500 of them, and people seem to respond really well to them, so that’s something.
Which is a nice lead in to what I really want to say right now. Sure, I might not have discovered my love of sewing or started Harriet + Ginger had it not been for cancer (I also might have, who knows) – that DOES NOT make cancer a gift. It means that I took a really shitty circumstance and found a way to do something meaningful anyway. I’ve noticed that there seems to be a resurgence of this “cancer is a gift” attitude in some cancer circles (and yes, there are cancer circles, which is ridiculous in and of itself), and I just can’t keep my mouth shut, especially after the truly horrendous couple of months that I’ve had.
I understand the temptation to make cancer seem not so scary, not so formidable. But it’s lies, and it doesn’t do anyone any good. Cancer is scary. It is formidable. It causes the patient and everyone who loves them indescribable pain. And that must be acknowledged.
I feel particularly strongly that we cannot give the disease the credit for the betterment of our lives after diagnosis. Often, people get a serious disease like cancer, and they go on to make all kinds of big life changes as a result (changing careers to what they’ve always dreamed of, or the like), but WE MAKE THE CHANGES THAT BETTER OUR LIVES, not cancer. Had the patient not gotten cancer, likely another stressor or life event would have precipitated those very changes – because it is the patient who has the courage to change their lives. We need to stop with this “cancer is a blessing” or “there is magic in cancer” bull shit. It is lies. The truth is that there is pain and death and frustration and gut wrenching fear for the patient and everyone who loves them. People are dying and suffering, all the time. I am suffering.
All the good stuff that comes along as well comes along because the patient and their loved ones make it happen. I made advocacy happen. I made Harriet + Ginger happen. Every patient I know who has gone on to do great things after diagnosis, or live a life they are happy with (things don’t need to be done on huge scales), did so because they are amazing people. Patients do not lie there and wait for the magic of cancer to take over and bless their lives with money and love and fortune. It’s just all lies.
Telling the world that cancer is a gift is, to me, akin to telling a soldier who has had their life wrecked by the front lines that war is a gift. Nope. Anything that that soldier comes home to accomplish or do or believe, they deserve the credit for. They went on to build a life that they wanted despite the unimaginable horror that war put them through.
I think it’s actually pretty offensive to those of us who have overcome shitty circumstances thanks to our own will power to be told anything different.
Cancer is not a gift. There is no magic. Patients live meaningful, good lives after diagnosis thanks entirely to their mother fucking resiliency. The end.