This is an update I have been avoiding writing. In some ways, I hadn’t been able to pull out the silver lining of this yet. I hadn’t been able to find my own peace with the past few days and I was afraid to show up here without answers and without growth. So, at the end of the day, I guess I’m just showing up. A little worn and ragged, but I’m here. As that was my promise in the beginning. To be true to myself and to you. And so, here I am.
I of course expected that cancer would be a demanding, if not painful and completely miserable physical experience. I wholly anticipated that there would be a mental and emotional struggle associated with that physical battle. I knew I would wrestle with fear and limitations and mortality and the tedium of “dang it, I don’t feel well, and I am sick and tired of feeling so sick and tired.” I did not expect that the cocktail of medications I had to take to fight my disease would turn my own mind against me, and that I would end up battling demons I never knew existed.
I don’t know what caused it. I don’t know if it was the steroid I have to take to help my body recover from the condensed courses of chemotherapy, one of the three anti-nausea medications I was taking to try to stay ahead of being sick, an anti-histamine or some other unnamed soldier-or perhaps a combination of some of the above. I just know that it was the darkest, scariest place I have ever been in my life.
Something I took caused my mind to come undone. I have never felt so out of control of myself. It bubbled up like a flood and I soon became unable to descern if I was awake, sleeping, dead or alive. I was completely beyond myself. I started to contemplate dangerous and completely irrational ways to try to test my reality or wake myself up. I lost most of my calibration on speed, distance, light and temperature. I seriously was unsure if I hadn’t already died.
It was, by far, the most terrifying experience I have ever had.
Worse, I could not make it stop. It was like being flung down a well and buried alive by a handful of dirt at a time. I was begging for it to stop, yet seeing no end in sight.
My biggest weapon against cancer is my ability to redirect this garbage disease into (honestly) the opportunity of a lifetime. The lense through which I have been able to filter this in my mind, and the hundreds of people I have supporting me, have given me a livable sliver of hope and optimisim in an otherwise overwhelming time. So when I started to fade under my own steam, I panicked.
Fortunately, somewhere off in the distance I knew there was a light burning for me. Even though I was felt like I was being buried alive I remembered one thing:
This is temporary.
My longest standing friend, Tricia (one hell of a warrior on her own, by the way) grounded me with that this past December when we met up over Christmas. It was one of those beautiful holiday nights and the snow fell in fat flakes as we ate dinner in a fancy restaurant that overlooked the water. We were dining and sharing about our lives and I cannot remember why it had even come up in conversation. She laid it out there in this common sense, completely flat, matter-of-fact way she has of redirecting all my prior ill-placed “truths” I have about life. “Everything is temporary.” She had said, confidently and coolly. I don’t think she knew that my world tilted on its axis when she said it.
I have a tendency to snowball things, or to get tunnel vision. It’s what propels me to prepare for and ovecome life’s obstacles. It’s also what sometimes makes me feel overwhelmed and a little spun out. But Tricia is one of those rock people. Those people among whom you moor yourself in a storm…in your mind…when you’re completely alone…as it turns out. And what I took away from her observation was that, nothing, not this wonderful thing or this terrible moment will live forever. It will all move along.
This too, shall pass.
Somehow, I was able to grasp on to that. It was a tiny tether but I used it to stay as calm as possible. I was alone in my house, not sure if I was dead, dying or alive, and I somehow managed to find a little vibration of calm. With that, I got into bed, closed my eyes, and fortunately (thank you GOD) fell asleep. I battled it out less alone later and throughout the night, but I made it through the worst of it solo.
I did not wake up feeling 100% better today, but the feeling wore off as the day went on. I’ve already started working with my oncologist to find a way to avoid that in the future. For now, I’m not taking anything more than I have to and it seems to be working. Not knowing what caused it, I have no assurances that it won’t happen again, and of course, that scares the daylights out of me. However, maybe now that I’ve survived it, the next time won’t be as bad?
I don’t know what the future of this treatment holds for me. I do know that I fought one hell of a battle and won. I’m still here. I got myself out of bed today, despite not feeling myself at all, and walked the dog around the neighborhood. I pushed myself and attended a conference with Tom, all the while fighting my inner demons that finally relented midday. All I know is, I kept going.
And I will contintue.
For this is temporary, and shall soon pass. Maybe I write some of this so that I, too can put it down and let it pass while I rest a moment with friends. So I can release the stress of this and let it go and move on to a new day tomorrow. Be well, friends and as always:
Give em’ hell.
9 Comments Add yours
I’ve never been through anything like you have, but all I can say is you’re a strong woman and you have your soul mate to take care of you. You’re both in for the long haul and no matter what, you will survive. I’m praying for you!!!
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That is true. Prayers are appreciated, thank you!
Katie (and Tom), just want you to know I’m thinking about you. I was hoping you were just having a nice weekend with family when your update was delayed. I recall my own cancer treatment (different kind of cancer) when I was a bit older than you and our boys a bit older than your girls. Definitely not pleasant but in the end you’ll come out on top. And have many good years ahead – for all of you. Joy
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It’s Cindy, I had posted a reply a few days ago… I’m guessing the anti-histamine you took was Claritin for the bone pain from the Neulasta shots? Maybe that is in fact what disagreed with you, or like you said, a combination, but I wonder if it wasn’t the steroids? I know they made me feel really strange, to say the least!! I can’t explain well as I’m not as gifted with words like you, but I remember feeling really not like myself, jittery like I had consumed tons of coffee, and almost hyper, this odd false-energy where my brain was trying to tell me me I felt super good and could run a marathon, but at the same time I felt like I’d been run over by a train, like I was had a bad flu…again, it’s hard to explain! It’s so weird to have such conflicting feelings and emotions! Makes you feel a little crazy! Just want you to know I don’t think it is just you! Sounds like you have a good plan, working with your treatment team to figure out what can make things better. I do think the fear of the unknown makes things worse, it will be easier next time just because you’ll have a better idea of what to expect! Also, check with your onco–I know I did not have to take the steroids after the A/C part, hopefully you won’t either! I know I was glad to not have to for the last part of my treatment. I’ll be praying for you and for your family. Your friend is absolutely right-this is only temporary…just for a season. Hang in there!!
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Thank you, Cindy. Yes, it is so very very bizarre. I do wonder if steroids aren’t part of the big problem. Trial and error, I guess!
Katie, ask your doctor about the anti-histamine!! I know EXACTLY the terrifying, buried alive feeling — it happened to me whenever I took Benadryl. Truly, some of the MOST-terrifying experiences of my life, feeling like I can’t wake up, or I can’t grasp the thing right in front of me, and can’t make it stop (but somewhere in a tiny corner of my brain, knowing that it wasn’t real). Having the darkest, most-evil, icky, graphic, adjective, adjective, adjective, thoughts and emotions … I swear to you, I used those exact words: “It felt like I was buried alive,” and “My whole mind betrayed me.” It took my doctor and I awhile to pinpoint it to the Benadryl, but once we did I SWORE I would never take it again. And honestly, I would almost rather swell up nearly to the point of stopping breathing than ever put it in my body. There are other drugs that worked for me to get the same relief–of course I was treating allergies, not chemo side-effects, but it’s gotta be worth asking about!
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Will definitely ask. Thank you!
::shudder:: I can still remember some of those experiences. I wouldn’t wish it on anyone. And it makes me a little sick wondering if my brain was capable of making-up some of that stuff–I blame the DPH.
I’ll definitely be going to bed thinking extra Happy Thoughts for you!
Katie, you are one hell of a good writer. Able to spin your feelings and these miserable experiences into words that leave Duane & Cynthia in awe! You are so right, nothing is forever. Keep on keepin on sweetie. Give em hell! We are praying and cheering for you and know that you will win!
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