After two years, I have just rediscovered the pleasure of reading. I had stopped enjoying it for various reasons… feeling nauseous, being blinded in one eye, being tired… But the main reason was anxiety. It’s amazing how difficult it is to read when one is anxious. My right leg would be bouncing, my heart racing, my head spinning, and I would look at a page and try to engage with the story. It was useless. I felt trapped. It was the same with TV, or long conversations. I think it’s what people have described as a state of “fight or flight”. It requires action and provides the adrenaline for it. My best mechanism for calming myself down was to go to sleep- but my restless, bouncing leg would drive me mad, waking me up many times a night. A hot shower was the next best thing, with a little lineup of essential oils for me to smell- peppermint, bergamot, lavender, juniper berry…
The process for getting over my anxiety and be able to enjoy reading again started with the bone marrow transplant. Getting to transplant had been the goal from the beginning. Setback after setback, the months went by, transplant always out of grasp. But it was finally here! Time for productive action! Of course, there was anxiety associated with it. Waiting 40 days for Erica’s cells to engraft (double the amount of time it usually takes) and watching my neighbor and fellow transplant patient engraft at day 15 and go home by day 17 was very difficult. But I felt I could handle the suffering of the transplant. It was nothing new… nausea, diarrhea, loss of appetite, gut pain… the usual chemo side effects. I was fortunate to only have one fever and not end up in the ICU. There was finally progress! I was either going to die in a few days, or I would make it through. No more wasting away on dialysis. No more pre-transplant chemo. This was it. And that felt GOOD.
My struggle with anxiety has also been linked with pain that leaves me stuck, not purposeful pain. Unpredictable pain too, like the gall bladder attack or drowning in my fluids or sepsis- pain that you don’t know is coming, and serves no goal. The depths of pain that have overcome me five specific times I can’t even describe because it is so terrifying to remember. These episodes have lead me to be deeply disappointed in God- I thought we were designed to die before reaching that much pain. After all, aren’t we breakable, fragile, made of dust? Shouldn’t we pass out if we reach unbearable pain? Yes… that would be nice. But it’s not how it goes. At least not for me. I thought birth would be a 10 out of 10 on the pain scale… it turns out the scale can get higher. It’s only 10 out of 10 till you experience something worse. You don’t know how bad it can get until you’re in it. I’m forever changed.
I have learned that pain medicine doesn’t work on me as well as it works on the average person, and that doctors look at how small I am and give me lower doses which definitely doesn’t help. So catheter placements and removals, graftograms, biopsies etc. I feel more pain. Doctors also are not good at predicting how painful procedures will be. I’m learning, however, that I can tell doctors that I want more sedation… at the risk of sounding like a junkie. There’s a high cost to plowing through the pain though, and there’s a cost to not speaking up. The more pain I endured the more anxiety built up. I’m not a hero for suffering more. Quite the contrary. Pain has broken me down hard. The stigma of pain medication being “bad” and only there in case you “really need it”, lead me to not complain. It was embarrassing for me to ask for pain medication. It still is. Sometimes I didn’t know if it was an option… Like when I had a 105 degree fever. I was shaking violently, burning up, feeling like I was doing fast backflips, terribly distressed, breathing fast, death pulling at my feet. Was I technically in pain? I had no sharp pains anywhere… I was certainly in extreme discomfort. But there was no medication to help. I writhed around for hours. Ice chips were my only comfort. Doing dialysis in this state was particularly awful. At the time I had the femoral catheter, which was hard to get working, and all my shaking just made the machine alarm angrily. I had on extra fluid to help control the infection, but that of course flooded my lungs and I couldn’t lie down without being drowned, and kept coughing up blood. If I could go back… if I could be in the room next to myself… I would have said “Sedate this girl! I don’t care how!! You are setting her up for months of anxiety and PTSD… she won’t want to go on living, knowing this kind of pain could be around the corner.”
Experiences like that one are what have lead me to say to Mike time and time again “Why can’t I just die?” These experiences haunt me. As family members have told me “You can’t just think about yourself- think of Mike and the kids. Think of how hard it would be for them if you gave up and died.” This makes me feel like no matter how horrid my suffering becomes I’m not allowed to stop treatment. So all I can do to comfort myself is project into the future: “Mike, once I’m off dialysis I’m never going back on. If my kidneys fail, I don’t care. I’ll die. No more dialysis.” But here I am still doing dialysis. “Mike, I’ll do one bone marrow transplant, but if it doesn’t work, I won’t do another.” “Mike, I’ll do azacitidine and venetoclax, but I’m never doing big chemo again.” Maybe if I can say preemptively what I don’t want to do he won’t be as crushed when the day comes and I chose death over treatment.
This has been my way of dealing with PTSD. Telling myself “Never again will it happen!” Either because I’ll demand pain meds or because I’ll refuse treatment. And now, months later, my leg no longer shakes, I’m sleeping better, I’m off the anxiety med, and… I can read.