I have to make changes.
My body has made changes and sacrifices but my behavior hasn’t changed to fit new limitations.
I want to be well. I want to not think about my difficult conditions. But when I do ignore them and pretend to be well, I can put my health at risk.
Thursday I had back pain. I told myself that I’d put on my belly band to provide some support on my lunch. I forgot to actually address that condition, so before I realized I was in more severe pain, I was out of breath with agony. I could no longer pin point the location or source of pain causing me to take short breaths, and then I was short of breath, and then I started worrying if I was having a bad reaction to Taxol.
I went home. I drove slowly on back roads to lower my risk of dangerous car wreck in case I got distracted by pain or light headed. It would be easier and safer to stop on a suburban side road than the busy Niagara Falls Boulevard.
I called Nick and told him to expect me in 15 minutes. It was 17 minutes. Nick got me comfortable in bed. I called Roswell to let them know I was concerned.
Kerri from Roswell called me back by the time I was calm and relaxed and thinking clearly. Kerri and Nick and and Candy I decided that I had two options. Go to an ER for another blood transfusion if I was feeling low on hemoglobin again. DeGraff hospital would be a perfect fit because they have blood, hydration, breathing treatments, and relatively few ER patients to an adequately staffed ER. I could have all my concerns met and resolved efficiently with less strain on the medical providers.
If this option seemed like overkill, then I could come in tomorrow and have Roswell draw and examine a CBC to make sure Taxol hasn’t tanked my white blood count, red blood count, hemoglobin, ANC, etc. If I was feeling up to that ER visit, I would get reassurance the next morning and take any necessary steps to fix me up.
To make the decision we discussed all of the contributing factors. High dose methylprednisone would have a lasting boost on me for days, and its positive effects would be wearing off by now. Especially if I had unknowingly overdone activities in the days when I felt good (I had). I’m still coughing from this stupid cold; seasonal allergies are in effect; my asthma is aggravated. I have general anxiety; the fear of this new drug treatment going poorly has me worried, and I don’t know what side effects to expect. Back pain is normal for pregnancy; I hadn’t worn my back support; I had sat in uncomfortable positions all day.
I decided that I would take a Tylenol to see if that reduced my biggest concern: back pain. It did in only 30 minutes. I knew then that the pain had been the catalyst for every other symptom. I was breathing fine, I could speak normally, I could get up and walk around fine now. In fact, I was feeling well enough to play with George. I sat on my knees and leaned on my hands while he climbed up my back and massaged it with boney little toddler knees. He giggled and burrowed his face in my neck. George had mom’s undivided attention and love, all while mom sat, rolled with the punches, and stretched. The best and safest way for me to engage 100% with my toddler son is down on the ground on all fours.
I discussed all of this with my best care provider, Candy. She impressed upon me that the activity that I give to George, as safe and as low impact as it is, is still far more strain than I had while I was pregnant with George. The strain of chemotherapy on a non-pregnant body is enormous. The exertion of pregnancy on this asthmatic is considerable. The fact is, my body is under incredible demands at rest. I need to breathe deeper. I need to dig deep and go slow just to keep my body at homeostasis. I need to make conscious changes to my behavior so that I can get through a day under my own power.
I could choose to continue on my active instincts, but the natural consequences are unpleasant. Frightening. Exhausting. So by recognizing the new limitations, and restricting my exertions I can have better quality of life for now.
I am saddened by this. I don’t love letting chores go undone, I don’t love sending George off all day to spend it with family that can keep up with him. I don’t love not nesting and decorating my home for my daughter in a frenzy of activity. I don’t love not shopping with my friends. (The phrase shop ’til you drop is boring when you drop after one store.)
I also don’t love not feeling confident being left alone. If I’m alone, I’m only accountable to myself, and I take that seriously. I don’t do any laundry, I can’t reach the bottom of the washer any more. I don’t vacuum, the thing’s too heavy. I might wash a few dishes, but that leaning hurts my back. I can’t go shopping in store alone, what if I have a medical crisis? I’m lonely when I’m alone. It used to not be like that.
I normally love alone time. I put on a podcast or playlist, I work in a manic state until I’m exhausted, and then some. And then I clean myself with all the lotions and potions. The productivity high sustains me!
Its different now. I feel unproductive when I’m alone. I don’t feel like myself.
The last outlet I seem to have is my career. Its a desk job in an office by myself where I can pace myself and get lost in feeling productive. The trouble is, (and this is how I know I have to be careful when I’m alone), even here I can forget to take a break, stretch, keep on top of my back pain. Its so tempting to lose myself in work, escape my illness and do something I am good at. I need to relearn how to manage those temptation so I can have health and safety and sanity.
Day by day. Its 8 PM. Time for a biofreeze back massage, shower, and sleep.
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