Another New Normal
The “New Normal” is a buzz word on social media sites for people with chronic illness such as multiple sclerosis, cancer, Parkinson’s disease and more. The adjective ‘new’ is a critical component of this expression, as there is little stability or consistency in any of these changed statuses.
My first experience with a new normal status was when I allowed the diagnosis of relapsing remitting multiple sclerosis and accepted the prescription for nightly disease modifying drug (DMD) injections. An entirely new routine became part of mine, and of Rick’s. Laying out the equipment for before, during and after the injections, all at least immaculate if not sterile became the new norm. Time had to be planned at the end of each day to perform this injection. We did our best to keep things positively framed, but the afterburn was undeniable, and I would try to hide it from him and he would try to help me see it as a normal reaction, After four years and increasing depression and anxiety easily attributed to these unwanted treatments, I stopped the DMD and, whether physically or emotionally respondent to this change, began immediately feeling better. I felt I had regained my self … I had denied and rejected that temporary ‘new normal.’
Retiring brought about another ‘new normal,’ both personally and financially. I had carefully planned to pay off both our vehicle and our mortgage loans at retirement by doubling up on payments in my final years of teaching – final years that would typically bring a moderate increase each year. But my retirement followed yet another contentious bargaining that resulted in less than typical increases, to no increase at all in my final year. And that final year itself came at least two and possibly three years before I might have chosen, due to my failing memory and waning energy caused by the emotional toll of the injections. Rick and I adjusted to our new financial status, retired, and abandoned our plan for double loan payments given a reduced income. During the first year, there was no discretionary money in our budget, and savings were dwindling as we tried to adjust payment schedules to the new level of income. A year later, Rick’s pension kicked in earlier than we would originally have chosen, but necessarily. We were back on a level field feeling confident that, with luck, we would hit no other unexpected expenses. I wrote a memoir of our experiences and we began to breathe easier.
But by the following spring, the diagnosis of malignant melanoma along with basal and squamous cell skin cancers, and osteoporosis and scoliosis required more medical travel, appointments, procedures and prescriptions. Our first summer back on our feet financially saw repetitive surgeries and related expenses. Back and forth we drove, and week by week Rick help me to change dressings on wounds and perform follow-up care for sutured sites. The last round of that first summer of surgery ended in late fall. .Five confirmed cancer sites and eight surgeries later the winter saw continuing three month check ups and minor cryosurgery procedures performed not with the surgeon but with the dermatologist. Spots on my hands, and on my forehead were frozen with liquid nitrogen and routinely took a few weeks to crust, dry, flake and clear. A suspected site on my nose, and on my forehead, were biopsied but declared negative for more cancer. And then once again, in spring time, another site for surgery was emerging; this one demanded yet another new normal. But it wasn’t just the same old same old. My tolerance was wearing thin. Depression was feeding off low tolerance. Anxiety was again rising. I had to say no at some point. Denial would be my new normal.
This time, though, denial was short-lived. After visiting the surgeon to talk about surgical alternatives, I came home to think things through. To refuse surgery for the sake of refusing, with the thought that I needed to be in control of something … I needed to feel I still had choices and not just continued surgeries … was not valid thinking. I had to go back and accept the surgery. I was writing the second memoir – a sequel to the first, and my readers’ reviews of the first were full of encouragement and confidence in me that I was a strong person who would do the right thing. That I had no idea which was the right choice was difficult to admit, but I had to admit it, at least to myself.
The sequel was released to the public this past week. And my chin surgery was this morning. Once again, it took more than a single cut to clear the margins of squamous cell carcinoma. But the second cutting was sufficient, and the sutures were put in. Tonight I have a large pressure bandage on my chin, and was told I may have a bruise extending down the front of my neck in a day or two. Tomorrow morning Rick and I will remove the pressure dressing and clean and recover the sutures with a smaller bandage, and then I’ll be off with a friend to the quilt show in Lowell.
My new normal can be one of living with the ongoing chronic condition of cancer. Rick and I can still be involved in all that we want to do, despite the ongoing findings and surgeries and recoveries. One chronic condition is much like another. The names are different, the procedures and prescriptions are different, and the limitations vary unpredictably as time goes forward. Whatever the new normal will be, it will be temporary at best. What comes next is the greatest unknown. How to deal with it is waiting to be discovered, and done.