Over the last month, life has found a certain rhythm, a routine if you will. My day begins around 9am, with breakfast and meds right after. By 10, I’m getting hooked up to my fluids – 1 liter of lactated ringers. By 11:30, my fluids are done and I’m ready for a nap. Some days it’s a long nap, some days it’s not. Most days though it’s a long nap. I’m usually up again between 2 & 3 and awake until 9 or 10. Bedtime is at 9 or 10, whenever I lose my first wind. Then I’m up a couple times at night to empty my bag and then the day starts all over again.
Overall I’m dealing with a lot of fatigue along with some joint issues. A few weeks ago I started having some joint pain out of nowhere, including in my fingers. I’m still having output issues and a lousy appetite.
I finally saw my oncologist today and cancer wise, I’m still in the clear. My scans all looked great. He echoed seeing an endocrinologist, so I’ll be making that appointment tomorrow. He also ordered some basic thyroid blood work that I’ll have done tomorrow. Thyroid issues would explain my issues. I also have an appointment with a nephrologist the first week of October. My next oncology appointment isn’t until 2021!
I’m beyond ready to go back to maintenance appointments. I miss feeling really good. I’ve been thinking about last summer and how amazing I felt. I had a great big party celebrating a year cancer free and then a few weeks later traveled to Utah for a friend’s wedding. I had times this spring where I felt really good, but not in awhile. Last summer I was finally starting to drop the length of my naps. Then I had my big surgery and naps were back in full force (as expected). After that, I had naps nearly every day, but I did well after the nap. These days, I have my nap and could still go back to sleep. And sleep. And sleep.
I’ve been reminded again that once you’ve been diagnosed with cancer, there’s no going back to the way things were before. Not emotionally, not physically, not medically. Even with the great strides made in cancer treatment, it’s still a bit of a scorched earth approach. And in the end, you do what you have to in order to get to NED and stay that way. But it leaves scars. It can easily leave behind additional medical issues, some more immediate and some that crop up down the way.
For me, it’s left behind an ostomy and the issues and complications it brings. It’s left me with an ovarian fragment to be dealt with one day. It’s left me with “scanxiety,” despite being pretty good at dealing with anxiety. Even once you get to NED, there’s no going back to before.
One thought on “Finding Routine”
You are one of the strongest women I’ve ever met. Your strength is amazing. And I have to admit I looked up nephrologist because I have no idea what that was ha ha. You hang in there and know that so many people are there supporting you in this fight. Having to go through all of this during this pandemic I just can’t imagine how much harder everything is for you. Be safe keep strong sending love, Jeanne K
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