We are on a journey, our life journey, and ultimately we’re all walking each other home. That’s one of the well-known songs written by Kate Munger (lyrics by Ram Dass) at Threshold Choir. Singing with the Stanwood chapter of this choir, Heart Songs, for about eight years, I’ve enjoyed giving comfort to these people at our local nursing home. My heart spills over with gratitude, and I want to share this journey of faith with you. It is a deep well of spiritual health that has sustained me, and will continue to do so, as I prepare for what comes next.
The First Symptoms/September, 2023
Bizarre. The night sweats. Even when I went through menopause, I was spared the hot flashes that many women endure. One day I was fertile, and the next day I wasn’t. What a lucky lady!
I never sleep naked. My favorite silk nightgown feels velvety on my skin, between me and the sheets. I used to sleep peacefully at night, eight hours almost every night, always waking up refreshed.
But for the past six months, I’ve been waking up soaking wet—and more than once. I always go back to sleep, thankfully, but it’s like sleeping under an open rain cloud. Not pouring rain, just a light sprinkle, but enough to get me soaking wet. WTF?
For the past couple of years, I’ve been complaining to Gene about my changing body temperature. He’d be sitting on the deck playing the guitar in 70 degrees.
“Hey Babe, come out and sit with me. It’s gorgeous on the deck now.”
So I join him, but after about five minutes I can’t stand the heat. It feels to me like 90 degrees instead. It’s so unexpected because as a former smoker I always used to feel cold in my hands and feet. Seventy degrees used to feel like sixty degrees to me. I chalk it up to nothing, just growing older.
Often with blood disorders, the indolent varieties can hibernate in you for years before the symptoms appear. Such a scary thought, to have a disease marinating in me for years while I gleefully carry on with my life. But that is the case with several blood disorders—no symptoms until the ones that you can’t ignore.
Like night sweats. They started last September, and at first I thought they were kind of exotic, a cooling way to lose some excess water in my body. I did need to wash my sheets more than usual. And my silk nightgown. I couldn’t believe the color of the wash water. Then I searched for another silver lining and I thought, “Yes, those are all my body toxins.” Well, maybe. But nothing else came out in the wash water.
Then, there’s the itchy skin. A dear friend gave me a jar of anti-itch cream her husband used before he died. A hallmark symptom? Yes, and messy. Even with the cream, the itching was so unbearable that I couldn’t resist scratching. Then the bleeding, and the scabs, and more itching and more scabs. C’mon, Marilea, use some self-control!
Scars form. I am now covered with old scabs and scars, mostly on my arms and back. I vow to stop giving in to the urge to itch. A small victory. Something, at least, that I have the power to control.
The power to control. Yes. I have become a Google Queen. In an effort to get out in front of whatever it is I have, I Google every disease that has my symptoms. It took one click to read that they are hallmark symptoms of most blood cancers.
Susan/s says
I’m so glad to hear more about the path of your health challenge, Marilea, knowing what strength and positivity you are bringing to it. Thank you so much for sharing!
Marilea C. Rabasa says
My pleasure, Susan/s. Hopefully it will offer support to others frustrated with the medical community.