As a colorectal cancer survivor, “knowing your numbers” is practically a lifestyle. The Carcinoembryonic Antigen, or CEA, is a tumor marker that indicates the activity of cancer cells in the blood stream. Normal CEA is between 0 and 2.5 nanograms per milliliter of blood. In cancer land, this is number we and our oncologists pay attention to the most during and after cancer treatment. I get my level measured once a year. A CEA above 2.5 starts causing all of us a little stress.
People with high blood pressure, high cholesterol and diabetes pay attention to specific numbers related to their conditions.
Over the last couple of years, I’ve become quite familiar with my blood calcium level because it was high. Not crazy high. Normal blood calcium is 8.5 to 10.2 milligrams per deciliter. My level was in the neighborhood of 10.8 and 11.2. Again, not terribly high but, according to some of the research I read, slightly high blood calcium can be the most damaging over time. And, on the cancer alarm side, a high calcium level can be an indication of cancer activity.
High blood calcium, or Hypercalcemia, can cause kidney distress, digestive problems, bone loss, memory loss, lethargy, fatigue, depression, and heart problems like cardiac arrhythmia.
Hypercalcemia is caused by an overactive parathyroid gland or glands. There are four parathyroids, located on each of the back four corners of the thyroid. Benign growths on one or more of the parathyroids send them into hyperdrive, called, big surprise, hyperparathyroidism.
Hyperparathyroidism is determined by a blood test to measure Parathyroid Hormone, or PTH, in the blood. Normal levels fall between 10 and 55 picograms per milliliter. When my PTH was measured a few months ago, I was at 95.
No wonder I felt like crap. It wasn’t debilitating, but I had been sleeping poorly, and felt tired and rundown by the end of the day. On the outside no one could tell, but I could tell something was not right.
My brain was foggy too, and toward the end of 2022 I had a bit of a come-apart from stress and anxiety.
Something was definitely wrong.
That’s why I pushed so hard to get answers about my high calcium number. At first, my medical team was concerned I was taking too much calcium through a weight lifting supplement or by taking too many antacids. Neither was the case, but I stopped taking any and all supplements and antacids just to be sure.
The number remained high.
Too much cheese? Red meat? Spinach?
Nope.
My doctors monitored and I kept asking. Late last year, I pushed to have a blood draw done at my cancer treatment center so my oncologist’s office could put it in context with other numbers, like my CEA.
CEA was normal, calcium was high. Following my annual appointment with my oncologist in December, he sent a note to my primary care physician essentially demanding that he “deal with this.” My doctor called me. “What does that mean?” he asked.
“Can we run a PTH?” I asked.
So we did. PTH of 95. Immediate referral to an endocrinologist and ultimately to the surgeon.
(SIDEBAR: while having vitals taken, my endocrinologist asked if anyone had ever told me that I had an irregular heartbeat. Having just seen all of my major doctors, including my primary, oncologist and radiation oncologist, nothing was mentioned. I got COVID in late January/early February, which I’m convinced is the cause of what ultimately was Atrial Fibrillation. But, I digress.)
On May 26 I had a parathyroidectomy. Two of the four glands were removed … and they were located in my chest near what remains of my thymus. Nowhere near my thyroid.
During surgery, the surgeon removed the affected glands then ran a blood test to measure my “new” PTH. My level dropped to 30. The surgery was a success.
I’m now three weeks from surgery and I feel like a new man. My energy level is back. The fatigue is gone. My mind is clear — or as clear as it can be. My voice is still raspy from the surgery, a combination of being intubated and my surgeon working around one fo the vocal nerves pretty intensely. She promises that my voice will return and the pack-of-gum-sized lump in my neck at the surgery site will disappear too.
If there are two takeaways from my story it’s this: Know your numbers, even the seemingly obscure ones. And, if you know something is wrong, keep pressing for answers. Even if it takes times, knowledge and self-advocacy can change your life.
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