That’s not a stock photo. This is actually my very own dining room where I’m filling a syringe to give myself a shot in the belly.
I didn’t think I could ever do that a week ago, but now I’ve doing it every 12 hours. It’s amazing what you can do in circumstances you wouldn’t choose. And who you can become with the right motivation.
I’ve spent the last two weeks immersed once again in the medical world.
I set out by myself at 4:30 a.m. just days before Thanksgiving for my trip to Iowa City. Paul stayed home with our high schoolers who had finals, and they all caught up with me the next day at my parent’s home in Missouri.
At the cancer clinic at the University of Iowa I saw a renowned NET specialist, Dr. O’Dorisio, who has researched and treated neuroendocrine cancers for decades. He ordered enough blood tests to fill up three pages of MY CHART and taught me about neuroendocrine cancer—and my tumors in particular. Their pathologists did a unique test on my tumor samples that indicate that my tumors hold positive receptors, which is good for further treatments and tests that target those receptors. “Like a lock and key,” he said, drawing a fun little picture for me.
Then, I received the “Cadillac” of scans for my disease, the GA-68 PET/CT. Go here to find out why it is so good. It was a long process, but after they injected the special gallium contrast mix, they covered me in a heated blanket and let me sleep. My claustrophobia abated in the scan itself, and seven hours after I arrived at the clinic, I left for a three-hour drive to Missouri.
The results of the scan did not show any visible metastatic or recurrent tumors. My family and I spent the next few days in truly grateful THANKS-giving.
Early the next Monday morning, though, several of the blood tests results came back still showing markers of disease, including elevated serotonin levels.
What does this mean? Serotonin is the happy medicine, right? Well, not exactly. In elevated amounts it can cause some bad problems like flushing, diarrhea, anxiety and a fast heart rate. All of these are symptoms that carcinoid patients can have and that I’ve experienced.
Crash. Back to cancer life again. When I saw my oncologist the next morning, he very kindly explained that with tumors found in the lymph nodes and metastatic disease found elsewhere, I’m past the curative stage of this disease. I translated that to mean that not one or three or ten surgeries can cut this out of my future completely.
So where does that leave me? With a great prognosis right alongside many other long-surviving NET patients, and a new treatment plan to keep the symptoms and growth of the cancer in check with a drug called Sandostatin or Octreotide. You can read all about it here. It’s not considered a true “chemo” drug. It is like the natural chemical in the body called somatostatin that inhibits the release of certain hormones.
And then my oncologist told me how this drug is administered—in a short acting or long acting shot.
“You’ll start with the short-acting one twice a day at home,” he said.
“Do I have to do that?” The realization of this next step arose in me.
He nodded. With more confidence than I’ve had in most other endeavors in life, I agreed.
But I held the first needle on the edge of my pinched skin, like I was going to ease it in. Like most of this experience, though, there is no easing into it.
“Just push it in quickly,” the nurse coached me.
And just like that, I expanded what I can do, overcoming what I thought I couldn’t.
The first two shots didn’t agree with my sensitive stomach, but after a brief respite with IV fluids, a new schedule for eating, and a powerful little bottle of anti-nausea medicine, I’ve now successfully made it through several days of twice-daily self-administered shots. As long as these hold, I will switch to monthly long-acting shots in a week or so.
Until then, it’s time again to gather the supplies and start the new routine.