A Mystery, Still Unsolved

Kirsten’s collarless neck

Again, we wait. After Kirsten’s most recent visit with Dr. MacGillivray, she underwent an ultrasound of her lymph nodes. Dr. MacGillivray thought he saw a mass there in one of the previous imaging studies. The ultrasound confirmed the anomaly wasn’t an artifact, so a biopsy was done immediately in the office. We should have the results this week.

Finally, a bit of good news: Dr. Florman said Kirsten’s neck has sufficiently healed for her to remove her neck collar. Kirsten had been wearing it continually for three months; she wore it in the shower and to bed, and every minute in between. The only time it came off was when I changed its soaking wet pads after showers, while she lay supine and completely still. Soon, when she is able to comfortable and confidently rotate her head, she will again be able to drive her car. In three to six months she will be able to resume normal activity. That would be true if her only problem was a fractured neck. Her soft and brittle bones will prevent “normal” activity for a very long time.

Kirsten’s screwed

The good news doesn’t stop there. Dr. Evans, Kirsten’s oncologist, informed us that the iliac crest biopsy is negative for cancer. The benign result from pathology is good itself, but also means we still do not know the primary source of the tumors. In that way it is a setback. In another attempt to locate the source, Kirsten will undergo an upper endoscopy and colonoscopy this week. This whole exercise is beginning to feel like a detective mystery, but less fun.

If the primary source is detected, and the lymph node biopsy is negative, Dr. MacGillivray will likely remove the primary tumor source and resect and ablate the liver lesions. This would be palliative, as no procedure will be curative at this point.

Kirsten’s estrogen levels are too low to be detected, so her gynecologist has tentatively prescribed birth control pills to supplement natural production. This renders the IUD she’s had for the past four years unnecessary, so she had it removed this week by Dr. Manning. Kirsten hasn’t started taking the birth control pills while Dr. Manning reviews her medical history to determine if it might be too risky to do so. Apparently, birth control pills increase the risk of blood clotting, which is a concern since Kirsten underwent embolization following her bilateral adrenalectomy.

Dr. Rockwell, Kirsten’s endocrinologist, started her on a medication to boost her bone density. She also advised Kirsten to wear ice cleats during inclement winter weather, as any fall would probably result in fractures.

Kirsten is trying to reduce her use of narcotics to control pain, as the side effects are miserable to endure. Obviously, this means living with more pain than is comfortable. When you turn one knob, the others must be subsequently adjusted. The balance seems never to be right.

Today I discovered NET Cancer Day, after they had posted a link to this blog on Twitter and Facebook. After visiting their website, I realized why Dr. Agus had referred to Kirsten as a zebra. It’s a very appropriate analog.

NET Cancer Day mentioned my blog on Facebook

3 Comment

  1. “This whole exercise is beginning to feel like a detective mystery, but less fun.” — I concur. I do appreciate that my doctors are all communicating with each other. My primary care physician today made me feel better about understanding and addressing pain control.

    Thank you for posting this, Brent.

  2. Nola Wilkinson says: Reply

    Thanks for the update. We care a great deal about Kirsten and are grateful for every piece of good news.

  3. […] she told me Dr. MacGillivray had called her in the morning to give her the results from the lymph node biopsy from last week. He had discussed the pathology report with her oncologist, Dr. Evans, who concurred that she does […]

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