Originally, when I was diagnosed, they took a biopsy of my liver because this is the organ which they could see masses in. The biopsy revealed neuroendocrine cancer cells, which were testing positive for a "marker" called TTF-1. This marker indicated that the primary (or original) cancer site was either in the lung or the thyroid, but both of those tissues have turned up clean.
Since then, we have learned that sometimes the cancer will test positive for TTF-1 but not originate from those two organs, and instead be located in the "gut." When the doctors say "gut," they mean: pancreas, intestine, colon, ovaries, or cervix. However, again, the PET scan, MRI, CAT scan and octreotide scans have shown nothing anywhere but in the liver.
The doctor said on Friday that in approximately 15-20% of neuroendocrine cancer cases, the primary is never found.
This may sound very confusing, because it is... and we are consulting with two oncologists to get the best treatment and the best expertise possible, in trying to figure this all out.
In the meantime, last week I did my 3 days of chemotherapy: Tuesday, Wednesday and Thursday (I now have two weeks off before starting my second round of chemotherapy). It was extremely difficult, due to the fatigue from the chemo, and the zombie like effects of the drugs they use to control nausea. However, by Monday I was starting to feel better and am happy to report that I was able to travel on a trip that had been planned months ago, with my parents and family to Gulf Shores. So far I am feeling better each day.
One of my good friends told me that if I was going to feel crappy due to the chemotherapy, then why not do it on the beach. I agree, and took her advice to heart. It seems like good medicine to be in the sun, listen to the waves, have your feet in the sand and to be around loved ones.
Dawn Berlynn
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| Sleeping on the beach. |
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