Zebras

The zebra is the symbol used for carcinoid cancer awareness.  We first learned about this when we read a book called Zebras and Stardust which was written by my new friend, Mary Girsch-Bock, about her sister's struggle with the disease.  Mer found the book online soon after his diagnosis, and it really helped us understand this type of cancer.

Dr. Woltering was the one who came up with the zebra idea, and there are all kinds of zebra things in his clinic.

The reason a zebra is associated with carcinoid cancer is because generally, when people hear hoof-beats they think the sound must be coming from wild horses.  However, sometimes instead it turns out to be a herd of zebras.

Many patients with carcinoid cancer are misdiagnosed for many years because the doctors they visit think the symptoms they're having must be due to something else.  I read that doctors are taught in medical school to look for horses (or common problems) first instead of looking for zebras (things that are rare or out of the ordinary).  This has led to a lot of suffering for many carcinoid patients.

We feel very blessed that Merlynn's cancer was discovered early by a wise primary care physician.  We were also happy when we heard from Dr. Boudreaux (the surgeon who will most likely perform Merlynn's surgery) that since 40% of his liver has tumors and he still remains symptom free, he probably will never get the debilitating side-effects so many others do.

I can already tell by the way Merlynn's been talking today that he's probably going to opt for the surgery.  He's been trying to comfort me and help me be at peace about it.  I'm not there yet!

Decisions, Decisions...

We returned yesterday from our visit with Dr. Woltering in New Orleans.  He's basically a nice guy and pretty funny.  I can tell he truly is brilliant and very dedicated to his work with carcinoid cancer.

There's a map on the wall in his clinic showing where all of his patients live. Some of them have come to see him from as far away as Asia and Australia. 

I appreciate very much all the time he spent with us.  However, some of his language was rather crude, he tried to make us feel stupid after some of the questions we asked, and he called Utah a big hole which REALLY bugged me!  (He may have a stereotypical view of OUR beautiful state, but holy cow!  He's working in LOUISIANA, a state that doesn't exactly come across with an outstanding image in my book.)  The medical facilities at Huntsman Cancer Institute and IMC seem far superior to the one we saw in New Orleans.  I'd say the hospital there is a small step up from the Plantation Rest Home. The grounds were a mess, and it just seemed really old and smelled kind of bad.  Hopefully, it's better than it appears, since we may be spending a lot of time there.  If only we had some good carcinoid specialists HERE!

Dr. Woltering's plans for Merlynn's medical care have put a big pit in my stomach.  I need to have faith that Heavenly Father will guide us and won't take Merlynn before his time, but it scares me that Dr. Woltering and surgeon, Dr. Boudreaux, in New Orleans feel strongly that Merlynn's primary (original) tumor must be removed. It's the one sending out most of the bad stuff. The problem is, no one's been able to find it. If it's in the tail of his pancreas, it might not be too horrible to remove, but most likely, it's in his bowel. They will have to open Mer up and go through all of his intestines inch by inch with their hands, feeling for tumor(s) with their fingers.  If tumors are found, they'll have to cut out those parts of his bowel. 

Also, Dr. Boudreaux said he thinks he can remove up to 70% of the tumors in Mer's liver surgically. That would be great if all goes well, but I have so much fear about them cutting him up! What if he bleeds too much or there's a blood clot? What if he gets an infection? What if his bowel doesn't heal and he suffers the effects for the rest of his life? What if he ends up in constant pain?  We were told we should "get on top of it" now while the tumors are stable because it might be too late later on.  It all seems so extreme!  It's so hard to have him go through these procedures when he feels so good right now! 

It's somewhat shocking to have gotten such a different opinion while we were in Louisiana than what we've received from the doctors here in Salt Lake. The Utah doctors just want him to keep taking the shots for as long as they work, which could be up to 10 years. The New Orleans docs feel they could give him 20 years by doing it their way, and he'll probably die of something else before the cancer takes him out.  It just seems so risky to me. Of course I'd love to have 20 years here in mortality with my Merlynn, but I don't want to lose my chance at 10 years either.  We'll see...We'll fast, pray and spend some time in the temple and then decide.