The next test that I'll be having is the endoscopic ultrasound. http://gi.ucsf.edu/proc_eus.html has a good basic description of it. At first they told us they couldn't fit me in until March 11. I said I'd take any cancellation and please try to get me in sooner, because I couldn't imagine waiting two weeks more. As you know, it's the waiting that's hardest.
Anya (daughter-in-law) offered to call D-H every hour on the hour until they got me in earlier, but fortunately they found me a slot tomorrow at 7:00 a.m. Fortunately for them, because she'd have done it -- a one-person phone-jamming system.
The procedure, including finding my veins for the IV and the recovery, takes several hours. We don't expect any answers immediately, especially because Dr. Sutton will present these results plus everything else to the Oncology Board, which meets once a week and brings in expertise from all areas to determine the most effective treatments. He didn't say which day they meet.
By the way, several people have mentioned that according to the research, this form of cancer is typical of Southeast Asian men. How am I going to break the news to Jerry?
Thursday, February 28, 2008
Wednesday, February 27, 2008
How fortunate I am
Here's what I have on my side as I face this:
- My health (otherwise) is good; a few aches and pains from arthritis and HMS, but the basic systems (circulatory, respiratory, etc.) are strong. I exercise and eat right.
- I couldn't ask for a better social support system. Family, friends, the groups I belong to, even the various on-line forums I post on provide me with continuing strength. (I'll write more about this later, because right now it makes me teary.)
- I have faith in the oncology and surgical departments at Dartmouth-Hitchcock (besides, I checked them out).
- I have no other major stresses or concerns in my life. I can focus on beating the cancer.
- I have insurance. We can afford this without worrying about its breaking us financially.
- I have access to information and the ability to sort through it and understand it. This means I have some informed say in my treatment.
- My life is full of other interesting things: writing, music, venting about politics, knitting and sewing, yoga and pilates, and more.
- Generally, I am optimistic, determined, and tough, not to mention being willing to rip things out and keep trying until I get it right.
So there.
Tuesday, February 26, 2008
A bit of background
I have adenosarcoma of the common bile duct, me and about 4,000 other people in the US. When I had breast cancer, I was one of a crowd. Jerry and I went up to Dartmouth-Hitchcock in Lebanon, NH, yesterday for a CT scan and consultation with the surgeon, who recommended further tests. So far, I've had bloodwork, an ultrasound, another CT scan, two ERCPs, and an MRI. The next testing will be an endoscopic ultrasound. I'm probably the only person you know who has three gastric surgeons.
The problem with cancer in this particular place is that there are some major blood vessels crammed in with the common bile duct, so that surgery has to be delicately done. I found myself looking at the surgeon's hands, which are broad, with short fingers, and that chapped look from washing a lot. He said that a hospital that does nine Whipple procedures (yes, that's really the name; google it) is considered high-volume. He himself did eighteen last year, so if the surgery is an option I couldn't be in better hands, whatever they look like.
The question is whether the surgery will be an option, because of the possible involvement of the blood vessels, and that's what the further testing will tell. It may be possible to start with radiology and/or chemo to shrink the tumor before surgery. We're waiting for the next appointment.
So how are we doing?
My mind is all over the place. It’s hard to grasp the idea that at best, we’re in for several weeks (months?) of physical and mental pain and suffering followed by years of knowing that every step might be back into the quagmire. At worst, I could be dead in a few months. I’ve always been so afraid of being dead, not of dying so much as of just not being here. The world is never too much with me. I will never have enough of it.
I cling to Jerry as though without him I would be swept out to sea. I can't imagine going through this without him, without family and friends.
The problem with cancer in this particular place is that there are some major blood vessels crammed in with the common bile duct, so that surgery has to be delicately done. I found myself looking at the surgeon's hands, which are broad, with short fingers, and that chapped look from washing a lot. He said that a hospital that does nine Whipple procedures (yes, that's really the name; google it) is considered high-volume. He himself did eighteen last year, so if the surgery is an option I couldn't be in better hands, whatever they look like.
The question is whether the surgery will be an option, because of the possible involvement of the blood vessels, and that's what the further testing will tell. It may be possible to start with radiology and/or chemo to shrink the tumor before surgery. We're waiting for the next appointment.
So how are we doing?
My mind is all over the place. It’s hard to grasp the idea that at best, we’re in for several weeks (months?) of physical and mental pain and suffering followed by years of knowing that every step might be back into the quagmire. At worst, I could be dead in a few months. I’ve always been so afraid of being dead, not of dying so much as of just not being here. The world is never too much with me. I will never have enough of it.
I cling to Jerry as though without him I would be swept out to sea. I can't imagine going through this without him, without family and friends.
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