The Ball is Rolling

Friday, March 30, 2012: Today was my first consult appointment with Dr. Courtney Scaife, Oncology Surgeon at Huntsman. I know I moaned and groaned about not having a plan the last couple of days, but things have actually been moving (though a bit too slow for me). Nurse Karen did call me back the day I was having a tizzy fit and told me that the meeting with Dr. Scaife WAS part of the plan. Okay? Got it? Yep. Then, Thursday morning, Jennifer with the MORD Study/Trial for Dr. Antebacka (sp?) called to see if she could come into the consult meeting with us, just to hear what Dr. Scaife would say about the surgery. I like Jennifer a lot - even found out that she lives just a few streets from me! I think she'll be a great support, with or without my involvement in the study. She also asked me if I was leaning one way or the other, and I told her that I was considering being part of the study, but I wanted to hear what Dr. Scaife had to say. She said she had been talking to Dr. Grossmann and team (I love when they say that - it means I'm being thought of even after I leave their offices) and asked if I would be willing to sign consent forms and do some lab work, just in case I decided to participate in the trial - that way, I could save myself a trip to the hospital. I agreed. It was a PLAN!

Linds and I got to Huntsman about 9:45, walked right past our normal Clinic 2D and walked down another (unfamiliar) hall to Clinic 2E. Filled out a bunch of medical forms (again - it's neverending) and was shown to a room. Right away, Jennifer found us and we talked a bit about the trial and what I'd need to do to start the application/screening process that day. Then, Angelique from Social Work, came into the room and told us about her services - that she is there to help with "emotional peace, spiritual peace, and financial peace." Ahhh. That's comforting. Then, in comes Dr. Scaife's nurse (yes, it was a bustling little room for a while there). She asks questions and takes the papers Linds & I have been filling out and tells me they have to do a physical exam. Off comes the clothes. Into the fashionable gown. My ugly toenails poke out from under the scratchy hospital blanket (gotta get that pedicure SOON). She comes back in, does a very quick exam, including a rectal exam "because one of our patients ended up having rectal cancer that we didn't know about and now we have to examine everyone." Oh joy. I'm sure Linds wanted to run from the room - I know I did. I think that five seconds of privacy invasion upset me more than anything else today. Bleck. Finally, I change back into my clothes, Jennifer comes back in, and so does Dr. Scaife. She's thin, blonde, and very intelligent and warm. The first thing she does is straighten a picture on the wall, confessing her OCD and saying it would have made her crazy throughout the consult. I told her I'd noticed it, too, but hadn't remembered to fix it after getting dressed again. I liked how she got right to the point, bringing out a small stack of three or four black and white copies of my scan from last Thursday. Holding them on her lap - right side up for me, upside down for her - she proceeds to point out the unknown gray blobs on those scans, which end up being my stomach and my pancreas and my veins and my arteries. And there in the midst of all those hard-working body parts is a little white-ish spot, the blasted tumor. She shows another "slice" of the scan, this one a little bigger than the other, and once again, there is that slightly-off blob by the head of my pancreas, next to a lighter gray vein. She turns the papers over and starts to sketch - her "Etch-a-Sketch" drawing, she calls it. I tell her I'm impressed that she can write so well upside down. She outlines the stomach, the liver, and the intestines and shows me exactly where the tumor in question has lodged itself. Several times during our conversation, she says, with confidence, "I know I can get this out. I know I can help you become 'NED' - no evidence of disease." The whole issue at this point is, how extensive will this surgery be? Dr. Scaife explains the two scenarios: As she sees it through the "eyes" of the scan, this "lesion"/"tumor"/"whatever" looks like a lymph node. The problem is that she won't know for sure until we are in surgery. If it is a lymph node, it's a simple removal - lift up the pancreas, take out the node, send it out for testing, and clean out anything else that looks the teensiest suspicious. Surgery takes 2 hours. Hospital stay is 2-3 days. If this thing is touching the pancreas or has lodged itself anywhere near the nose of the pancreas, it's a little more complicated, but can still be removed fairly easily. If it has invaded an area more prominent in the pancreas, that calls for a more complex surgery - the Whipple. She said she's done many, many of these surgeries, so she feels very confident that she can remove the melanoma entirely. But this surgery, as Dr. G told us previously, is not fun. Dr. Scaife said it's an 8-hour surgery. Hospital stay is 7-10 days. On the diagram, she showed us how a whole section of my inner workings would be taken out (including gallbladder and ampula and duodenum) and then A would be connected to 1 and B would be connected to 2 and C would be connected to 3 (you have to see her awesome "Etch-a-Sketch" to get the whole picture - I have it on email if anyone is interested). The nitty gritty is that the incision for both surgeries would be the same - a vertical line from the bottom of my breastbone to just above my belly button. 10% of patients have a problem with their stomach "waking up" after the Whipple and have to have a feeding tube, sometimes for as long as one month following surgery. 20% of patients have a problem with pancreatic fluid "leaks" and have to have a drain. "Let's hope you're one of the majority who goes home without these complications," she says, and I wholeheartedly agree. She said she operates on Mondays and Tuesdays and that she usually schedules two weeks in advance. That helps me know when this is all coming. All in all, I feel completely confident in her abilities and her assurance of success. I trust her with my life - literally. Now, the question is - do we do the study where we have a 2 out of 3 chance that I will have the surgery (with or without follow-up treatments)? The timeframe is important here. If I decide to do the study, lab work will be done today - blood tests, urine test, and mental/physical forms filled out. Samples and forms will be sent to the John Wayne Cancer Center in California and evaluated with results to follow in about seven days. If all goes well with the screening and evaluations, I'll be placed in an "arm" of the study: surgery without follow-up treatment, surgery w/ BCG injections to follow, or best medical practices (which would be treatments before surgery). The best news was when Jennifer said that if by some chance I was put in the "best medical practices" arm and I really wanted to go ahead with the surgery, I could drop out of the study at that point, no questions asked. That made me very happy. I want to be a part of the trial because I think trials are important to help others down the road, but I also want this thing gone and out of me before much more time passes. To know that I could just say, "no thanks" to the trial, and go on with the surgery and whatever else Dr. G recommends was a relief. So, we got the ball moving. I peed in a cup, I bled into a few tubes to send to the John Wayne Center, and I filled out a questionnaire that asked me over and over if I felt anxious, angry, weary, depressed, confident, fearful, sad, compassionate, etc. etc. over the past week. I told them this was not a good week to ask me these questions since my cute mommy had broken her shoulder just a few days earlier! And I signed on the dotted line to participate in the MORD Trial (don't ask me what the acronym stands for - I have no idea!). I felt a spirit of peace, and that's what I prayed for. I don't feel pressure to do anything I don't want to do and I know that whatever I have to do, it will be the best for me. It's very reassuring.

Now, tonight is another ball of wax altogether. I'm totally drained from today's experiences and the whole past week of ups (sitting at the feet of the General Relief Society presidency and board was AWESOME) and downs (Mom's fall) and all-arounds (busy at work, taxes filed, filling out forms to apply for Disability...). I worked for a while, but I can hardly keep my eyes open. I am done. I'm going to bed. Wonder if I'll dream and what scary monster will visit me tonight...

(Picture: Grammy and Knox, who celebrated his first birthday March 28. I remember how grateful I was last March 28 to see him born and be with my Chelsea, just 11 days after major neck surgery. A miracle indeed...)