Self Advocacy and Hope

Hi all,

The last couple of weeks have been a flurry! Lots of doctor appts over the holidays but a renewed spirit of hope. Here's what I've been up to:

8/07: Stage 3 cc, surgery/colostomy/Folfox/colostomy reversal/bad PET
8/08: stage 4 w/mets to the liver

In September 2008 I met with a new Medical Oncologist at a major cancer clinic for a second opinion. He in a gastro. onc that specializes in mets to the liver. Every liver surgeon told me I was not a candidate for resection as I have 10+ tumors spread all across both lobes. Onc recommended Folfiri w/Erbitux to attempt to get the tumors under control and make my liver resectable. 5 rounds of chemo and the CT at Thanksgiving showed a stable disease meaning: no change at all. Good news/Bad news = no news.

Onc sent me to meet the top liver surgeon at the cancer clinic and I met with him the week before Christmas. He had spent hours reviewing my medical records (I know this because prior to the appt his office called and asked for very specific records from specific facilities and dates). He examined me and got a history, then stated that I am not really a candidate for surgery, rfa, or radiation. Maybe more chemo? I could feel my husband sitting beside me, tense...silent and I couldn't bear it. I wanted to protect him from all of this. It was all I could do not to cry. I looked the surgeon in the eye and calmly said, "I'm 44 yrs old and I'm not going to die from cancer. I'm here to get this fixed so what is your plan to do that?" Then I sat quietly and looked at him until he started to come up with solutions! (sitting quietly is NOT in my nature, btw!) He was coming up with 'alternative' types of surgery that weren't very encouraging. I looked at this renowned surgeon that has worked with my onc for 30 yrs and said that my onc promised me NED and I was here now for him to make good on his collegues promise! Everyone in the room laughed (including me) but that surgeon started to back track. He told me that there is a possibility to do the resection in 2 stages with time in between for the lobe to regenerate before we go in and hack at the other lobe but that most surgeons would make a case to not operate. He promised to study my films and calculate the possibility of that.

The next week (2 days before Christmas)I had an appt with the radio. onc. who also stated I'm not really a great candidate (based on my scans) for radiation or surgery. By the end of the appt and meeting me, he had some ideas. He thought a combo of surgery and stereo static radiation with possible RFA. He said he'd meet with the rest of my team and see what they could come up with.

Wednesday January 7th at 9pm my phone rang. It was the liver surgeon calling, personally, to tell me that all 3 of my onc (med., rad., and him - surgical) had met with the tumor board that day. The reccomendation is: 2 part liver resection (1-2 months apart waiting for regeneration), RFA during the first resection, Portal Veil Embolizism 3 days postop, 5FU chemo. Oh, and am I available on Tuesday for the surgery....6 days later! Ummmm....YA!

The very next day (yesterday) I met with my medical onc. He said that I was NOT a candidate for anything but chemo before they met me, but he knew I'd win them over. That it was my attitude, my unwillingness to quit/give up, my willingness to ask the tough questions and follow through with treatment even when it wasn't going the way I wanted...THAT is why I finally made it to surgery! I wrote this part down so I'd remember it exactly: "Patients don't understand that they have to present themselves well and 'sell' themselves to their doctors. Even the most talented doctor knows that the patient's attitude, positivity and willingness to do whatever it takes plays an important role in prognosis. Without that, we can't really help." He told me to pretend I'm happy and positive whenever I can, even if I don't feel like it (I already do that) because, as we here already know, 'fake it til you make it' really works! He TOLD me that he believes that I will have the cure I've been seeking. He also told me that one member of the tumor board (another liver surgeon) wanted to just leave me alone to chemo - "enough is enough" - and all of MY onc fought for me. They pushed because they believe in my cure.

So, on Tuesday January 13th I'll have my resection (well, I like to call it a liver tuck....doesn't that sound like more fun than a resection?) and RFA. Friday will be the Portal Vein Emboliziation and home Sunday or Monday. A month off and then chemo until the next resection, date TBA.

For those that made it this far down the page, God Bless You! LOL Please pray for me and a positive outcome. I now have HOPE in places where there was none. I was the only one that believed I'd get to a cure when this started and that was enough. Now I have a whole team believing right along with me! Fight on, stay strong, cry when you need to, smile whenever you can, laugh every. single. day.

Kimby