Let me begin by apologizing for the long overdue update.  I don’t have a good excuse… aside from work being quite busy, the new school year starting, our daughter’s 8th birthday, the usual upkeep of houses and of course this whole “cancer thing”… haha. 

I last left off just coming back from San Diego visiting with UCSD (Dr. Baumgartner) and the Sharp Medical Center (Dr. Barone).  We were feeling quite comfortable with the idea of pursuing the suggested surgery with UCSD and using the MRI procedure at Sharp for my followup screening.  OHSU had just called to get an appointment scheduled for the 20th of September (which happens to be the day I’m writing this) and we were still planning on heading to Houston to get a consult with MDAnderson.  
My how things change (or don’t change I suppose haha) in just a couple weeks… lol.

 The following week I did go in for a new set of chest, abdomen and pelvic CT Scans (at the request of Dr. Baumgartner).  This ended up being kind of pain because OHSU had also ordered another set of chest CT’s and the imaging center got all in a twist because I had two different referrals for the same scans.  So we had to get in touch with OHSU to have them pull back their request so that my file only showed one referral.  (Just a note for anyone who is in a similar situation: Getting multiple opinions can be a struggle because the system is really designed to have most requests coming from one medical team.  Ugh… Apparently “redundancy” is something necessary at NASA but disliked by insurance companies… lol)  Anyway… got the scans done… and my radiology report came back clean.  No metastases were able to be seen.  Which is definitely good news… but definitely doesn’t mean I’m out of the woods.  This just means there aren’t any tumors big enough to be seen on my scans.  But… I’ll take any positive information  I can get… so… Woo hoo!!! 

On to MDAnderson.  I did receive a phone call around the Wednesday after we returned from San Diego.  They said they would like to schedule 3-5 days with me down there so they could conduct all their own testing (which was frustrating because I had done all of the tests they were planning on doing.  Blood, CT’s, physical exams etc).  They said the soonest they could get me on the schedule would be mid to late October.  (I believe October 14th was the soonest he had… then later in October).  With a deep sigh… I let him know that I would get back to him.  Monica and I talked about it that night… and she reached back out to them a couple days later.  She asked if there was any way we could just get a one day appointment to discuss what their path would be, using the tests we’d already had done.  The scheduling person said they liked to use their own testing to ensure it’s all done right.  Needless to say we thanked them for the trouble of contacting us… but we’d likely be going forward another direction.  I must say… this is all so very frustrating.  I mean… I’m not looking to throw any of these guys under a bus… I just want their opinion.  A couple hours of their time to give us some insight on what their thoughts are.  I’m happy to sign any waivers or even a check for the time spent talking with me.  I just wish it was an easier process to get that done.  Oh well… onward.

On to OHSU.  We ended up knowing someone who worked with OHSU so we were able to get my appointment moved up to Monday (September 17th).  Which was great… we knew we were going to be getting close to scheduling the surgery with UCSD so we wanted to talk with OHSU before we did that. Monica and I met with Dr. Tsikitis at noon on Monday.  Parking down at the South Waterfront area is a nightmare btw… yikes.  I almost wish I could have just driven up the hill and parked at the main hospital… lol.  She was great… and I honestly felt very comfortable with her.  She mentioned she worked closely with another surgeon on situations like mine… or anything that may require HIPEC.  (Dr. Gilbert wasn’t available to meet this week or next… so we went ahead and met just with Dr. Tsikitis).  OHSU has been doing HIPEC procedures for almost 3 years now… and they did have their training for the procedure down in San Diego.  She mentioned that they would not offer the possibility of HIPEC in the situation where no disease is found in my peritoneal cavity.  So that option would not be available at all.  She also mentioned that at the conference in Paris last week, there was a study released that showed “preventative HIPEC” (or HIPEC done without any signs of disease) does not necessarily improve survivability and really only increases the chance for complications.   We’ll be looking in to this study for sure.  Anyway… Dr. Tsikitis said her plan would be to go in for the right hemicollectomy (remove my right third colon to test the lymph nodes for cancer.) and probably remove a sizable portion of the omentum (to biopsy and as a preventative measure to remove areas the cancer likes to grow).  If they see any signs of disease… they would go forward with the HIPEC procedure.  If no disease is found they would close me up and we would proceed with monitoring.  If the lymph nodes come back positive… we proceed with systemic chemotherapy… but she also mentioned that there might be a possibility that systemic chemotherapy could be prescribed even if they don’t find any disease in my lymph nodes.  But that would be decided after surgery.  (this was new to us as well… and we’ll be asking more questions about this option).  Anyway… the path she suggested was very similar to that of Dr. Baumgartner… other than… not offering the option to go forward with HIPEC if there is no sign of disease.  

In the end… Monica and I both felt she was great.  She seemed very nice and knowledgeable.  But we both agreed there was a feeling of being “very busy”.  I don’t know how to describe it… but it just felt like she has a lot on her plate, and as much as we liked her… I just didn’t get the unadulterated feeling of confidence in the facility that we had with UCSD.  That, combined with the fact that they’ve only been conducting HIPEC procedures for “almost 3 years” really had us feeling that UCSD was the place for us.  I want to make clear that it wasn’t her specifically… and I’m sure my care there would be great… there was just something unspoken and hard to describe in the overall comfort level we felt with UCSD compared to OHSU.  I guess that’s exactly the reason we wanted to meet with multiple doctors and facilities before making our final decision.  But I think  we both agree that we are on board with the right people… for us. 

So… in closing this waaay too long update.  We are still on track to schedule the surgery with Dr. Baumgartner at UCSD.  I had updated scans that showed no signs of disease.  UCSD has all the information they need now to get me scheduled for the surgery and we will most likely hear something later today or tomorrow.  Oh… and my daughter turned 8!!  Other than that… all is well… I’m still feeling great… and I still find it absolutely crazy that I’ve been diagnosed with a super limited edition rare cancer that’s growing inside me and wants to take me out… lol.  Don’t hesitate to let me know if anyone has any questions that I haven’t answered.  I’m always happy to fill you in on anything I know.