Busy, busy!

Well, we have been busy, busy!  So many phone calls, tests & appointments.  I have to give credit to my sweet husband.  I would be lost without him.  He quickly not only became my emotional support system, but my medical advocate as well.  He took charge of contacting insurance for approvals & researching for 2nd opinions as well as keeping our household running.  He is amazing!

Since I didn't update here while things were happening, I'll give a brief rundown on what happened & where we are today:

April 12th-PET/CT scan
Great news!  The scans show that the cancer has not spread!

April 14th-EUS (endoscopic ultrasound) with Dr. Lee at UCI
He says that the tumor is small, but it is touching the external & internal sphincters & appears to be in one local lymph node.  He stages me a T3, N1, M0.

April 15th-Meet with Dr. Fong in Mission Viejo to discuss chemotherapy.  I will have a port put in my chest so that they can give me chemo through an IV that will be connected to a fanny pack that I will wear 24/7 for 5-1/2 weeks.  He says that side effects of the chemo should be fairly mild.  He is also the first person throughout this process so far who is very positive & encouraging.  I love him already!  He tells me that I will beat this & have a future with my family.  I so needed to hear this!

April 18th- (morning) Meet with Dr. Evans again & she goes over the results of the EUS & the PET/CT scan.  We also discuss the surgery to put the port in.  And we talk about 2nd opinions again.  It looks like we will be trying to get approval for a 2nd opinion at the Mayo Clinic in Scottsdale, AZ first, or then possible at Sloan-Kettering in NY.  Chad starts the fight with our medical group & insurance over this.  He is relentless & never gives up.  Again-I don't know what I would do without him.
(afternoon) Meet with Dr. Young to discuss radiation.  She's very nice & we like her a lot.  She takes a long time going over everything with us.  I'm not going to lie, I leave that appointment pretty sad & depressed.  I'll spare you the gory details, but just know that the side effects & the possible long term effects of radiation sound horrific.

April 20th-Back to Dr. Young's office to do the initial scans & tattoos (yes, tattoos, not a butterfly or anything fancy, just 3 tiny dots) so they can make a plan for radiation.  I am tentatively set to start treatment on May 2nd.

April 21st-I go in for genetic counseling.  Since I am so young (as I am repeatedly reminded of every time someone finds out I have cancer) they want to do genetic testing on me.  Although we don't have a history of colorectal cancer in my family, they still want to test for it.  I guess sometimes it can randomly appear.  And we have to know for the sake of our children.  The good news is, that if they get colonoscopies at a younger age, anything that may come up will be caught very early & never amount to anything major.

April 28th-(morning) I have the surgery to put the porta catheter in my chest.  This will be good because now they can give medicines or draw blood through the port instead of poking my arm every time.  It's an outpatient surgery, but as we have quickly discovered, I don't handle anesthesia very well.  Even when they give me anti-nausea meds before surgery.  Good times!  Anyway, the pain from the port isn't horrible, I'm just wiped out.
(afternoon) We go to UCI to meet with Dr. Pigazzi for a 2nd opinion.  Now, remember I am supposed to start chemo/radiation in 4 days.  We didn't really think much would come from this meeting with Dr. Pigazzi.  We were planning on attempting treatment in another state if necessary.  But Dr. Pigazzi informs us that I would be a good candidate for a clinical trial that they are conducting for rectal cancer treatment.  And the trial is actually sponsored by Sloan-Kettering & being held at a few hospitals around the nation.  Well, that snaps me out of my post-surgery fog pretty quickly!  He offers us this glimmer of hope that we had been praying for!  There is a lot of information to cover & we're not sure if our insurance will approve it, but we tell him "sign us up!"

So basically how this clinical trial works is that you are given 5-1/2 weeks of chemo/radiation followed by 12 weeks of chemo only.  The trial randomly chooses which treatment you are given first, but you still will receive both.  Then they reassess you to see how your tumor reacted.  If there is no trace of the tumor then they will not perform surgery.  You are then closely monitored every 3 months for the next 3-5 years.  They have been very successful in treating rectal cancer this way so we are optimistic.

And I have to say, we are immediately impressed with UCI.  With the facility & the people who work there.  Everyone is very nice & helpful.  Everything is modern & clean.  Dr. Pigazzi definitely seems more knowledgeable in current practices.  He spends a long time with us, giving us a lot of information & answering all of our questions.  He says if it were him, he would do this trial.  We feel very comfortable being treated at UCI & grateful that we did go there for a 2nd opinion.  The next day we call Dr. Evans, Dr. Fong & Dr. Young & tell them that we are going to put a hold on starting treatment because of the clinical trial.  All of them are very understanding of our decision & tell us we are doing the right thing.  Now we just need to work with our insurance...