Cody Updates by Mom

Well, today was a very busy day at Mayo.  We first met with the GI surgeon that the Dr. from last night had found for us, Dr. Smoot.  He was very knowledgeable about the surgery and explained the recovery in detail.  He has performed this procedure in the past and it was clear that he is very capable.  He confirmed that it is reasonable for me to have the surgery due to the CDH1 genetic mutation.  He also confirmed the timeframes.  I would be in the hospital for about a week and then home from work for 4-6 weeks.  We also asked about being able to do the hysterectomy at the same time.  He said this is an option but would require scheduling a GYN surgeon along with his schedule.  We then talked about the option of laparoscopy for the surgery.  He said that likely the hysterectomy could be done by laparoscopy however he was not able to perform the total gastrectomy that way.  He did mention that the chair of the department is world renowned for his laparoscopic surgeries and might be an option.  If he is not available I will stay with Dr. Smoot for the surgery.  Doing both surgeries will extend the time I have in the hospital and also my recovery time at home.

We then spent a significant time with Sheila my Nurse Practitioner and what I am starting to consider as the team lead of my care team.  She went through the OR schedules of the new surgeon that I am going to try to see and also some GYN surgeons and found one that is experienced and has a couple of the same OR dates open as the GI surgeon in January.  We now are set up with appointments to see both of the new surgeons.  Unfortunately the GI surgeons schedule is very busy so I will not be able to see him until the second week in January.  Sheila said she will email him our desired surgery dates and see if he will leave a spot open for me.  I will see the GYN surgeon two weeks from today.  That same week we see the genetic specialist but unfortunately could not sync them on the days.

We also talked to Sheila about the whole genetics thing.  The surgeon we saw here in St. Paul made an off-hand comment regarding the genetic findings.  He said the surgery was reasonable as long as the test was accurate.  So, today we asked Sheila if the test could be wrong.  You never know??  She then spent a good 20 minutes figuring out how we could potentially have just the CDH1 tested again as a verification of the mutation.  She said their testing is 99.9% accurate as long as there was no mix up on whose blood they were testing.  At the end of all of it she had us set up to send in a new blood test, the genetic counselor (that I had not met yet) was contacting the genetic testing company to determine if they would cover the cost of the test.  Worst case scenario we will pay $400 for the test but knowing that we are making this very big decision is worth every penny.  We will know the results before the surgery and will continue on our path of surgery as if we are going forward with it.  She did laugh and say that we are the first that has asked this question.

Looks like I have to get all my favorite foods in over the next 5-6 weeks!

We then got the results of the colonoscopy.  She told me I had very boring normal pre-cancerous cells in the polyps they removed.  They are considered pre-cancerous because they could turn to cancer but on the scale of the pre-cancer types it is all the way at the bottom.  At this point they are putting me on a 3 year schedule for testing.  Yay!  Boring is good.  Boring is actually fairly unusual for me lately so I am going to enjoy that for a bit. 🙂

They took a significant amount of blood today but didn’t really need it anyway, right?  I also see both my oncologist and plastic surgeon this month for follow up visits.  It will be a busy December.  Deck the halls with surgeons and doctors! Fa la la la la, la la la, laproscopy………  Hey, could be a new version.

Caring Bridge Comments

Martha Rothenberger|Dec 2, 2014 10:28am
Melanie: My words most certainly will fall short of what I am feeling and would like to convey to you and your family. I can only imagine the myriad feelings you are having, all at the same time. I give you my love, hope and prayers. The doctors and medical professionals you are working with are considered to be some of the very best in the world. As you seek to weed through all of the information and options I pray that God will give you His wisdom to make the wisest choices. More than that, you have a whole community of family and friends who will continue to go through this journey with you. You are not alone, and though it’s sometimes hard to feel, God is right next to you. Peace to you and your family.