Cody Updates by Mom

Well, I have not only made it through the busy weekend, I have also made it through not one but two days at Mayo.  Both Jim and I are exhausted mentally and physically.  Let’s start with the fun stuff.  Cody’s robotics team was on the first place alliance for the tournament on Saturday and he had a great time.  All other stuff over the weekend went as planned.  So, now on to Monday.

Monday started with a snowy drive to Rochester but we made it in time for my appointment at 8:30.  After the process of getting checked in and my information put into their system I met with the Nurse Practitioner, Sheila.  She was great and I really liked her a lot.  She spent a significant amount of time talking to us to understand where we are at right now with the situation.  In the end we landed on the fact that they will likely be recommending the surgery as well but timing is up to me.  If I want to wait for any length of time I will need to have a scope and biopsy done every six months.  The only trouble with this is that she also agreed that this type of cancer is very hard to detect and if they detect it on a test it is quite often too late to cure.  She said that there just isn’t a lot of good treatment options for people in the advanced stages of this cancer.

Good news was that I did not have another scope and biopsy on Monday.  Mayo was able to get all of my records from Regions and they felt that it wasn’t necessary to repeat the test.  That’s about where the good news stopped on that topic.  Sheila explained that since this genetic mutation also increases my risk for colon cancer that it was necessary for me to have a colonoscopy and that they had already scheduled me to have it on Tuesday since I had already been fasting for Monday’s scope.  Great.  We also talked about the surgeons available and where their skillsets were in relation to stomach cancer.  Sheila helped us pick a surgeon that she had very high confidence in.  We asked about the hysterectomy and they are fine with doing both surgeries at the same time.

Sheila then went to talk with the doctor that she works with, Dr. Boardman, who is handling my case.  We talked with Dr. Boardman briefly which she also confirmed all that Sheila had covered.  Sheila had spent so much time with us that this visit really didn’t need to be very long.  We had most of our answers.  Sheila commented that I was the most informed person that she had seen come in with this issue.  She was happy that I had done so much research and understood what lies ahead of me.  Those conversations are much harder to have with a patient when they are first learning what the future holds.  They left and let us know that someone would be in with my schedule of appointments and information about my colonoscopy in the morning.

I have also agreed to be in Dr. Boardman’s research study for stomach cancer.  She has been getting people to give blood and tissue to help them research the cancer and find better ways to prevent or cure it.  I am happy to help with her research.

I found it nice that we just hung out in the room and for the most part the different people came to us.  The scheduling person came in and gave us a very large packet of appointments and information.  I was scheduled yet on Monday for an Electrocardiogram and had to start my prep for the test on Tuesday.  We found our way to the pharmacy and got my trifecta of meds for my prep.  I had to start the prep right away and was very much praying that I would make it through my test and the 1.5 hours home before anything started really working.  Luckily I did.  The ECG was fairly quick and we were on the way home.

By the time we got home the first set of meds was working pretty well.  I spent Monday night “cleansing” for the test.  The nurse that I talked to understood our drive time and was able to help me with timing of the final meds so I would be able to make the drive down without having to stop.  This worked well and we had no issues. 🙂  Only a few jokes from the kid on asking if everything was coming out ok.  I can’t even get after him about it because I know where he gets that sense of humor from.  If I never have orange Gatorade again it will be too soon!

Today went fairly well.  The team that performed my test were great.  My nurse, Paul, was very chatty and joked about stealing secrets about DQ while I was out.  They promised me that I would be out enough that I would not remember the test.  Yay!  The anesthesiologist came in and talked to me about the sedation.  He also commented about how the mutation diagnosis was sad and wanted to know how we were doing.  Both with Regions and Mayo I am continually impressed by people that work in fields like this and oncology and how they really care about their patients.  I believe that the doctor that did the surgery was from England or just really good at faking the accent.  After meeting about six different people I finally was ready to go the procedure.  In the procedure room I met another group of people and then took a nap.  Before falling asleep I noticed the scope on the table.  Identical scope to the one from the stomach procedure.  They didn’t say but I wonder if my heart beat went up a bit.  Good thing was that I was asleep very quickly and awoken when I was over.  Back in the room my nurse made me some toast and got me apple juice.  Both tasted wonderful as I was famished.

They found one polyp that they removed and also did a few biopsies.  We will have the results no later than Friday but as early as tomorrow.  Everything else went fine and I was sent home shortly after the procedure.

So, where are we at now?  I am going to have the surgery.  I know that there is a slight chance that I won’t get stomach cancer but the fact that there is an 80% chance that I will, I don’t want to risk it.  I also do not want to wait too long.  I did not fight for the last months to get my chance of recurrence down to single digits to be chancing a possibility of stomach cancer looming so big over my head.  I don’t want to sit and wait between the scopes wondering if this one will show a cancer that they cannot cure.  This surgery may be life changing but it is still life.  My life means more to me than to worry about what I may need to change going forward.  I am determined to see my children’s lives unfold and be there for those important moments.  My father missed me graduating from college, marriage, the birth of my son and finally working at the company of his favorite place to go.  I am not going to do the same.

Next steps:  On Monday, 12/1, we meet with my surgeon to discuss the surgery and also timing.  Sheila says that she really likes him because he takes the time to understand our needs and really talks to us prior to any surgery scheduling.  It will be good to have his insight on this as well.  Then on the 9th we are scheduled to go back to meet with a genetics counselor.  Donna the scheduling person gave us a suggestion of how we may be able to get in on the 1st so we can combine our appointments.  Then we need to figure out timing.  There are a lot of things to think about as it relates to my other surgeries for my reconstruction.  I also have to discuss with the surgeon on whether the radiation treatment I received will impact the timing of this surgery.  Once I have that info then it is simply just discussing with Jim and Cody about what makes sense from a family standpoint and then figure out the work schedule.  Good news is that they do a lot of the surgery by laparoscopy so the recovery time is less.  I will spend about five days in the hospital and about six weeks at home.  The biggest recovery is the eating which Sheila said could take a few months to get it all figured out.

I am happy to be eating again and done with the procedure today.   I am mentally, physically and emotionally exhausted.  I have had so little sleep and so much going on that I am pretty numb at this point.  I am looking forward to a little break for a few days and then back at it again next Monday.

I wish you all a VERY Happy Thanksgiving.  I know that I am very thankful for the fact that God has given me the ability to fight and somehow when I am feeling too tired to fight I still find the strength to keep moving.  I am so very thankful for Jim that has been at my side for all of my appointments as he is dealing with his own emotions as we traverse our new future.  I am thankful for Cody and his passion for robotics and his care of me.  He watched a movie with me last night while I was cleansing. 🙂  I am also thankful that both Alex and Phil are there for me even though they are far away.  It was nice to have Alex home for Thanksgiving on Sunday and looking forward to everyone home for Christmas. I am also extremely thankful for my support team that has helped me with your thoughts, words and prayers!  May your Thanksgiving be filled with things that warm your hearts and put a smile on your face.

Caring Bridge Comments

Janette McCalvy|Nov 27, 2014 8:48pm
You truly are an amazing woman. So wise, strong and determined. Thanks for sharing your journey with us. Know that we hold you in our thoughts and prayers everyday. May you and family have a wonderful Thanksgiving.