Cody Updates by Mom

Last week we met with Dr. Wolpert who is a GI surgeon.  This was just an appointment to meet him and talk about my situation and what my options are.  We went over the new information from my history and he said that this new information greatly changes his opinion on my case.  He is strongly recommending that I have the surgery, no matter what my results are from the biopsy.  His reasoning is that we have been able to find three people in one lineage with stomach cancer.  He also said that if it is not that lineage and it is my fathers that it could potentially be that his prostate cancer just got him before the stomach cancer could.  There is no way to know the past in these situations.  HIs concern is that if we wait that we will potentially not be able to catch the cancer before it is a terminal situation.  Stomach cancer is a very bad way to go.  He made the comment to us that I will learn to live without a stomach, with an emphasis on LIVE.  He, however, is not in favor of the pouch surgery and would be simply attaching the esophagus directly to my small intestine.  We have let him know that we will get back with him with our decision after we have had the biopsy and have had time to research and think.  He recommended that we talk with my genetic counselor again and go over the new family history with her.

This week I was able to talk with Kathy my genetic counselor about the new information.  She is in agreement with Dr. Wolpert and is deferring to him for the recommendation on my surgery.  I also discussed with her the process to get a second opinion.  I will explain later what we are doing in this arena.

Today was endoscopic ultrasound and biopsy day.   I met the GI specialist Dr. Li today and she is the doctor that did my procedure.  This procedure was not a very pleasant experience.  Especially since this conversation happened right after.

Doctor: “Were you awake?”

Me: “Yes”

Doctor: “Oh, sorry, it didn’t seem like they were giving you enough medicine.”

Ugh.  Basically, they use a camera that looked about the size of a chap stick container in diameter for the test.  It felt more like a garden hose and quite honestly my throat agrees with that.  Unfortunately, I was very awake through most of the beginning of the procedure.  I remember very vividly the doctor putting the fire hose down and having two episodes of my body trying to throw up said fire hose.  I also remember the doctor saying that they needed to give me more medicine.  At least most of the end of the procedure (the biopsy) was during the time that I was more out of it.  The procedure lasted about 45 minutes and then I was in the recovery room with Jim.  They continued to check my vitals until about 10:30.  This is when they expected me to be awake and ready to get out of there which I was.  My throat is very sore but I haven’t had any issues with eating and drinking other than some basic discomfort.

So, we have one answer.  And, its at least a positive one.  Dr. Li did not find any visible signs of cancer anywhere in my esophagus or stomach.  This is very good as if there are visible signs of cancer it is typically too late as the cancer has likely already spread.  Very big sigh of relief.  Since there were no visible signs she took random biopsies throughout the stomach to send in for testing.  They will be looking for cancer but also signs of any of the cells starting to turn to cancer.  She said we will get these results the beginning of next week.   She said that if there is bad news then she will call with the results, if not they will send them to my inbox on my HealthPartners site.  So, more waiting.  I am having more and more trouble being able to calm my nerves during the waiting.  My patience is running thin.  Kind of like an onion skin.

So the question of the month is what do I do?  Do I have the surgery?  BIG life change.  Do I wait?  Not much of a gambler and do not really like the odds I am facing.  Thanks to some help from work I have been able to get started on a second opinion.  I have learned the Mayo is actually in my insurance group.  During my procedure today Jim went down and talked with my oncology nurse and requested that we get a referral from my oncologist to a GI surgeon at Mayo.  We are hoping that we will be able to get down there in the near future.  If they have a significant waiting time then we will try the U of M.  No matter what, I intend to talk with another surgeon and get their viewpoint on if I should have surgery and if they agree then what surgery do I have.  It isn’t that I am not confident in my doctor team however this is more of a rare situation and even they have said that they do not work with many of these cases.  I do not want to make this decision without having a significant more information.

So, again, more waiting for things to happen.  Maybe at the end of all of this my patience will be more like pumpkin skin.  I am sure it is not necessarily skin but I think you get my meaning.  Oh well.  Onward and upward.  Thank you again for all the prayers and kind words.  They mean so very much throughout this process.

Caring Bridge Comments

Joan Axdal, Prayer Chain, All Saints Lutheran Church, Cottage Grove|Nov 16, 2014 11:41pm
Mel, I just heard today of this next Chapter. I am sorry that you are facing this and I celebrate that more information is becoming available to you. You continue to be in our prayers.