FIRST MRI

I had my FIRST MRI today and it went great!!! Didn't realize how hard it would be to lay completely still for 25 darn minutes! Of course my nose would run and I just had to let it do its thing, got a frog in my throat that I couldn't clear, and a hair was tickling my cheek that was driving me up a wall!! Glad to be done with it and the tech said I did really good and she some of the best breast pictures she's gotten in a long time. Two gold stars for this girl today!!!  Now, I have to wait about a week to get results...hopefully nothing crazy! :)

POSITIVE THINKING, FASTER RECOVERY

I definitely wouldn't say I'm looking forward to surgery....at all, BUT...I do feel pretty darn good about it AND hopeful!  This article talks a little bit about how having a positive attitude going into surgery will allow for a faster recovery!!

http://abcnews.go.com/Health/story?id=117317&page=1

 



SNICKERS

I had a dream the other night that I had my surgery and I could even seen all 6 incisions. They had me do my swallow test with a Snicker bar....ya, I'm sure that will happen...especially with nuts, but it sure was funny!!!

SAVE THE TATAS

Along with this CDH1 mutation comes the risk of about a 52% chance of lobular breast cancer.  Since there are many more ways of screening for this vs. the gastric cancer and the chances aren't as great as the gastric cancer, I am not going ahead with a double mastectomy....at least not, yet.  That may be something that I consider as life goes on, but having a complete gastrectomy is enough for my brain to think about day in and day out right now.

To stay on top of this, I am supposed to have a mammogram and MRI yearly.  Do a mammo then 6 months later do the MRI then 6 months later the mammo and so on and so forth.  I am set to have my first MRI next Monday, March 28th in the morning.  Hopefully all goes well! :)

(SIDE NOTE- this reminds me of our shuttle driver this last time we were down in Mayo.  We were behind a car with a bumper sticker that said, "Save the tatas" with the pink cancer ribbon in between ta and ta.  He said OUT LOUD, "Save the TAG-TA's?  What's a TAG-TA?"  BAHHAHHAA...he must have thought the ribbon looked like a G!!!)

I KNOW REMOVING YOUR STOMACH SEEMS EXCESSIVE, BUT IN MY EYES NOT REMOVING IT SEEMS EXCESSIVE

Don’t get me wrong….I know that ANYTHING can take me at ANY time, but if I can help to prevent it, I sure will! I am not God and I don’t have the end all say. Watching my mom go through hereditary diffuse gastric cancer was AWFUL. I don’t wish it on anyone and because I have the option to LIVE even without a stomach so Paige and Sean won’t watch me go through it, that’s just what I’ll do.

My mom HATED taking pictures, but here are a few.  If you knew my mom, you might remember her looking this way. She was BEAUTIFUL inside and out!! 

This is a picture the summer before she past. I believe she was still doing cancer treatment at this point and had already had 80% of her stomach removed. 

The next is after being treated with chemo and radiation. She was much thinner and lost all her hair, so she had a wig on here. 

The last photo was taken at Thanksgiving. She past December 19, 2004. This picture hurts SO much!!! She looks SO sick and it breaks my heart. I NEVER want Paige to EVER have to see me that way! (THANK YOU to Ruth for sending me a whole photo album FILLED with pictures and memories!!!)

I know removing your stomach seems a bit excessive, but in my eyes….when it’s GENETIC and there’s nothing I can do to prevent it (I've had several people say, "just keep yourself healthy"...I wish it was that easy) and with an 83% chance of getting it and only 4% chance of survival IF I get it, then NOT removing my stomach when I KNOW I can live without it seems excessive. I know this isn’t for everyone…not even knowing about the genetic mutation is for everyone, but I’m here to live for Sean and Paige & to me it seems crazy to not even CONSIDER knowing about the mutation or removing your stomach when you have those chances against you. I miss my mom SO much and it’s been hard not having her here for SO many special moments (college graduation, getting married, having Paige, etc.) and I NEVER want Paige to have those sad feelings during such great moments in her life!!! I will fight to be here FOREVER if I can!!

ENDOSCOPY PICS

In case you are wondering what the upper gestational tract looks like on an endoscopy, here's what my scope looked like.  ;)

(I didn't know the stomach had ridges and looks similar to a desert lol)

NO NEWS IS GOOD NEWS....IF I CALL, THEN SOMETHING'S UP

"No news is good news. If I call you, then something's up. However, looking at your scopes, I don't suspect anything as the pictures of your stomach look perfect!" Those were the words out of my doctors mouth...(and btw, when I say doctor I ACTUALLY am talking about my Nurse Practitioner, Sheila.  She is the one I have seen the most and she is SOOO thorough and amazing. Sheila literally spent about an hour and half with us this last time we were in going over things and answering questions before we met with the surgeon!).

Well, I got a call while I was work yesterday from a 507 area code.  Ugh.  I knew it was from Mayo.  Sheila left a message stating NO cancer (YAY!), but on the majority of the 8 biopsies taken, H-pylori was detected just like the last time I had my endoscopy.  As a reminder, H-pylori is an infection in the stomach and it puts me at a higher risk of stomach cancer if not treated.  They are not entirely sure why or where people get it from and most don’t even know they have it without being tested.  (SIDE NOTE….my doc told me that the majority of Alaskans have H-pylori and they actually have their own regimen up there to fight it.  Why there and WHAT is it??? Weird….) I’ve had some TERRIBLE heartburn over the last few months and feel like I EAT tums daily and nightly, so I kinda figured SOMETHING was going on and that’s a definite sign of it.  Last go around, I was treated with a two week course of two different antibiotics and an acid reducer.  I called Sheila back and she said that once you get rid of the H-pylori, you don’t get it back.  She figures the first round of meds didn’t work and that’s not common.  She said she’s not SUPER worried about it since I’m having my stomach removed in August, but because this type of stomach cancer is so aggressive and doesn’t just form over a year or so and when it starts to develop, it takes off like crazy, she said she surely wants to treat it, again.  Sheila said she doesn’t want THIS to be what triggers my crazy CDH-1 mutation and sets it off.  Now, because the 3 meds she put me on last time didn’t work, she’d have to find something stronger.  Oh ya…and by the way, I’m allergic to levaquin, so that throws a loop in things and makes it difficult.  She said she would look into what will work that doesn’t involve levaquin and call me back.  Two hours later I got a call back and she said she did a lot of research and found two antibiotics that will work, an acid reducer, and an anti-nausea med since one of the two antibiotics will be pretty rough on my stomach.  I will do all, but one of these 4x a day for the next two weeks.  She has no doubt that this should kick the infection.  If I’m still having extreme heartburn after, then she’ll test me for the H-pylori, again.  If not, then we know it worked this time.  *fingers crossed*

SO…I head to the pharmacy to pick them up and ONE of the four is $160 out of pocket WITH insurance.  WITHOUT…it’s over $800.  HOLY BUCKETS!!!!  The super nice pharmacist suggested I call my doctor and find out if there would be something else she’d suggest.  So, I called and talked to Sheila’s assistant today as Sheila is out of the office on Fridays.  She called Sheila who called the pharmacy and guess what?  There IS another script she could do that would work with my crazy levaquin allergy…..BUT….it’s MORE expensive.  ARGH!  Well, it is what it is and if this is going to kick this infection, then whatever.  The pharmacist had to order in this med that’s crazy expensive, so I’ll be in later this afternoon to pick them all up and get started.

On the BRIGHT SIDE…..NO CANCER!!!! 

MAYO VISIT

Well, besides the day feeling extremely long on Monday, it was a pretty good day!!

 I started out the day with my endoscopy which went AMAZING as I wasn't awake and didn't feel anything compared to last time. Haha. I let them know I remembered everything about the procedure from last time so they gave me extra meds in my IV and that definitely did the trick. :)

Met with my GI doctor and that went well. She said the scope looked perfect, but of course they did the mapping in my stomach so once the biopsies come back, she will know more. We went over a few different things and it was reiterated that THIS IS GENETIC and as much as she wishes eating healthy, working out, or taking a specific supplement would help clear me of the 83% chance, it just won't. She even thought that because my grandpa passed from stomach cancer and my mom that my chances might even be higher than 83%. Eeek!

One thing that hit close to home and I read about MULTIPLE times on others blogs was that she just had one of her patients last year do the endoscopy and it came back clear, but she knew she had an 83% chance of stomach cancer, so she still went ahead a few months later and had her stomach removed. They found cancer cells...thank goodness they took her stomach when they did as this cancer doesn't grow over a few years....it's a few months as this type of cancer is very aggressive. Crazy!!  That's exactly how it went for my mom....scope came back clear, but 6 months later...there it was and had engulfed 80% of her stomach.

I met with my surgeon, Dr. Kendrick, and he was AWESOME!!!! He was super kind and didn't push me out of his office...he went over EVERYTHING and stayed until all my questions were answered. Haha. Plan is to do surgery in August still...will have a for sure date in May/June. He's hoping it will be laparoscopic and that I'll be in the hospital for only 2-3 days. If problems arise during surgery and it becomes an open surgery, then I'll be in the hospital for about a week. With laparoscopic, they make about 5 different incisions (4 about 1in incisions where the tools go in and do their magic and 1 a bit bigger below the belly button to get this crazy stomach out). After surgery, I'll stay down in Rochester for a few more days just in a motel to make sure everything is good before heading back to Bismarck. Some things to look for and be aware of is strictures which is where the esophagus and intestine are attached as it might try to close on me due to scar tissue. If so, they go in with a scope and inflate a balloon type deal to open it back up. Some people never have this and some do a couple times and it's very rare if you have to go back in more than the 2x. Other thing is "dumping syndrome" and that is exactly as it sounds lol. Food travels too fast through your system to cause....well....dumping. Other things to "deal with" are getting the vitamins and supplements needed. B-12 shots monthly along with calcium and daily vitamins are a must. "Dealing with" that is NOTHING compared to what I'd have to "deal with" if I waited on this cancer to make up it's own mind. Dr. Kendrick said I will not have to go back for any other follow up visits as long as all is going well for me and I'll have NO WORRY about EVER getting stomach cancer!!!! :) He, also, said he expects my life to be "normal" about 1 year post surgery as that seems to be the rough time frame when his patients have figured out what works and doesn't work for them.

So, that's what I know.....lots of great info and most I already knew from reading into this so much, but glad it's all consistent.

Now, up next is the MRI of my breasts and that should be in the next few weeks. As long as all is good there, surgery will go as planned in August.

So, there's my extremely long update....glad the day and drive back home are done.

MONDAY APPT!!!!

Well, we leave on Sunday to head down to Rochester for all three of my appts on Monday. Hoping to make it a quick trip!!! I have my endoscopy Monday morning, then meet with my GI doctor Monday afternoon, then surgeon right after.

 I don't really have any concerns, so hoping it goes well. Also, I am looking forward to meeting the surgeon and see what all he has to say!!