Sunday, December 20, 2015

11 YEARS ***RIP MOM***

I REALLY wanted to post yesterday, but never got a chance to as it was an insanely busy day!
Yesterday was 11 years since my mom passed away from hereditary diffuse gastric cancer. There is not a day I don't think about her even if it's just once. There are still times when I want to call her up to tell her something exciting/sad/frustrating/funny, but I know I can't. I know she is watching over me, but that's not good enough. I miss her and I'd do just about anything to have her back! I think it's ok to be mad from time to time and right now I feel like it's just not fair!
I don't remember feeling a lot of anger after my mom passed...more sadness and questions than anything besides trying to figure out how at 19 years old I was going to conquer this world on my own. The one time I do remember feeling frustrated/mad was when I had to go to the store to return the Christmas items I had gotten for my mom (she asked for clothing as she had lost SO much weight with the cancer that not much fit), but she never got a chance to wear them...not even a chance to open and see them. The lady, bless her soul as it wasn't her fault, asked if there was anything wrong with the items. I SO badly wanted to say, "YA, THERE'S SOMETHING WRONG WITH THEM....MY MOM CAN'T WEAR THEM BECAUSE SHE'S NOT HERE ANYMORE!" I politely told her nothing was wrong, but just wanted to scream out in anger.
Life isn't fair...that's life. AND...when people say (myself included), "everything happens for a reason," I can't help but to think that maybe there's no reason at's just the cycle of life. You live and you die. I miss my mom more than anything in the world and I don't know that it will ever get easier. I don't know that I will ever stop thinking why her? Truth is though, this is my new life. Even after 11 years, I have to accept that it is what it is (Sean's favorite quote).
What I do know is that I am blessed with 19 years of WONDERFUL memories with my mom. She was an amazing woman and if I could be half the woman/mom she was, I'd be one heck of a woman!
**RIP Mom. Love you FOREVER**

Sunday, December 13, 2015


Courtesy of my Aunt Kathy (KC Davis) who is an admin on my facebook blog.

Monday, December 7, 2015


I read this posted on the No Stomach for Cancer facebook page and found it to be SO true from other blogs I have read, so felt it appropriate to post here, also!

The Challenges of Having a Total Gastrectomy-What People Do Not See ~Beth Lambert

In the five years that I have been on the Board of Directors of No Stomach For Cancer, I have talked to others who carry the CDH1 mutation about countless issues…. genetic testing, upcoming surgery, nutrition, life without a stomach… One of the biggest challenges, though, is not just the physical aspect of the diagnosis but the psychological/psycho-social issues as well.
First and foremost, most people feel lucky to have the information and choices, often choices that another family member did not have. Sadly, it is only after one or more deaths occur in a family that the CDH1 mutation is discovered in the family.
Many people have total gastrectomies- complete removal of the stomach- and, thankfully, do not require any kind of treatment. They have to make the huge adjustment to life without a stomach, but, overall, they do not require lots of medicines; in fact, they might not require any, except some initial pain medicine shortly after the surgery. You look at some patients and would never guess they do not have a stomach. They look “normal,” healthy even. And while they might look healthy, even “great,” they might be far from that. As everyone knows, , looks are deceiving.
You see, what many people do not understand about those who have had their stomachs removed ~and those fighting other illnesses, too~ is that each day might be a struggle. Some days, it takes all one’s energy to consume enough calories to get through the day. It is not simply about putting food into your body or “just eating a little more;” it requires tremendous strategizing and effort,. It is the same way people often feel when they are trying to lose weight- it takes a great deal of time and effort. You can no longer just put something in your mouth and wait for the calories to add up. You have to pace yourself. Eating a food that you could previously inhale might make you sick now. Or, eating that food could make you sick one day but be totally fine the next day. If you have too many incidents during which you feel sick, you could find it easier not to eat. Meanwhile, your weight may be dropping and you may even be getting too thin. Because our society values thin, people tell you you “look great,” even though you look in the mirror and see someone who is struggling. Hearing well-intentioned people telling you you “look great” can make you feel even worse, almost like you shouldn’t be feeling bad, down, or anything negative.
Because you look healthy, it is very difficult for people to understand that you may still be really struggling…. with nutrition, energy, loss of what your life “used to be” when you had a stomach. While you are going through it, you wonder if you will ever be “normal” again. Will you be able to exercise, run, chase your children, return to your job that is physically demanding…. will you have the stamina to get through the day???
As weeks and months pass after your surgery and people go back to their normal lives, there is an expectation that you will too. And you do…. And while you might be going through your normal routines, it is extremely challenging both physically and emotionally. You are not the same. You are not wallowing in self pity- after all, you know you are lucky to be cancer-free, an opportunity that many of our loved ones were not given. You don’t want to complain, because you know how lucky you are. However, you desperately want to get back to “the way things used to be,” to the days when simple tasks like eating and working did not require all of your energy. You wonder if having this life-saving surgery was worth it. Intellectually, you know it was, though psychologically and emotionally you are not so sure.
One of the trickiest parts of all of this is that “everyone is different.” What works for one person might not work for another. It is trial and error with so many things. It becomes overwhelming and exhausting.
I have just touched on a few of the issues that impact those who carry the CDH1 mutation. I realize that we are all at different places in dealing with it. Some of us are in our late teens and 20’s while others are in their 40’s, 50’s, and older. Each age group has unique challenges. There is a huge difference having a total gastrectomy at 20 versus 50.
My hope is that it will generate some honest discussion. We always want to provide a positive atmosphere because we believe that having hope and being positive are important to one’s physical recovery when dealing with any kind of challenge. However, we are realists, and know that there are many for whom physical and emotional recoveries have been very challenging, negative experiences.

Monday, November 9, 2015


The CRAZIEST thing happened this morning!!!

I walked into the gas station that I regularly visit & one of the gals that works there said she saw me on the news the other night. She pulled me to the side to ask me about my journey & what it's all about. Anyway, as we are talking a gentleman, in his 60's I would say, stopped us and said that he overheard us talking and asked if he could tell us something crazy about stomach cancer. He said he didn't know my story, but he wan...ted to share it with me. He said in 1975 he moved from the oil rigs to VALLEY CITY, ND and he was pretty buff and weighed a hefty amount. Shortly after moving there, he started to lose a lot of weight. It seemed like nothing he did would allow him to keep the weight on. He knew losing a little weight was possible as he wasn't doing as hard of work, but that much seemed crazy. This gentleman said he visited his friend who worked at the water plant one day and he was surprised by the ring of orange around the top of the tanks & the large green & blue particles in the tanks. He asked his friend what the particles were and he told him it helped to clean the water. The orange was from the not so clean water mixing with the particles. It got him thinking and he decided to no longer drink Valley City water and switched to Spring Water out of Buffalo, ND. He said he wasn't having stomach problems as much, started gaining his weight back, and just overall feeling better. He never did say if HE had stomach cancer, but he did say to be careful of what water we drink. He, also, said he's talked to several friends/family from Valley and it seems as if stomach problems/stomach cancer seems to be quite frequent that he hears of. He kind of left on that note. I'm not quite sure WHAT to think of that, but thought that was quite interesting! My mom would have been 15 and LIVING in VALLEY CITY at that time....he wouldn't have known way he could have. My grandpa was, also, living in VALLEY CITY at that time.

 So...of course, I've been thinking about this ALL day today. Yes, the kind of cancer I have an 83% chance of getting IS genetic, but usually in most cancers, it takes that "one thing" to turn it on. What if THAT was it??? Now, I'm curious to know if anyone else knows of this kind of thing from that time frame--1975ish-- and other people having issues??? CRAZY!

Sunday, November 8, 2015


Yesterday was the No Stomach for Cancer walk.  It was pretty chilly, but the walk went GREAT and was beautiful being down the river.  I am SO thankful for all of those who have donated, walked, been an extra ear to listen when I need to talk, and all who have kept myself & my family in their thoughts and prayers!

Here are a couple pictures from our walk!!
My hubby (Sean), daughter (Paige), & I after the walk.  Paige was beyond tired even though she didn't walk's tough riding in a stroller & being held. haha
Beautiful view along the Missouri River
Great crew on the walk

Wednesday, November 4, 2015


This is my mother, Darla. She found out at the age of 43 that she had stomach cancer, but it was a long road up to that point. My mom was having severe stomach pains & was staring to have terrible acid reflux in May of 2003 (the year I graduated high school). They did an upper endoscopy and found nothing….NOTHING? How could that be? She was feeling so awful!!!
The doctors suggested she try this and try that. They gave her many different diagnosis’ from acid reflux to a paralyzed intestine & stomach. In November of 2003, after projectile vomiting regularly and losing a large amount of weight in such a short time, they decided to do another scope. This time it came back as hereditary diffuse gastric CANCER (nothing anyone wants to hear!). We weren’t completely surprised as my grandfather had passed away from stomach cancer, also. The plan was to open her up and remove the cancer, but they didn’t really know how much would be there. After surgery, they came out and let us know they removed 80% of her stomach.
 She started chemo and radiation shortly thereafter. In February, after treatment, they said it looked like the cancer was clear, but would need to come back in June for a re-check. My mom returned in June to find out the cancer had spread EVERYWHERE. The only thing to keep her alive would be to do the chemo and radiation, but it wouldn’t get rid of the cancer. She agreed to doing that, but in November of 2004 she let my sister and I know that she was sick of feeling like bugs were crawling all over her, sick of throwing up constantly, sick of sleeping if she wasn’t throwing up and all from the treatment. She let us know that she was going to quit treatment and try to live life as normal as possible…it was about quality of life, not quantity at this point and she was one tough cookie all the way until the end.
 December 19th, 2004 my mom took her last breath. We miss her SO much, but are thankful for the time we did get with her and the knowledge we have gained about HDGC and the CDH1 mutation.

Sunday, November 1, 2015


NOVEMBER is Stomach Cancer Awareness Month and I am proud to support the No Stomach for Cancer non-profit group! I look forward to joining others around the country in our walk this upcoming Saturday in memory of those who have lost their lives to stomach cancer and in honor of those fighting for their lives and/or taking preventative measures to never have them/their family have to fight the great fight against stomach cancer. I hope and pray for a cure for ALL cancer!

Thursday, October 22, 2015


Sean and I figured out the details for our walk coming up Saturday, November 7th at 9am. We will be walking along River Road in Bismarck. We will start at the Steamboat Warehouse Historic Marker and go to Pioneer Park on Burnt Boat Drive and back. It ends up being 3.2 miles and about 1 hour to walk.
If you would like to join us in our walk, please let me know! If you would like to donate for stomach cancer research, you can do so at the following link, which is a link to my walk specifically:
I really appreciate ANY and ALL support- thoughts, prayers, kind notes, donations for the walk, etc!!!  THANK YOU!!!!!!!

Tuesday, October 20, 2015


LOVE my two VERY meaningful bracelets side by side....No Stomach for Cancer band and CDH1 band with the owl (for knowledge) and arrow (for strength/power)!!!!

Monday, October 19, 2015


HI ALL!!! So, I signed up for the No Stomach for Cancer walk which will be held on Saturday, November 7th and it is in any location in which you choose. I haven't 100% decided where I'm doing the walk other than in Bismarck (thinking maybe along River Road and in the 9ish maybe? details to come). Right now I have myself, Sean, and Paige doing the walk. HOWEVER, if you would like to walk along with us, you are more than welcome...just send me a message!! OR if you would like to donate towards our walk and support stomach cancer research, that would be appreciated, also! This is the link in which to do so:

I greatly appreciate any and all support and if you aren't able to come out and walk with me or you aren't able to donate (even $1 helps!), please continue to keep myself and my family/friends in your thoughts & prayers during this journey!

Thank you for ALL the support!!

PS: I most likely will not reach out to anybody individually to walk/donate as I do not want ANYONE to feel like they HAVE to and if all you can give is your thoughts and prayers, that's enough in my book!!!

Wednesday, October 14, 2015


I was feeling EXTREMELY overwhelmed the last few weeks and was even starting to get cold feet about this whole process. I was talking about this whole process with another person and all that this CDH1 mutation has to offer (ha..something like that). Anyway, they had suggested....why not just have a gastrectomy AND mastectomy at the same time? That way you won't have to have surgery, heal, have surgery,, you will have already met your deductible with insurance. It all made complete sense when you say it like that. She said if it were her, that's what she would do...then, she would see the plastic surgeon she worked for to help her out with her tummy and her breasts. So, it's not like she doesn't know what she's talking about and although, she's never dealt with this specific situation, she's seen a lot!

On the flip side, my brain started going a million miles a minute and I was feeling EXTREMELY overwhelmed. Is this something I COULD do, is this something I'd WANT to do? Geez...if you're going to take two BIG pieces of me away, why not just take everything for God's sake! I'm not trying to be overly dramatic about it, but this was a lot to take in at one time and something I hadn't even thought of!!!

I spoke with Karen, from No Stomach for Cancer, who has been beyond supportive, helpful, and caring. It helps when you talk with someone who has been through this all! She said she didn't even think it would be an option to do both at once. She, also, said that she had her complete gastrectomy, but has opted to just do the mammos & MRI's for now. Her niece, on the other hand, had a complete gastrectomy when she was 25ish and just recently had a mastectomy due to lobular breast cancer at the age of 31. (stupid CDH1 mutation!) She has put me in contact with her niece and I look forward to conversations with her! I'm not trying to discredit my counselor as she is very sweet and kind, but I felt it VERY helpful to talk with Karen as she has been there, done that! 

I, also, spoke with my doctor down at Mayo and she, too, said that there is no way they would want to do both surgeries in one day. She said that is way too much surgery for one person, at one time. I won't lie, this was VERY relieving! In the end, I'm not sure that I would have been able to do both at once....that's just a lot emotionally for one person. So, for now....going back to square one where, although, that too is a lot to take in....I think I'm mentally in place where I feel like I can do this and am not looking at turning back!

Monday, October 12, 2015


I am feeling a bit overwhelmed right now and this pretty well sums up how I feel :)


I should say, what I EXPECTED to be trial #3....
Called Mayo Clinic after getting a rather large bill (at least in my eyes) to set up a payment plan and they were SO pleasant and helpful and didn't make me feel like a jerk that I'm not a millionaire.  I literally DREADED this phone call and I am BEYOND happy with how well it went and how kind the customer service rep was!  Kudos to Mayo Clinic across the board....they have gone above and beyond with ALL my expectations so far!!!

Wednesday, August 26, 2015

Grey’s Anatomy Season 5, episode 17 “I Will Follow You Into the Dark”

Grey’s Anatomy  Season 5, episode 17 “I Will Follow You Into the Dark”

This episode makes things a little more real in regards to the CDH1 mutation as that is what this episode is about among other things.  When the three older children are talking about whom in their family had the gastric cancer, they talk about their mom, grandpa, and Uncle Buck having it.  That was like a HUGE punch in the gut and I literally got chills.  I felt like that was my life right there (minus Uncle Buck).  A couple things to note that are incorrect in the show if you plan to watch it:

1.        During surgery for one of the sisters, they “find” something.  This cancer does NOT form a mass, so they wouldn’t “find” something in those regards.

2.       Anal leakage/seepage is NOT a side effect of having your stomach removed.

A big thank you to my hubby and my Aunt Vera & Uncle Dalen for taking the time to watch this episode WITH me! J

Tuesday, August 25, 2015

This picture is from the No Stomach for Cancer facebook page and it couldn't be any more true!!!


"Several samples obtained at the time of prophylactic gastrectomy in asymptomatic individuals with a CDH1 mutation revealed occult disease on microscopic analysis even though each individual had normal screening tests prior to surgery.  These findings suggest that prophylactic total gastrectomy, rather than endoscopic surveillance, is the best preventative measure for individuals who have a CDH1 mutation."

That is word for word what my report stated from my genetic counselor after finding out my CHD1 gene is mutated.  What does that mean in simple terms??  These CDH1 mutation carriers who had ZERO symptoms, did tests, endoscopies, etc. and their results came back that there was NO cancer of any sort.  These people, because of their mutated gene and the 83% chance of still getting the hereditary diffuse gastric cancer, still decided to have 100% of their stomach removed.  Once the stomach was removed and biopsied, it was found that there were cancer cells.  I have read a TON of blogs and to be honest, I have only read one....ONE....where they tested fine before, had their stomach removed, and it came back with NO cancer cells.  THAT is crazy to me and solidifies for me why I WANT/NEED to get this done!!!

Saturday, August 22, 2015


I have not met with the surgeon, yet, so I’m sure after that I’ll have a more detailed explanation as to how this surgery goes, but I do have SOME information about it that I received from my GI doctor.

The plan is to do this surgery laparoscopically. This means, hopefully, there will not be a huge 7+ inch incision, but rather 5 small incisions and through those, they remove the stomach. (This is where I have questions myself…they pull the whole thing out of one of those incisions?? Or maybe they cut it up while inside and pull pieces out those incisions?? I don’t know, but I will surely find out!) If something goes not as planned or certain organs are in the way, then they end up doing the 7+ inch incision to remove the stomach. Laparoscopic would be ideal as it’s easier on your body during the healing process, so we will cross our fingers and toes it stays laparoscopic.

The operation itself is called “Roux-en-Y reconstruction” and what they do is attach the esophagus to your small intestine. Overtime, the place where your stomach was creates its own pouch. It will never replace your stomach in that it won’t be able to break down your foods or get you the nutrients you need the same way, but it creates a similar pouch as the stomach. From what I was told, the surgery itself is actually MUCH easier than gastric bypass. Recovery on the other hand, not as easy, but still manageable. Hospital time after surgery is anywhere from 3-7 days as long as all is going well. Like I said, hopefully I’ll gather much more information in about eight months when I meet with the surgeon! Attached are pictures showing before and after surgery.

Sunday, August 16, 2015


I get that this whole process is NOT for everyone and that's ok.  To be honest, it might not even be for me if I didn't see my mom go through it.  Pure hell is an understatement and she was tough as nails and barely ever griped about the ordeal (at least to my sister and I she didn't)!

With that said, there was a question as to why I'm bothering dealing with all of this?  Why not just let life take its course, not worry, and deal with it when and if it happens.  Really, you could suffer or die from many different things or even get "hit by that bus." 

WELL, I guess my answer is.....I don't have an 83% chance of "getting hit by that bus" and if I did, I'd never cross the street.  ;)  Also, I don't want to WAIT "until it happens, if it happens."  By then, the likelihood of me surviving isn't very good and I would like to be here for daughter & husband as long as possible.  Stomach cancer is the THIRD leading cancer for deaths.  At 83% of a chance, that's too risky for me when I know you can have this surgery done and have a 0% chance of EVER getting it. can live just fine after! :)

Saturday, August 15, 2015


"You have an 83% chance of heredity diffuse gastric cancer. In my eyes, it's not a matter of IF you have your stomach removed, it's a matter of WHEN. This is not an URGENT matter, but I would definitely put it in your plans in the next few years." That's basically word for word what my gastro doctor at Mayo Clinic said. After a TON of research and reading blogs, I 100% agree with this. I, actually, pretty much had my mind made up before I walked into their office. I still wanted to have an open mind and was secretly hoping they would say something like, "Hey, we have this cool new thing we just found that gives you NO chance of HDGC." The likelihood of that wasn't very likely, but I was very open to everything they suggested. I did ask what would be suggested if I DIDN'T have my stomach removed. I could either do nothing, but that'd be silly because that's the reason I wanted to find out about this gene to begin be preventative... OR do scope every six months in HOPES they find something before it's too late. I asked if there was anything I could do, eat, try, etc. to prevent this cancer from coming about instead. The answer was, "No, it's in your genes, unfortunately. I would love to say if you take this magic vitamin or work out and eat healthy that it would prevent it, but I can't. I'm not saying DON'T eat healthy and DON'T work out, but they won't necessarily help you to NOT get this cancer." My thought is that you CAN LIVE without a stomach, but if I wait in hopes they would catch something IF it ever came about, my chance of survival IF they did find something is less than 20% over 5 years. Yes, there will be a TON of changes, but I will NEVER have to deal with this awful cancer that I watched kill my mom. It was terrible and I don't wish that on ANYONE! A lot of things I read came from the "No Stomach for Cancer" non-profit group out of Wisconsin. AMAZING info with a TON of blogs of people who ARE living without their stomach and are going through the same journey as I. is their website if you care to visit it and this is where I'll be sharing my blog, also. So, honestly...if I could get this done ASAP I would only because I feel like you heal faster while younger and I really just want to get on with life and figure out my "new normal." Well, that's not realistic. So, plans are to do a complete prophylactic gastrostomy next year, August 2016 (when I will qualify for disability insurance). I will meet with the surgeon in about 6-8 months and get even more questions answered. So, the count down begins....

Friday, August 14, 2015


TRIAL #1- Insurance. That should be enough said right there!

Well, for starters, I guess you could say I didn't 100% have my poop in a group.  Didn't have life insurance lined up as we were trying to pay a few other things and kind of put that to the way side. Well, NOW I will not be approved for life insurance with this darn CDH1 gene and all the risks associated with it. (Still going to check out and try for some plans that have no health questions asked with low pay amounts since some is better than none....and maybe I could just do a few plan instead, then?) Thought going into all of this, I better get my game plan figured out, so started looking into hospitalization plans, disability plans, etc. Well, will not/do not qualify for the hospitalization plans...never will....not even if I wait a waiting period.  (I shouldn't say NEVER...I do qualify for the two lowest hospitalization plans, but preferred the 4th plan which is the one I'll never qualify for.)  Disability I am good to go on, thank long as I have a letter from my doctor deeming whatever I do "medically necessary" AND I have to wait 12 months. I think I can manage to wait 12 this gives me more time to think, figure things out, and save up.  My doctor said it would not be a problem to write up a letter deeming this medically necessary and asked if I wanted one written up that day.  I decided to hold off until closer to procedure day.  Oh the joys of insurance....I think that's an overall feeling whether dealing with the CDH1 mutation or not!!


I expect a TON of trials along this journey...

 Here is TRIAL #2 (where's trial #1 you ask??  well, I'll touch on that in a different post). I had decided in the last month or two that it would be nice to have some extra cash and started donating plasma, again.  Well, walked in the other day ready to donate, as usual, but have to wait 4 months after having an endoscopy before you can donate. Well, by the time 4 months is up, I'll be just about ready for my second scope. 

Oh, but wait...there's more!

They wanted to know why I had the scope and it lead into the whole story of all of this. Although they found it VERY interesting, that didn't help my situation. They said they would take my info to their higher ups, but expect to never be able to donate again going forward. Booooo! Not a huge deal and just a step along the way, but still disappointed me.


I want to be very open and honest about EVERYTHING here for everyone following along.  I appreciate all of your support, questions, comments and will answer things as we go, so keep them coming!!!

 This one I heard on the side and not directly from the person it came from....and that's ok, too!
"Why wouldn't you get a second opinion? This is a lot of information to take in with a lot of decisions to make?"
I emailed my genetic counselor on this. Although, I FULLY believe what he is telling me and did not even second guess a second opinion, I still emailed him on this. He as 2 answers:

1. Well, your genes are your genes. You can't really change them. It's not like I'm telling you that you have a certain condition or cancer. I'm telling you how your genes read. 
 2. Usually patients come to Mayo for a second opinion. Not sure if there is somewhere else you might want to try for a second opinion or if you would want to do another blood draw and have it reanalyzed?  He fully believes in their lab with all the strict guidelines and regulations they have . He said the only thing would have been if my blood sample got switched, but that would be quite odd with how rare this is.  It would be one thing if it came back with a mutated CDH1 gene, but I never had any family history of HDGC or lobular breast cancer. Then, again....that's the reason I am being seen there....because OF my family history! ;)


The ONLY way you can carry this CDH1 mutation is if it's carried down by a parent. My mom was not tested for this, so I had NO idea what would come of this. Could have come back positive, negative (still would have a chance of stomach cancer since it's in my family, but wouldn't have been as preventative about it), or inconclusive (something weird going on with the gene, but not sure what). So, although having it come back positive (thanks mom) isn't GREAT, I look at it as better than the other two options.

Now, this means my mother obviously had the mutated gene along with either my grandmother or grandfather. This, also, means my sister, my maternal aunt, my maternal uncles, and my daughter, Paige, all have a 50% chance of having the mutated gene.  I can't speak for everyone else, but I know we will have Paige tested in 10-15 years IF she wants to know. It's worth it to wait that long with science changing and letting it be her own decision.  Once you test negative, that gene will never be found down the line (ie: it doesn't skip generations).  So, that's how that works.  Finding out isn't for everyone and that's ok.  Seeing all my mom went through first hand and how awful it was helped me decide I wanted to know so I can be as preventative as possible and hopefully NEVER have to deal with that OR have Paige watch me go through that!


SIDE NOTE:  If you are reading this and paying attention to the date/time, you may be thinking what the heck?  Why is she posting all of this stuff at once??  WELL....I do have good reason for it.  I had, originally, started a facebook group to get awareness out there as most of my family and friends use facebook.  I made it a "secret" group to tweak a few things and then get going on it.  WELL, once you make it a "secret" group and add people, you can no longer make it "public," anymore.  So, I decided that I didn't really want to create another group AND it would be good for anyone NOT on facebook to be able to find info,, here we are.  I'm pretty much copying and pasting what I had on facebook and then going forward, I will write in both!

FIRST ENDOSCOPY (hopefully not too many more after this one!)

As I sat at Mayo Clinic in Rochester, MN waiting for my first endoscopy (scope/biopsy of my stomach), I was STARVING....had to fast for it, so was trying to stay strong until after (scheduled at 12:30, but my doctor said they usually run late).  Don't let the location of "Mayo" scare you!! Everything I'm currently doing is to be PREVENTATIVE!!! I would like to be around for least through my daughters proms, graduations, wedding, babies, etc. and a lot of these my mom did not get to experience.  So, there I sat with a growling tummy, but that's ok...not always going to have that feeling, so I'll take it while I can, I guess!

The endoscopy itself was not the most comfortable thing I've ever done especially since I was not fully put to sleep for it.  My throat, even now after 3 days, is still a little sore.  (Don't worry...I made sure to treat myself to nice big ice cream on the way home to soothe my throat since I was such a good girl for the scope.)  I got my test results back yesterday and NO CANCER....yay!  I didn't expect there to be since I'm not having any symptoms, but anything is possible.  On the flip side, they did find that I have gastritis and H. pylori.

"Gastritis is an inflammation, irritation, or erosion of the lining of the stomach." (I copy pasted that sentence from WebMD.)  Of the list of things that cause that, the only one that holds true for me is stress. Gastritis could, also, be... the cause of the H. pylori.

"H. pylori is a bacteria that lives in the mucous lining of the stomach; without treatment, the infection can lead to ulcers, and in some people, stomach cancer." (also, copy-pasted from WebMD) Sounds like you can get H. pylori from just about anywhere.

 I will start a 2 week round of 2 antibiotics and an acid reducer. My doctor is thinking that with those 3 things, it should take care of the gastritis and the H-pylori!


Having my CDH1 gene mutated means I have an 83% chance of Hereditary Diffuse Gastric Cancer (the same cancer that killed my mom and most likely my grandpa (even though his death certificate lists a different kind of stomach cancer, my genetic counselor thinks because there wasn't a lot of information about this cancer when he passed, it very well could have been listed incorrectly)). The average onset age of this cancer is 38 (my mom was 44 years old when she passed) and by the time you have any symptoms evolve, you are usually in the 3rd or 4th stage of cancer (NOT GOOD!).  Did I mention....LESS THAN 1% OF AMERICANS get this Hereditary Diffuse Gastric Cancer (HDGC is what we will call it going forward).  So, I really want to be on top of my game here since it is so rare and aggressive.  With this I have 3 options:
1. Do nothing (not my cup of tea)
2. Do scopes/biopsies every 6 months in hopes they catch it sooner than later (this cancer is not like others in that it doesn't form a mass, but rather engulfs the whole stomach and doesn't even show up on any xrays or anything like that, so scopes are the only way to catch it IF they biopsy the correct part of the stomach and how are they to know what part of the stomach is the "right part" which is how they missed my moms cancer during her first scope).
3. Complete Prophylactic Gastrectomy (complete removal of the whole stomach done on a preventative level). 

 Also, this means a 60% chance of Lobular Breast Cancer. They say starting at 35, I need to start doing mammograms and MRI's every 6 months. I did, however, start with my first mammo today at 30 years old since they "found something suspicious."  Everything came back just fine, so I will see them back in 6 months for an MRI.  Also, I will continue to focus on my stomach.  My primary doctor said they are way more advanced in breast cancer research then stomach cancer, so she agrees focusing on the stomach is ideal.
Uffda (yes, I really said uffda....I am from North Dakota after all ) that was a lot of info at one time....I'll let that process for a bit and then continue on.

Thursday, August 13, 2015


So, how did all this crazy stuff come about???

Well, I saw my primary doctor for my annual visit and she said, "Ok, you are 30 now and I really think we need to be preventative however we can on the stomach cancer stance so I'm going to refer you to a gastro doctor here in Bismarck." Perfect! Anyway to be preventative I am 100% game for!

So, I met with a Gastro doctor in Bismarck who, let's be honest here...I mean that's what I'm all about, I did not care for in the slightest! ...Anyway, she asked why I was there and I explained my mom died at 44 years old of stomach cancer and so did my grandpa. I was there to be preventative and not walk in my mom's shoes. She asked if I had certain symptoms and the only thing was heart burn, which I can control by not drinking pop and eating chocolate. She did a physical stomach exam and said, "Ok, plan is to let us know if you have any other symptoms and if not, we will see you back in 10 years." TEN YEARS???? So, when I'm 40 and about the time when my mom maybe started getting a few symptoms?? That was NOT going to fly with me. She got to the door to walk out, looked back at me, and I'm guessing she saw my jaw hit the floor. She shut the door, came back in, sat down and asked why I didn't seem comfortable with that. I told her exactly why....I want to be here for many more years to come and this visit was pointless if that's all she was going to tell me. She, THEN, asked a little more about my mom's cancer. At that time, I didn't know a lot....the cancer kind of engulfed her whole stomach, it's very rare, hard to detect, generally Asians get this, and may have come from too much Advil. That's all I had. She did some searching on her computer and said, "Ok wow! I'm glad you stopped me. To be honest, we have never dealt with this cancer here. Less than 1% of people get it. Our best bet is to send you down to Mayo Clinic as they know most about it and can let you know everything there on how to prevent it."

So, met with an AMAZING genetic counselor at Mayo Clinic who went over ALL the details of the CDH1 mutation. We decided to do the test...there was only a 25% chance it would come back positive since we had nobody else in my families test results to go off of. Did the blood draw (simple and expensive process) on April 27th. Got the pre-authorization back from insurance company showing it was approved the middle of May, then 4-6 weeks later got the call that I tested positive for a CDH1 mutation. I wasn't really sure how to feel.  Being a pretty positive person, I took this as maybe not the BEST thing, but the alternatives could have been worse.  The results could have come back negative & I still could have ended up with stomach cancer and never did anything to be preventative.  I could have tested inconclusive and that would mean something weird is going on with my gene, but they're not sure what.  (To be honest, inconclusive would have driven me CRAZY!)  So, testing positive isn't SO awful...not like they said I HAVE cancer and guess what, I have options to be preventative!!!

From there, was referred to the GI department in Mayo to go over my 3 options and had that done on Monday, August 10th along with my first endoscopy to follow Tuesday, August 11th.  Will talk about my 3 options and results in a separate post as this one is getting a hair long! :)


Hi all!  Thank you for following me on my journey of finding out I'm partially related to the Teenage Mutant Ninja Turtles.  Ok, it maybe doesn't go quite like that, but I do have this crazy CDH1 gene that just happens to be mutated. Sounds kind of cool, but in turn, it's going to have me on this crazy journey in life. I am going to blog my experiences here for friends and family to follow along. Also, I have found it BEYOND helpful to read other blogs, so I'm hoping to do the same for others who are on this crazy journey, too! (Oh and my counselor says it's a good thing to journal.) Feel free to leave comments, questions, etc. This post doesn't give you a lot of detail about this gig, but I promise to let you all know the details as we go on. Thanks for following and allowing me to share my "Gut Feelings: A CDH1 Journey" with you!!!