Tuesday, January 26, 2016


Insurance….enough said. You don’t even need to continue reading…haha!
I will start by saying that I am SO mad at MYSELF and dang insurance can sure suck! Sean’s employer was changing insurance companies the first of the year, so I thought I would look at all of my options. I decided to switch myself to a plan which I thought was the SAME EXACT plan through Medica (word for word it was named exactly the same) that Sean had previously (especially since I knew everything up to this point with this CDH1 gene has been covered and they know the ins and outs of what’s going on). Looking through the benefit booklet, they were EXACTLY the same plan (like I said, even the plan name was called the same darn thing). Working with insurance currently and being that I used to work for an insurance company, I kind of know the ropes. HOWEVER, I did not realize you could have the SAME exact plan to a T, but the deductible and out of pocket maximum could be different….drastically different. When I called to talk to the radiology department about my upcoming MRI, they let me know that I would owe $500 out of pocket the DAY of the MRI since I have a $1250 deductible. I was like…wait wait wait…that can’t be right. It should be a $500 deductible (that’s what I knew of Sean’s plan, anyway). So, I called Medica to find out that they have a few different plans which are exactly the same no matter who takes them out, but the deductible and out of pocket maximum can vary. HOW DUMB!!!! What I know of insurance companies that I work with are that if they have ANY change…the deductible is a little bit different or something is just a tiny bit off, they get a WHOLE NEW PLAN…WHOLE NEW PLAN NUMBER …WHOLE NEW PLAN NAME and everything!
SO…this was on January 15th. I had Sean get in touch with a lady from HR at his work to see if there was any way to get be BACK on his plan….his NEW plan…that would still have a $500 deductible and $3000 out of pocket maximum vs. what I signed up for which is a $1250 deductible and an almost $7000 out of pocket maximum. Of course, we are being given the run around and making it seem like it’s a BIG deal to get me added back to his plan. Although, when I talked to the new insurance company (BCBS of ND), they made it sound like it would be NO big deal especially since we were only half way through the month and they just signed on as of 1/1/16. Well, forms and application were submitted last Friday from the HR dept. and I’m waiting to hear back. I plan to keep BOTH insurances, if possible, only because it will truly be beneficial with ALL that’s going on. HOWEVER, if I can’t get added back onto Sean’s plan, then EVERYTHING (MRI included) will have to wait until NEXT YEAR when I can be added back with open enrollment since there is NO WAY I’m going to pay $1250 for a deductible and almost $7000 when I could just do $500 and $3000. Thank goodness all of this is somewhat elective and I’m not in an emergency situation (knock on wood)!
I am scheduled THIS Friday for my breast MRI and then have my BIG Mayo trip with the endoscopy, meet with my GI doctor and the surgeon in March. I just really hope it doesn’t mess it all up. ALL IN ALL….READ EVERY SINGLE LITTLE EVERYTHING of insurance stuff….or anything for that matter! I know better, but with ALL that’s going on right now and everything I have to think about (our house being on the market (dumb idea with everything else going on), my sister having a baby soon, this surgery coming up, all the appts that go with this) I think I just bypassed it and ultimately it is my own fault. On the flip side, I COULD REALLY USE SOME PRAYERS RIGHT NOW. I really wanted to get this done and over with and if I have to dwell on it for another year….UGH. I just don’t want to! I know that whatever happens is God’s way of showing me the road, but dang….it’s hard when things just don’t go quite as what I have/had planned, but they say everything happens for a reason, right??

Friday, January 8, 2016


So, not only does this CDH1 nutation give me an 83% chance of hereditary diffuse gastric cancer, it also gives me about a 60% chance of lobular breast cancer. Because there are SO many more ways of detecting breast cancer and the research is way more than stomach cancer, I am going the route of doing scans/x-rays (at least for now).
In August, I did a mammogram which came back just fine. Now, I'm getting ready to do my yearly MRI of my breasts. I didn't realize how much would go into a MRI and especially of your breasts!
I had to go to the clinic today to do a "test run" with the MRI machine. Because of the positioning of the person and the extra bulky box they put in with you, they wanted to test and make sure that this box that your boobs just hang into HAHAHAH and myself fit (the opening in which the box and I have to fit is 60inches). The news- we both fit with ease! If we didn't both fit, then I would have to go over to the hospital where their MRI machine is bigger. Glad we don't have to go that route! Also, I have to call them on the first day of my womanly cycle and then we do the MRI 7-10 days from then. We have to wait due to the hormones that come from the cycle. Crazy information I learned!!! :) Attached is a picture of what it looks like to do a breast MRI and come that time, it will take about 23 minutes. I was hoping to pop some music in and take a snooze on my back like most people do when having an MRI, but nope....I wonder since I'll be in the right position to get a massage, if I could talk someone into that! ;)

Tuesday, January 5, 2016


I hate to be a “negative nelly” and am generally a pretty positive and upbeat person, but I will tell you that a lot that goes with this mutated CDH1 stuff is really getting me down.  Things/people I wouldn’t think I would feel that way about and that really stinks.  If you are reading this hoping for an upbeat and bubbly post, you better move onto the next one.  HA!

I seriously have thought for some time about even posting this, but then realized when speaking with my counselor that she told me to journal all of my feelings, everything that happens good & bad, and just put it all out there.  It will help as a form of release (and to be honest I’m at my breaking point right now….I feel like I may break, so I’m hoping by allowing this “release” it will help me to feel better?).  Also, trying to make things seem hunky-dory isn’t being very honest with myself or you guys, for that matter, since I have agreed since day one of creating this blog, to be 100% open and honest about everything.

Here we go….when I first found out about this mutated gene I figured I would reach out to the people that mean the most & that would care no matter what.  There was about two handfuls of people I thought I would and should let know right away since they are people I care about without a doubt and also this could potentially affect their lives.  I figured I would send a mass Facebook private message to these people and that way if there were any questions or anything, it could be openly discussed between everyone and I wouldn’t have to go 10 different people 10 different times to explain the same thing over and over again.  Well, I sent this BIG long message about the CDH1 mutation and all that goes with it.  I got ONE response…ONE!  Ok, I get it…that’s a LOT to take in and really did I expect ALL of them to write back?  Goodness no…in fact, I figured at least 2 wouldn’t say a THING back and that’s ok!  I’ll let it sink in and go from there.  I sent another message a few days later to these same about 10 or so people letting them know about the Grey’s Anatomy episode if they wanted to watch it.  Again…nothing.  I did verbally talk with one of them in person and other than that….that’s it.  Of these two handfuls….TWO have said something to me in regards to it.  I’m not looking for sympathy…in fact, I don’t want that AT ALL.  HOWEVER, this is a big deal….this is what killed my mom & grandpa….so even a simple, “Hey, I’m thinking of you,” “Hey, if you need something, please let me know,” “Hey, I’m here if you need to talk.” Nope…NOTHING!  Not a THING was sent back.  I don’t know if it’s just me, but that was VERY hurtful.  I do NOT expect everyone to understand or even agree with what I’m doing, but I guess the people I expected the most support from, just to be there, are the people that aren’t.

On another occasion, someone I am particularly close with (or so I thought) advised me that I was not allowed to bring any of this stomach stuff up at a family event.  If I did or they heard it being talked about by anyone, myself and the people/person discussing it would be kicked out of the event.  WHO SAYS THAT TO SOMEONE?!  It’s not like I’m out blabbing it to everyone…I think I know when the right time to talk about it is and it’s not like I’m going to be like, “Excuse me every single person at this event, I need to make a huge announcement.”  GET REAL!  To even think that this conversation even existed royally pisses me off.

I’m not sure why some things occur, but maybe there is a reason some things come about.  In this case, to see people’s true colors?  It is unfathomable to me the things I have experienced with this whole CDH1 mutation.  Believe me, if I could know I would be ok keeping my stomach and that I’d never get the cancer that took my mother and grandfather’s lives by doing this or that, I surely would be doing this and that.  HOWEVER, there’s nothing I can physically do MYSELF to prevent myself other than having my stomach removed.  IT’S GENETIC!!!!!  Yes, I can keep myself healthy…eat a balanced diet, workout, take every supplement known to man, but even that doesn’t guarantee anything.  THIS SURGERY guarantees NO stomach cancer and guess what….I CAN live without a stomach.  Might I get something else?  Sure…and if I know of a way preventing me from that, I’ll surely try to protect myself, but for myself this IS the right thing to do.

On the flip side, I have had an overwhelming amount of support from SO many people.  Even people who have come out of the woodwork…people I haven’t talked to in YEARS.  And for that, I am SO SO grateful!  I may have already driven myself crazy if I didn’t have those who have been there…listened when I’ve needed, just chatted about the whole ordeal, asked questions….just straight up BEEN THERE!  You are the people I NEED in my life and people I appreciate.  I have learned through all of this (and I’m not even done, yet, and am just getting started), that there are people we expect to be there for us through anything in our lives and they just straight up aren’t….only when they choose to be.  Then, there are those we have pushed aside and strayed away from and those people are true and caring people who will lend you a shoulder to cry on, be there to talk to when you need someone to talk to, and just straight up be there because THEY DO CARE….ALL the time…no matter WHAT situation you are in.  THANK YOU to those people and to the people that fall in the first part of this, SCREW YOU (family included in this….sad, I know!)!  I don’t need you in my life if that’s how you are going to treat me and I straight up don’t have time for it.  Life is far too short to deal with people like that.

Sorry for the rant, but I REALLLLLY needed to get that off my chest.  I have an appointment with my counselor next Thursday and am hoping she really helps.  So far 2016 has been a crappy year and I’m ready for it to be over.  However, we have a LOT more of it to go haha….so hoping talking with her can give me some relief.  Being at my breaking point has been overwhelming and well, I hate it! ;)


My next Mayo appointment is scheduled for the middle of March. Will have another endoscopy, meet with the GI department, and surgeon. Glad to cram it all into one day this time so hopefully our trip will be a quick one. ;)
Also, MRI of breasts is to come the end of this month/February.