Tuesday, January 30, 2018

Life insurance

I have a friend who is a nurse in genetics.  She recently brought me all kinds of literature to read and catch up on. I’m reading as much as possible to soak all this in and be able to make informed decisions when interviewing surgeons.  I am so thankful for her support. In her words “it’s going to be okay.  This sucks.  It sucks really bad actually.  But it’s going to be okay”.  She asked if I have life insurance.  Which I do...but it’s a policy through my job and if something happened where I’m no longer able to work or I switch jobs, this could be an issue.  So now I’m trying to get an independent life insurance policy, which is stressing me out that they will find out about my genetic mutation and deny me, which would just kind of suck.

Today, the life insurance examiner came to the house to do his assessment. I was so nervous.  He definitely did not seem to enjoy his job and just wanted this process to be over with.  So, he never once asked about any genetic testing!  Phew!!  Bullet dodged and now I wait to hear if my application has been accepted.

Tuesday, January 23, 2018

Life may suck at times, but life is amazing

Matt and I met with the genetic counselor at MD Anderson (Rebecca Luiten) today.  She was amazing.  We spent almost 2 hours with her learning about this gene mutation. Unfortunately she confirmed what little information I already knew.  She assured us that people who have had a PTG (prophylactic total gastrectomy) are doing very well and leading very healthy normal lives.  It usually takes about a year to get back to a new normal, but after that people are doing very well.  The key to this mutation is I have a very high chance of getting HDGC (hereditary diffuse gastric cancer) which means it’s in the lining of the stomach.  Because it is in the lining it is very difficult to screen for this type of cancer and by the time it is found the cancer is usually in very late stages and I wouldn’t have much of a chance to fight it.  Which is why they are recommending a PTG to guarantee I don’t get HDGC.  My risk of getting HDGC would go from over 80% to zero chance.  My mind tends to gets ahead of myself and I’m feeling a bit overwhelmed, anxious, and sad.  At this point in time I think I’ve decided to go ahead with the surgery. I do not want to be in my dad’s situation (finding gastric cancer and having 3 months to live) at any point in the future.  I want the chance to be around for my kiddos for as long as possible and I don’t ever want them to experience what I did when my dad was diagnosed.  So I am feeling so lucky to have the choice to prevent this awful cancer and remove my stomach.   It’s just a matter of timing. The genetic counselor recommends doing it before I turn 36, which is 10 years younger than my dad was when he was diagnosed with gastric cancer.  So, I have 3 years to play with.  I just don't think I can wait that long as I kind of feel like a ticking time bomb at times.  And I honestly don't think any time is better than another.  I just need to take my time finding the right people to care for me.  I'll meet with the gastroenterologist to get my EGD done and over with.  Then I'll slowly start researching surgeons and having consults.  I have the tendency to fixate and obsess with decisions I need to make, but this time I am going to take it day by day and still live my life as normal while plugging away at all the work I have to do. 


It’s amazing how the grieving process works.  I’m actually surprised it only took me a couple short weeks to come to the conclusion that I am so lucky to have this choice and chance to stick around for my kiddos.  This has really made me look differently on life.  To live life to it’s fullest.  To enjoy my kiddos everyday.  To slow down and take in all the little moments.  To stop worrying and stressing about the little things that don’t really matter in the grand scheme of things.  To be nicer to my husband; he isn’t perfect either and I shouldn’t expect him to be. To laugh everyday.  To do the things I really enjoy in life.  To tell the ones close to me that I love them at every chance I get.  To give hugs more often and squeeze a little tighter and longer.  And to be thankful for this amazing life I have.  

Wednesday, January 10, 2018

Ugh, why me?!

My best friend called me today.  She works closely with many types of surgeons and started asking around and doing her own research and she tells me “we gotta get this shit figured out”.  She asked around some more and did some more research and then says “you got this.  You can totally live without a stomach.  There are lots of people living and thriving without stomachs.  I know that’s not what you want to hear right now, but you have to do this.  And I know a very skilled surgeon who would do it laparoscopically”.  She went on to give me contact info for this surgeon and our conversation ended.  

I was at work again today and just couldn’t believe my life was coming down to making this decision.  It angers me so much, I would just rather not have known about this.  When I think about my kids I just get super sad and know I want to be around as long as possible for them.  It’s hard to imagine them growing up without me, their mommy, around.  I opened up and talked to a couple people at work as my colleagues, supervisors, and managers are super supportive.  I just felt the need to talk about it.  Plus, I feel pretty close to several friends I work with. 

Tuesday, January 9, 2018

They recommend what?

Today, while working, I had the bright idea to google CDH1. That was a very bad idea.  I found a website called nostomachforcancer.org which seemed legit, so I started reading.  I immediately broke down, started crying and felt hopeless.  I read CDH1 gives you a very high chance of producing HDGC, hereditary diffuse gastric (stomach) cancer, and that the recommendation is to have your stomach removed.  What?!?  How do you live without a f*cking stomach?!  What kind of life am I going to have?!?  This was a rough work day.  

I called my best friend on the way home, who is also a medical professional, and she had never really heard of this either.  She tried to calm me down, told me to take it one step at a time and everything was going to be okay.  But she didn’t understand.  She didn’t read what I read.  

When I got home I told Matt, my husband, what I had read.  He could tell I was all worked up, anxious and worried.  He made me promise I would not do any more research online until we meet with the genetic counselor and told me to calm down, take a breath and that we would figure this out.   I’m really hoping the genetic counselor with have more promising information and know something I don’t know at this point.  I’m feeling so angry I ever even got tested for a genetic mutation to begin with. The whole reason I did was because of my family history of breast cancer on my mom’s side and now this.  Ugh.  And why would I ever want to have to make the decision to remove my stomach?!?

Monday, January 8, 2018

CHD1? What the hell is that?

The day I found out about this CDH1 mutation was the day I was diagnosed with it.  

I agreed to genetic testing because there is significant prevalence of breast cancer on my mother's side of the family.  I was 100% ready to find out I was BRCA positive.  My initial results came to my house via the mail and stated I was BRCA negative.  My husband was very excited and couldn't understand why I wasn't feeling the same.  I didn't know how to explain it at the time, but something just didn't feel right about it.  

When I actually read the report it stated I had a variance of unsignificance in my CDH1 gene, which at the time I had no idea what that meant and just pushed it aside.  Just a few short weeks later I received a call from my gynecologist's office, my genetic testing ordering physician.  They stated I needed to get a mammogram as soon as possible and to set up an appointment to see my gynecologist as soon as possible.  This worried me...what did this mean?  The earliest they could get me in for an appointment was 2 months away.  So I patiently waited for the time my husband and I would sit down with my doctor - because we had a feeling it was not going to be positive news.  The appointment day finally came and my doctor states "you have a genetic mutation called CDH1."  I"m thinking, what the hell is that and what the hell does it mean?  She told us it increases the chances I have to getting gastric (stomach) cancer.  I immediately started crying as this information started bringing up all sorts of emotions and memories of the time surrounding my dad’s stomach cancer diagnosis and death.  

When my dad died from stomach cancer 10 years ago the doctors assured us it was not genetic.  So I’m feeling completely blindsided.  My doctor didn’t have much else to say because she didn’t know too much about this genetic mutation.  She assured me she will find a genetic counselor who will be able to educate us more and have recommendations for screening and such.  I went home after this appt and honestly didn’t think much about it.  I felt I just need to wait to get the contact info for the genetic counselor and go from there.  There was nothing I could do at this point so why stress about.  So, that evening was per usual with the kiddos and getting ready for work the next day.

A Day in the Life - seahorse edition

I’ve gotten my eating and drinking routine down pretty good now. I have a really good grip on what helps me feel my best and what doesn’t. T...