Wednesday, November 13, 2013

Li-Fraumeni and Me

I jinxed myself.  Completely and totally.  Since my last post, I've had terrible sinus headaches and behind my eyes hurt and I'm more tired then my usual tired, exhaustedness.  Oh yeah, and I have sores all over my gums and on the back of my mouth.  I'm nine days out from my chemo and I feel right now like I do on my day five. 

I've also been down lately.  I think finding out I have Li-Fraumeni Syndrome has really taken a toll on me emotionally and has set me back physically with chemo #4.  I mean, having it, fine, ok, I've checked off one of the cancer's that I could have gotten, and trust me, I'm blessed that I did not get a childhood cancer...but knowing that there is a 50/50 chance that I can pass this on to one of my kids REALLY bums me out.  I'm holding onto hope that the eggs that didn't survive were the "bad" ones...but I can't help but wonder that out of 19...8-ish may have it, and I only have six that are chillin'.  I guess I'm anxious to get them tested, but worried about the cost of it, as well as the fear that most or all of them could have it.  And where would that leave me...with a wasted fertility treatment and an empty heart.

Anyone that knows me, knows that I get feelings about things and while not all the time I am right, a good majority I am.  About a week before we met with the genetic counselor, I was driving home and had this overwhelming feeling that I would be lucky enough to have an "oops" baby sometime in my future, and it made me truly happy.  Well, finding out about the Li-Fraumeni Syndrome and the 50/50 chances of passing it on kind of puts a damper on that. 

I just want to be like everyone else and be complaining about not getting enough sleep because they've been up with their kid all night, rather then not getting enough sleep because of the stupid chemo meds.  Or be complaining about being nauseous from being pregnant rather then being nauseous from chemo.   Or be posting pictures of my kids growing up all over Facebook rather then "Chemo #4 is Done".  It's just really hard for me right now and it sucks.  Most of the time I don't mind seeing all the photos of everyone's kids, but I guess I have my moments and wish that Facebook had a filter so I didn't have to see them on my feed during those times.  Oh yeah, and I wish I could filter some of the political crap too. :)

I know I should be grateful for my loving husband, caring friends and co-workers, a roof over my head, the fact that my cancer was caught early and the advancements in technology that I have the knowledge that I do.  I am, trust me, but I guess right now I'm just sad and in a funk that hopefully I get out of soon cause this is getting old, fast.

grateful, li fraumeni, breast cancer survivor, survivor, healthy life, love

I feel selfish for feeling the way I do.  I have these "why me?" moments, then I cry, then I feel guilty for all the people who are going through worse.  Then I feel sad.  It's my cycle I go through.

All I want is to fast forward through all of this and be at the point where I am looking back on this in 15 years with a child of my own who hates me....


  1. Emily, I'm really sorry you have to go through all of this. When you talk about your treatments & how your feeling I know what your talking about. I never had cancer myself, but Dan did. He was only a year & a half when I found out. My whole world came crashing down around me. He had to go through radiation & chemo. He was on chemo for a year. I went once a week with him. I know what chemo does to you. I was 23 at the time. I was so dumb, I thought Kids don't get cancer. Older people do. I learned very quickly how wrong I was. This was one of the 1st most difficult times I would be going through in the course of my life. I'm very blessed to have Dan here with me. Back in 1974 they didn't have anywhere near the technology they have now. I know your feeling overwhelmed because you have had to deal with so many things. As you said you have many good things going for you. You couldn't have a better support group then your family and friends who love you dearly & would do anything they can to help you through this. I feel the best thing I can do is let you know how much I care about you & let you know I'm praying for you. Keep letting us know how you are doing & what is going on in your life. I wish you nothing but the best. Have faith in God that He will help you through this & give you the strength you'll need to see this thing through. God Bless you. Chris Secker

    1. Thank you! I appreciate your kind words! This was just another bump in the road for me and Chad but we will get through it!!