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.