Why me?!

       From talking to and reading about other cancer patients and survivors, I know it's very common to ask, "Why me?" However, I think what many people are really asking is "How did I get cancer?", not, "Why?" This seems especially true for young adults. I mean, we're not supposed to have to worry about cancer for another thirty years, right?
       "Was it something in the water? The soil?" "Did I not eat enough vegetables? Not exercise enough?" "Do I live too close to the power lines? Was it all those plastic water bottles?"

       I happen to know how I got cancer. I tested positive for a genetic mutation that increases your risk of stomach cancer to 80% and makes it especially more likely in younger adults. This is called Hereditary Diffuse Gastric Cancer and the gene is CDH1. My paternal grandmother died of stomach cancer at age 45 and her father died of stomach cancer at a young age as well. This genetic mutation is very rare and only 1/3 of those suspected of having it test positive. For more information about CDH1you can visit http://www.nostomachforcancer.org or for more information about stomach cancer in general, including the story of someone else with Hereditary Diffuse Gastric Cancer who was diagnosed at age 20, listen to http://www.stupidcancer.org/show/308/
     My testing positive for this genetic mutation led to other family members being tested. My father tested positive and subsequently had his stomach removed preemptively. This is the recommendation because it's so difficult to catch stomach cancer at an early stage. Hereditary Diffuse Gastric Cancer is especially hard to catch because it grows in the lining of your stomach, making it impossible to see on a PET or CT scan and very easy to miss even when biopsies are taken during an endoscopy.  Three other relatives have also tested positive and are weighing their options and three more now need to be tested.

    So that's my "How", which brings us to the "Why me?"
    Since being diagnosed and finding out there was a genetic cause, I've struggled not only with concern for my family, but also with the "Why me". I've read about other families with a history of stomach cancer that is devastating. People write about having watched five or six family members succumb to this disease before the mutation was identified and testing became available.  Although devastating for these families, their history put them on somebody's radar or increased their personal research, so when testing became available, they were ready. But in my family, only two cases of stomach cancer and the fact that my dad was alive and well never raised questions or concerns, even though I've seen multiple GI specialists in my life due to various digestive problems.
     Now I would never wish that one or more of my family members would have been cursed with this disease even if it had led to an earlier diagnosis or preemptive surgery for me. (In my imagination, we have some long lost relatives, who I don't know and I don't care about, who contact us to let us know we're at risk and to go for testing.) But it still brings up, "Why me?" Why am I the one to have this disease? Why am I the reason we discovered as a family that we were at risk? Why didn't I have the opportunity for preventive surgery? Why didn't we question our history and talk to a geneticist two years ago? Why me?

     Most people don't know how they got cancer. Although personally I think that the next few years will provide more and more people with a genetic explanation for their cancer, right now most folks are still left questioning power lines and water bottles. And as for the "why", maybe there is no answer.

Stupid Stomach Cancer on Stupid Cancer Blogtalk Radio

On Monday, May 19th, 2014 T 8ET, Stupid Cancer will broadcast about Stupid Stomach Cancer.

"There are 22,000 diagnoses of Stomach Cancer each year, which a significant percentage increasing in young adults. Join is as we welcome Debbie Zelman (Founder, Debbie's Dream Foundation) and AYA stomach cancer survivor Jess Mac for an initiative conversation about this oft undiscussed disease." -Stupid Cancer http://www.blogtalkradio.com/stupidcancershow/2014/05/20/stupid-stomach-cancer#.U3czR1Q-NdQ.twitter

I am really looking forward to this and have set all the reminders on my phone and around my house so I won't miss it.

Along the same line, Stupid Cancer retweeted and posted my blog to Facebook. This may be what led many of you here. Then, yesterday, I came home from infusion, tired and nauseous, to see that Matthew Zachery the CEO of Stupid Cancer tweeted me to say they'd love to have me as a guest on their radio show! I almost peed my pants! I'm so excited about this possibility! 

To Buy or Not to Buy, That is the Question...

My husband (who would like to be referred to as Matt Damon for the purpose of anonymity) has recently been talking about replacing my car with a new one. My car is eight years old and has a lot of miles on it, but we have had almost no problems with it. Matt Damon's reasoning is that we drive two hours every other week for treatment and should have something more reliable and comfortable. His car, by the way, is much newer, but we never take that because he doesn't like driving it in the city and he's afraid I might puke all over it after treatment (which has NEVER happened in the almost NINE MONTHS we have been doing this).

I do understand that if we broke down on the way to or from treatment it would be majorly inconvenient. However, I can't help but perseverate about my prognosis. What if we buy a new car and in a few months I'm not driving at all? Or what if I'm gone? Matt Damon says he could just trade in both vehicles for a new one, no big deal. But it still seems irresponsible and like a waste of money to me. For heavens sake, I returned a skirt I'd bought just before my diagnosis because once I heard the prognosis I thought, "Well I won't be needing new clothes anymore". A friend of mine who is a cancer survivor told me she thought twice about buying the expensive shampoo after being diagnosed, thinking she might not be around to use the whole bottle.

Long term planning of any sort has really become a problem. Some friends we have vacationed with before, recently suggested taking an international trip to an island next February (it's mid-May now). Although it sounds wonderful, how can we plan that far in advance? I'm having trouble committing to things even a month in advance! And what about traveling internationally? I'd have about a zillion questions for my doctors before doing that. What if there was a complication and I needed to visit a hospital over seas? Do I really want to go to a hospital on a small tropical island? Could they medevac me back home? I'm sure that is not as exciting as it seems on TV. I mean, George Clooney and Noah Wyle aren't going to meet me on the roof, right?

I'm sure other folks with late stage cancer have the same thoughts. Comments, questions, advice... I really could use some.

Disclaimer: I am not really married to Matt Damon. However, my boy's wicked smaht.

Two Interesting Articles

I found Tumbler tonight. I know, I'm a bit behind the times; I only got a Net Flicks account last week. Anyhow, Tumbler led me to this article from the NY Times, and I thought I'd share. Although a total gastrectomy is not in the cards for me right now, one family member has had the surgery preemptively and others are facing it soon, thanks to this great CDH1 gene we share.

It made me think of my all inclusive resort vacation just before my diagnosis. There was all this amazing gourmet food and chefs available to cater to my every whim, yet I could only eat a few bites of each meal due to early satiation, one of the few symptoms I experienced before being diagnosed with stage IV stomach cancer.
NY Times: I Won't Have The Stomach for This

A second article/opinion was written to follow up.
NY Times: Diagnosis of a Cancer:two Opinions

Comfort in, Dump Out

Although this has been a minimal problem for me, I can see it looming on the horizon and am sure it is a big problem for many patients and their immediate families. Below is a diagram depicting the "Comfort in, Dump out" theory. The idea is that the patient is at the center and is surrounded by concentric circles. Her immediate family members or supports are in the next closest ring. As the circle expand, so do the relationships. I, as the patient, can dump as much frustration and pain "out wards" as I want. People in the outer circles can also dump OUTWARDS; they can only provide comfort INWARDS. So my husband can say to my best friend, "I can't bear to see her like this." But a colleague can't say to my husband, "I can't bear to see her like this."

 Here is a diagram to illustrate this idea.

This idea is not my own. It was forwarded to me from two friends who learned about it from the following blog and LA Times article.

How Not to Say the Wrong Thing (LA Times)
How To Respond to a Friend in Crisis (Shasta's Friendship Blog)

People want to help, they want to be supportive. Many have no idea what to say, others have no clue that what they think is supportive, really isn't.  I really like that this diagram and these articles include immediate family, they too need support. I'd like to restate something I said in an earlier post, if you must say something, "I'm sorry you have cancer" is a good one. Likewise, "I'm sorry your wife, husband, mother, sister, girlfriend, whoever, has cancer" will do. Either of these can be followed with "Here's a gift card for a day of housecleaning from a service" or "Here's a gift card for groceries to be delivered".

On a more personal note, my most recent ct scan this week showed no change. Everything is stable. Considering that my last scan showed my lymph nodes were as small as they can get and since they can't measure the diffuse cancer in the lining of my stomach, this really is the best news we could get. For now, treatment continues status quo.