Pathology Report

My brother got his pathology report back, and he had 23 foci of adenocarcinoma (I had 4 foci). Since he’s older, this is exactly what you’d expect. Even though I knew his results would be like that, I still find this whole thing a bit crazy. You have the CDH1 mutation, go through this crazy surgery to remove your entire stomach and then the surgeon assured us no one with our mutation came back without something in their path reports. Pretty wild science. Our ticking time bomb stomachs are now our past.

I am continuing to do really well with my eating and my weight. I’m holding onto my recent weight gain and being able to get back to running regularly. I’m feeling strong enough regularly to be motivated to train. I’m keeping up my energy and now that my portion size is so nice, I’m much better able to stay hydrated. I’m able to drink my protein shake as well in between meals again without feeling like they’re so harsh on my gut.

For breakfast, my current favorite is a mini bagel with a poached egg, shredded cheese and some butter. Tastes so delicious. And it doesn’t seem to take me too long to eat it either…though I’ve adapted so well to eating slowly that I just might not realize that my “quick” is not very fast.

Hooray for being stomachless and cancer free!

The start of my brother’s recovery journey

So my brother had his gastrectomy a week and a half ago. Same surgeon, same hospital. Surgery went well, the hardest part is over! Now he’s gotten back home and is starting his foray into life without a stomach.

It’s interesting to compare notes since it seems everyone’s bodies react differently to the gastrectomy surgery. I never had any nausea directly related with the feeding tube running, but my brother said he seems to. Whereas I was hooked up to the feeding tube 24/7 the first week I was home from the hospital, he’s not been. Instead they’re cycling him on at night only to help him try to eat more during the day. But he said he feels nauseous/cruddy whenever the feeding tube starts up. The surgeon is having him try to start at 20mL/hr first and increase every 10 minutes to see if that helps. He thought it might have helped out somewhat.

He was able to enjoy half a ham and cheese sandwich, is digging some cheez-its, eggs and yogurt. He did throw up ( like real throw-up, not spit up) his last night in the hospital. He’s thinking he ate too much then. Post gastrectomy, it’s hard to pinpoint exactly what causes problems because so much has changed! It’s a long journey and this is his beginning to his “new normal”. But he’s strong and I know he’ll do just fine. We’ll just keep comparing notes!!

I’ll continue to post about any differences he has from me. For my personal goals lately, I’m really trying to stay healthy and eat more quality foods. Since my food volume has gone up substantially, the focus can be on quality rather than just high calorie with small volume. I’ve been able to hold my weight steady at 110-111 even with my half marathon.

Also I want to do better at keeping up with my running. Luckily I’m signed up for a 10K in February. And so goes the saying, “you race to train.” Motivating myself to run tomorrow morning by meeting up with a friend!!

Stay strong and have a great evening!

My Brother’s Surgery Date

Deja vu … Now I get to see a total prophylactic gastrectomy from the supporting family member perspective. So the whole family is back in the same surgery waiting area as they were for me, except this time I’m waiting and my brother’s surgery is in progress. We’ve been discussing how the process around the whole surgery isn’t as daunting now that I’ve gone through it and we all know what to expect. Though I think waiting while the surgery is going on is harder than being asleep during the surgery.

His stomach was removed around 2:50, so they’re waiting to confirm all the stomach tissue is removed before they put his digestive track back together in its new form. We got an update at 4 that the diagnostic work finished, so they should be putting him back together. Estimated total surgery time was 5ish hours (mine took 6 because I so desperately wanted a small incision). Like brother, like sister now. We will have matching scars to show off in no time!!

I love my brother. I wish my brother didn’t have to go through this same surgery. But I know my surgeon is the best. I know both of us will no longer die from stomach cancer; we will both attend our childrens’ high school and college graduations and weddings. This is our bump in the road to continuing on our beautiful lives.

I’ve successfully tried some new foods lately:
A raw apple with the skin on (plus peanut butter)
Grapes with skin going better
Cooked tomatoes with the skins
A bit of lettuce on a salad
Steel cut oats with flax seed (Never realized how many good things were in flax seed) and I add two little creamers and a Splenda to it. So tasty!!
Red curry with rice from my favorite Thai place
Popcorn!! (I can eat a bunch!)

Foods still not worth my time:
The “healthy alternative” lettuce and chicken wrap at work. The quality of the tortilla is like eating rubber. It’s overstuffed with iceberg lettuce. And it just doesn’t taste good. Mark that off of my food list.
Rubbery green beans

A Bit of Anger

During my second return to running, I was jogging on the treadmill during my lunch hour. (Did I mention I’m a crazy runner? Somewhere during all the months spent marathon training, answering the phone while running became ‘normal’ to me.) My brother called and I asked him if he’d heard the results back on his genetic testing. Turns out, he came back positive as well. On paper, the odds are 50/50 to inherit this CDH1 gene mutation. But at this point, every descendent of my grandmother has inherited the mutation. A few expletives might’ve left my mouth at some point about this situation.

Anger is where I head to initially. This is where running is my therapy, my coping mechanism, my outlet, my method for mentally reconciling my life and all the crazy stuff that goes on in this world. When I’m upset, I make myself run faster until the only thing I can think about is breathing. When I’m not mad, running lets me float away in my thoughts. So my second run post gastrectomy from a pure running perspective was good because I pushed pace quite well.

I was supposed to be the only one to go through this crazy surgery, not both of us. We were supposed to move on with life as a family now that my surgery is over. That’s how it should’ve been. We needed to be done with this whole ordeal for the next 20 years until I have to get my kids tested. But this gene is the gift that keeps on giving; it’s just a gift you don’t want. It reminds me of reading The Lottery. This gene mutation is now responsible for me losing my dad at 16, losing my aunt in my 20s, then my surgery,now my brother and later our kids.

But I remind myself, at least I have an option. At least I can test for the gene. My kids won’t lose their mommy when they’re 16. They’ll have me around for a long time. So, for as easy as it is to spiral down the anger tunnel, I will keep my head in a positive place.

So we’ll be there supporting my brother as he starts his journey through a total prophylactic gastrectomy as well. Apparently my family was never meant to be anything other than skinny minnies.

Have a good night. Keep your head in a positive place. Enjoy all the good this world has to offer.

Our Decision

Unlike cancer patients who feel sick, find out they have cancer and quickly roll into a whirlwind of treatments, genetic testing is a whole other world. For us, coming to this decision was a multiple year process. There was one cancelled genetic counseling consult 4 years ago. There had been many nights googling CDH1 and linitisplastica. So my blog is a bit backwards, but here’s the road we took to genetic testing, a positive result & a prophylactic (fancy medical term for preventive) total gastrectomy (fancy medical term for cut out entire stomach).

At 16, I lost my dad to stomach cancer after a 3 year brave battle against it (He was 53). When he was diagnosed (after symptoms of being tired all the time and finding out he had low iron counts), he came back stage 4. He was given a year to live. He beat his numbers and lived 3 years. He passed away about a year after his cousin had passed away of the same thing. His mom, my grandmother, died of the same thing when I was 3 (she was 69). And then in 2009, my aunt died of complications related to the same stomach cancer (She was about 55).

My aunt is the one who told us about the gene, gave me the referral and had written us a note about specifically which nucleotide to test for our mutation. I was still in my 20s and had only had our first baby. Add here the cancelled genetic counseling appointment. Add another several years of on and off discussions about the gene. Since my family history didn’t seem to have a stage 4 onset until 50s, it’s a gamble that I’d be ok. But my aunt would always point out we had a great aunt who died of stomach cancer at 31. She was the wildcard. Plus, I’m healthy and in good shape from marathon running. You think it should count for something (apparently not much).

I just finally decided I was ready in November of 2012. We had our second kiddo, and I just wanted to get this over with. My overly rational husband’s comment, “If I were you, I’d do the testing. If it came back positive, I’d take care of it and be done with this whole thing.” (You can tell, we’ve talked about this a lot over the years.) I was told as a female, the stats are 79% chance of cancer with average onset from 31-38. Ok, let’s do this. So after New Years (even though I was hopeful I wouldn’t have it), my results were positive. Well, &$;!,@.

So for 6 years previous and 5 marathons, I’d always had a goal time of 3:30. Never did it for 4 marathons… times were 3:32, 3:36, 3:34 & 3:34. Cruel, I know. Maybe I’ve become an experienced runner, maybe it’s because I ran with a buddy the first half, maybe it was the cold weather or maybe it was that I knew it might be my last shot to PR. Whatever it was, in Jan 2013, I ran the Houston marathon in the cold rain with all negative splits (read…every 5k split was even to or faster then the previous one) and absolutely crushed my goal time. I finished in 3:21. I had no clue how I was doing because my phone malfunctioned at the start & I was afraid like so many other marathons when you feel like you’re really keeping pace, you’re actually slowing down. I will never forget being 3 miles from the finish and seeing the clock and realizing I was actually going to do it! So if my marathon speed slows down post gastrectomy, at least I know I crushed my goal time once and for all. 🙂

After that, it was time to schedule surgery. It started out in April. Squeeze in work stuff; squeeze in a vacation and eat. It got delayed because the surgeon had a conflict. Now it was set for May. Delay was hard, but it actually gave me time to do all the things I wanted to do beforehand. Then the week of the surgery (and more of an emotional mess everyday), boom….sinus infection. Surgery delayed another 2 weeks. And that’ll where my blog had started. I was a little stress ball.

So, that’s how I got here. I’m not as sick as we had prepared for. Calories are definitely going to be my issue because I don’t have the weight to lose. Today was a good day. Tired with a long nap, but generally felt good. Hope tomorrow goes well also.

Relief – 2 weeks post surgery

Before my surgery, we had braced for the worst. We were prepared for me to be nauseous on and off for a few months and to have a major recovery. Now I sit here 2 weeks and one day post surgery, and we’re wondering how I’m doing so incredibly well. I’m heeding all the advice I’d read… Eat slow, chew everything to mush, don’t drink while eating, watch your sugars, etc.

To date, (other than my hydrocodone nausea day), I haven’t had nausea. People mentioned “dumping”…I somehow have also avoided that. I’m still being really careful, but somehow I feel just fine. My energy and strength is regaining everyday. I do take a nap everyday right now and have to sit down and just chill a lot more. But I’m up to doing laundry, running some errands, etc.

After all the fear and anxiety going into the surgery, it’s nice to be 2 weeks out and quickly healing. Just need to remember to take it easy and focus on eating.

When we mentioned my surgery to friends and coworkers, people are just shocked about this surgery. I got responses like: “How will you eat?”, “Can you live without a stomach?”, “You can’t afford to lose that much weight.”,”Will you have to be on a feeding tube forever?”, and my favorite “You just blew my mind!”

With so much unknown before this surgery, I’d like to mention you just start eating slow, small portions very frequently. Actually the diet they recommend is similar to healthy diet/life recommendations: eat 5-6 small meals that are healthy.

The reality is, not too crazy. You have your lifeline post surgery, your “j-tube”. In medical speak, it’s a tube feeding your ‘formula’ straight to your jujenum (think start of your small intestines). If you have trouble eating all your calorie needs for the day, no big deal. Just pop open a can and it keeps you fully nourished. But no, it’s not long term. You just wean yourself off of it over time, regularly monitoring your weight. As you get stronger and slowly eat more calories, you reduce how much you put in your feeding tube.

I think my biggest challenge going into this is my high metabolism and low weight. I was only able to gain 6-7 lbs going into this and I lost 5 in the hospital. I’ve never been overweight and have always maintained a 5 lb range with marathon running and my diet. The dietitians assumed I need 1500 calories/day, but I know I usually consume more like 2000 calories/day. So far, I’ve been able to hold my weight with the 1500 calories through the feeding tube and 500-1300 calories orally. And we’ll see if I do good enough to run the Houston half marathon in January since I did register for it already! (I’ll call that my optimism.)

So I’ll keep you posted how it goes. Not too bad so far. Am tired again, so will sign off with another Goodnight!

It’s Official

I got the pathology report on my stomach today, and mine came back with 4 foci of cancer. It’s considered stage 1 cancer. It reconfirms my (and our family) decision to pursue a prophylactic total gastrectomy.

Now, I know I will be around for my kids for a very long time. And I’d venture to guess, I’ll probably get the itch again to run another marathon ( or 2 or 3…). I also owe my friends a trip to Australia, as well as many other places I’d like to travel to. My recovery is just a minor slowdown in a great life to live.

Thanks to No Stomach For Cancer ( for sharing info and blogs from others like me leading up to this major surgery.

The physician’s assistant and dietician said I am recovering like a rockstar. Maybe all those crazy marathons I’ve run had more benefits than I even knew.