It’s been 11 weeks since I’ve been out of surgery, and this week has been tough. I had a lot of stomach cramps that would last anywhere from 40 minutes to 90 minutes and the return of the dreaded “cat and hair ball” syndrome during certain meals. After making some gains in the weight department last week, this week I ended up losing about 5 and was down to 160 lbs at my lowest. My GI told me that I shouldn’t worry unless my BMI drops below 20, I’m at 22 right now which gets him a little worried about my absorption, but he told me not to call him unless I get close to 145 lbs or have some other complications. Dr. D did recommend that I revisit a nutritionist because the diet Stanford gave me works great for gastric bypass patients (closest diet plan they had for a total gastrectomy patient) who are trying to keep weight off, but not the best for people like me who are trying to keep weight on. He recommends I find a carbohydrate that will stay down. Since bread/croissants/pastries are out of the picture for now (my theory is it’s too dry and gets stuck in my esophagus), it looks like I’ll be sticking to pasta and potatoes for my carbohydrate needs. As far as pain management goes, I’ll be honest, I have not had a full 24 hours where I did not have some short period of pain since surgery. The pain varies from cramps, nausea, “cat and hairball”, dumping, or some combination of the above. Some days are worse than others and I manage with a little vicodin if it is bad enough, but those episodes are rare. The worst pain are still the stomach cramps that can last for hours as I am trying to go to sleep. I try to reserve my supply of pain medication for the worst nights so I can sleep. Kate thinks it’s my intestines trying to digest everything I’ve been eating all day. I do, however, keep Zofran at my side because nausea strikes fast and often. I keep some in my bag, in my car and at work just in case. The pills I have are 4mg, dissolve under the tongue, tastes like cherry and works like a miracle. Getting through the tough times, for me, is taking whatever silver lining there is through the process to get you through the toughest cramps. It sounds super cheesy, but it’s true, there usually is some kind of silver lining in the process to give you a little extra motivation… and this week it came in the sweetest of ways.
I discovered this week, in my good moments, my sensitivity to sugars has improved a lot! I’ve been able to enjoy peanut M&M’s (which are the best M&M’s anyway), some juice, a little tiramisu, and even had two mini cupcakes with no issues! I know what you are thinking… “did the sugar cause all the pain?” All of my symptoms of dumping syndrome happen almost immediately after I eat. When something gets “stuck” in my esophagus it’s usually in the process of biting and chewing. Stomach cramps I can’t quite figure it out, but I ate a few M&M’s and waited for a couple hours without any issue. I started with 5 and then worked my way to 10, but I haven’t pushed more than 10 in one sitting. Kate will tell you that one of the most discouraging things for her through this whole process were the days when she would watch me hugging a toilet for hours at a time spitting up everything I just ate. On the flip side, the sheer joy she experiences when I am able to keep down something I love eating is beyond bliss! I honestly believe that she now enjoys watching me eat and keep something down as much as I love eating it myself. After eating some M&M’s and waiting for any repercussions, I immediately called Kate to tell of my victorious conquest. I came home after work that night to a Costco sized bag of of M&M’s and a private stash next to my regimen of vitamins. Seeing silver linings and having a spouse that will exploit that silver lining for all it’s worth is far better than the M&M’s itself. Seeing the visible glow on Kate’s face when I’m eating something delicious is priceless.
The signs of life returning back to normal are slowly piecing together. I had the honor this week of officiating a wedding for one of Kate’s co-workers. It was my first wedding since I went into surgery and I’m just glad I got through it standing up! I made sure I had a lot of water and snacks to get through the service, but the service went on without a hitch and we spent the night celebrating with our friends. My favorite part of the weekend happened after rehearsal. Sometimes as pastor of a wedding, you never quite know if you are invited to the rehearsal dinner, but I was craving a lamb ragu from the winner of “best Italian” on our “Farewell Stomach Tour” so Kate and I decided to go on a spontaneous detour down to Pacific Grove. Evangeline was spending the night at her grandparent’s house which meant that Kate and I could linger, graze and enjoy each other’s company. After a rough week, I think it was good for us.
The main course was a braised lamb ragu and thick handcut pasta which was as delicious as it was easy to digest. Kate went with the Gorgonzola gnocchi which were awesome, but we both agreed, the ragu is king.
We wrapped up the night with a little bit of a risk: tiramisu. Hoping I was not going to ruin our perfect date up to this point, I took a couple bites, waited, enjoyed my espresso with a twist of lemon, and to my pleasant surprise, no issues! Tiramisu, you are back on the menu my friend!
The rest of my Memorial Day weekend was simply enjoying what is worth so many people like my brother defending: family, friends, life, love and the freedom to enjoy all of the above. So what started as a rough week, ended pretty great and the good news is, it’s another week of recovery under my belt.
Graces,
Steve
Steve Dang 
Hey Steve! I think you can’t have bread due to the ‘simple’ sugar. My dietitian told me pre-op thats white carbs are not as good because it is a ‘simple’ sugar – although you can eat m and m guessing thats because of the protein peanut inside???? She said whole breads like pumperknickle are better to try. Take what you can get. I am both worried and excited for real food. Probably 4-5 more days but not sure. Just basing on you guys. Okay, I’m tired! Talk soon.
Hey Steve!
Keep up the positive attitude! I know it’s hard to do when you’re hugging the toilet, spitting up another meal. But it’s the good mental strength that will get you through the tough, long recovery. You’ve got a great support network and attitude. Keep it up. 🙂 We’re here for you.
To Rachel’s comment, I eat peanut butter M&Ms. I had trouble with peanuts early on…got stuck a lot. So the smooth texture of peanut butter really worked for me. Plus I’ve never been a fan of peanuts ruining my chocolate. Ha! In the beginning, my surgeon said a calorie is a calorie. Longer term, it’s a matter of putting all healthy food into your body…food with iron, protein, vitamins, etc. Plus supplements.
Stay strong you two! You rock for getting this far. It’s a long journey. It just makes us all appreciate the small, but perfect foods. When it all tastes so good and stays down, you just appreciate all that much more.
Thanks Marne, I can fully understand now the journey you guys are on and look forward to the same progess!!
Steve,
Thanks for this post and several of your earlier ones as well. I have found them helpful and encouraging, though I’m sorry you are having difficulty keeping things down. At age 65, I had my TG just two days before yours. This followed a partial gastrectomy on Feb. 3, 2014. After 4 weeks in the hospital with my remaining stomach refusing to function, I underwent the second surgery. After recovering from surgery for a few weeks, I began a second round of chemo (I had a pre-surgery round in the fall) on May 8. Overall, I think I am doing reasonable well. Thankfully, I am able to tolerate most foods–even enjoying a bit of ice cream every night now. My weight, coming down from 195 going into my first surgery, is holding around 160. I try to supplement meals most days with a Boost or a soy-based high protein shake that includes a good scoop of peanut butter and a scoop of ice-cream. I have had some of cramping you describe, but not apparently as frequently. Part of my digestive track symptoms now seem as much related to the destructive nature of chemo as to the surgery.
My most frustrating issue has been the loss of energy. I am very weak. Work in any physical way is still out of the question. A short walk is exhausting. I’m still wondering about the cause of this as I read of your activity (and of others on this website). Maybe this will improve once the chemo is finished. I have one more treatment this week and a final one in two weeks.
At any rate, thanks for your blogging posts! And for the great suggestion of the peanut M & M’s–they are now on my shopping list! Maybe I’ll have them over ice-cream!
All the very best to you!
Don