Recovery Trial & Error

So, I had a few crummy days, but today was not one of them. I’m going off of my theories and those of a fellow gastrectomy patient I’ve connected with, Aimee. She’s 8 months post surgery and able to offer lots of great advice. She believes (and I now am also a believer) that protein input during the day is critical.

The day I puked was a day I didn’t eat enough and what I did eat was mostly carbs. Oatmeal claims to have 5 grams of protein, but before I said goodbye to my stomach, oatmeal always left me starving early in the morning.

I think the trouble now is that I don’t know when I’m hungry. Think of everything you’ve been taught to listen to your body, only eat when you’re hungry and stop eating when you’re full….kinda all messed up now. Apparently when I get that ’empty’ feeling that now replaces hunger, it’s too late because I just can’t shovel it down fast enough to catch up. Also, hydration is an issue. And being that it’s 103 today, I’ve got weather going against me. So, if I’m not consuming food, I’m drinking water. Pretty much, I have to eat 24/7. When I do that, I’m actually able to get in enough calories and then I don’t very nauseous. And then to I have the energy to walk.

My theory is that there are 4 keys:
1. Protein-rich continuous eating
2. Hydration
3. Walking
4. Nap when you’re tired

We’ll see if my theory continues to hold true. I was able to do that today and felt great.

I’m getting 4 cans of “formula” now just overnight while I sleep. I’m holding steady on my weight currently. We’ll see if I can eat more so I can drop another can. Probably the most obnoxious thing right now with sleep is that stupid j-tube. It’s the only thing that hurts, giving me random shooting pains. I know it keeps you nourished, but when you’re sitting and getting random pains, you just want it out. And since weight loss is a concern I have, hopefully I can increase my calories everyday enough to hold my weight and quickly say goodbye to “the last tube” in my body. I was able to eat a slice of pizza today, along with a dinner. So, if I can keep that up, I should be in good shape.

One last item to note, I get grumpy by the end of the night. I do find that my body starts shutting down much harder than ever before now, So when it’s time for the kiddos to go to bed, mommy too is ready to wind down. Gives me worries about how I’ll be able to keep up when I return to work. Usually sleep deprivation allowed me to get it all done. I know it’ll all work out, but I will still think about it.

I’m tired, so goodnight again. Congrats for reading this far!

A few steps forward, a scooch backwards

Of course after posting I was doing well, that caused me to have some off days. Trying to figure out the common denominator here. Since eggo with peanut butter went well 2 days ago, I had just the eggo with peanut butter. Bad idea…sugar crash away. Maybe the key is protein with it because the only difference was I didn’t take the time to cook bacon. Maybe I’ll be brave another day to retry that combination. So, that day was just full of nausea. Started out bad and couldn’t get totally ahead of it.

So today, went with the oatmeal. Food went down fine, but my body got a little pissed off at me for not feeding it enough today (I will assume protein is the must have here). I’m still on the tube feedings, so no huge disaster or anything. Cut it down to 4 cans. I had gained weight the other morning, but pretty sure I lost that today. We’ll check during my morning weight check.

And since this is a “bummer” post, I’ll say I’m a terrible sleeper. Before surgery, I sometimes had that crazy restless legs thing going on when I try to fall asleep. It’s been back since my surgery. It’s almost like my legs are upset at me for letting the muscle dwindle away while I don’t run for a while. Maybe I should remind them it’s 100 degrees out with 99% humidity and I’m two weeks after major surgery. For some reason I don’t think they’ll listen. And sleep isn’t stellar with my j-tube in and a healing tummy. It’s like pregnancy sleeping, and that was never cool either.

So, time to put my game face on. I’ll be all cliché and say “Bring it!” Try to focus on a protein with breakfast and see how it goes. Maybe it was the coffee….I’ll gladly add some of that back in 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 (nostomachforcancer.org) 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.

It’s Only a Flesh Wound and Other Random Thoughts Today

In two days, it will have been two weeks since my surgery. Knock on wood, but I actually feel really really good. After talking with other people who had gastrectomies and reading blogs, we had mentally prepared for me to be pretty laid up in bed this whole time. I’m not saying I’m up for a marathon right now, but with a lot of resting, I can take care of myself and partake in the kids’ bedtime routine. No nausea. Just officially the slowest eater ever. I get the vibe that sugars will be bad, but I’ve basically been able to eat small portions of all the yummy meals everyone has brought over. Far beyond our initial expectations. I’d like to say I must be a rock star, but I will credit improved medicine, the best surgeon, excellent pain management post-op through the epidural, my physical fitness level going in, and the power of half this community praying for me. I know I am in His hands and my healing must be going this well for a reason.

My random list of the night…
1. The j-tube, aka feeding tube, still creeps me out a little. It’s like an open flesh wound in the body. A random tube hanging out of my tummy. But, I’m also so glad to have it keeping my weight up right now, providing high protein, healing nutrition.
2. Added surgery bonus – my belly button never set back right after c-section 2. My gastrectomy somehow, someway fixed my belly button! Score one for me!
3. My abs can’t catch a break – been here before after baby 1, then baby 2 and now the mine field my tummy is right now. Alas, I know it’ll return, and this surgery was probably the easiest on my abs.
4. Cheez-its – I still love them. Glad that’s on my list of can-do foods!
5. Lazy feeling – take the kids to preschool and then take my nap. Makes me feel lazy. Got to keep reminding myself this is normal. (Yes, I have trouble slowing down.)
6. Can I still call it my tummy? – a tummy is a reference somewhat to your stomach. Is it a misnomer to refer to your midsection as your tummy after the surgery? Or is it ok because we also say babies grow in mommy’s tummies and that’s not entirely accurate either.
7. Did I pass this crappy gene onto my great kiddos? – Not sure, but I do trust that the medicine in 20 years will be far superior and my kids will say it’s insane I had my stomach removed to beat it “in my day”
8. Why is that blood thinner shot in my arm a bigger bruise than anything on my tummy? – so immediately following surgery, they shot blood thinner into my arm. Then the next day, they shot it into my gut. ( Far less bruising in the gut, but still a slight bruise at the injection site. Still painful.) So, one of the nurses made the mistake of telling me I have the right to refuse anything. After day 2 of blood thinners and fully aware post op there is a risk of blood clots, I refused the blood thinner shots.
9. My 4 year old likes to show everyone who brings over food mommy’s boo-boos. So, be fully prepared to see the mine field because he might make sure you see it.
10. Toddlers are funny – So when I “Kidify” my explanations to kids about what’s going on with mommy, a joke I made was that mommy’s drinking a baby bottle. The stuff going in the j-tube can best be described as formula. So the preschool teachers asked S how mommy was doing. Her response: “Haha! Mommy’s eating baby food.” Needless to say, the teachers were dying laughing. Of all the things we told the kids, that’s what she chose to repeat to her teachers.
11. Most people cook better than me – Tonight, we were treated to pork loin, mashed potatoes and the best green beans I’ve ever had. I might not be able to eat large portions, but everything is going down ok so far. Just some slight discomfort; I just try to heed to advice of others and chew really well.

Well, this is far too long. If you’ve read this far, wow! Have a good night.

Cheez-Its

So, based on what I’ve read for other post-gastrectomy patients, eating is a bit tough. I’ve been pleasantly surprised that it’s going fairly well. I’ve been really careful, eating small portions and chewing them down to mush before swallowing. It takes me kind of forever to eat, but it’s been pretty successful.

Ironically, cheez its go down the best so far. I get some discomfort with some foods while they go down, but not cheez its. It’s only mild discomfort and I can’t tell if it’s where the doctor connected my esophagus to my intestines or if it’s where my throat got irritated. I’m confident that’ll feel better over time.

I haven’t been brave enough to eat any sweets, but I did have 3 bites of an ice cream sandwich with no issues. Hopefully my theory of moderation will continue to make my transition to the stomachless life pretty good. I’m lucky, no real nausea now. The only problem is my energy level. I need a lot more energy to keep up with my kiddos and it’s just not there right now. Guess I’ll just be napping for now.

Got to go Home!!

So, I was trying to get home Friday night after making sure some soft foods agreed with me for breakfast and lunch. But unfortunately, I felt nauseous all day Friday from when I woke up until I went to bed. They gave me zofran, but that did nada. The only thing that worked was sleep to feel mildly better.

So I had gotten my hopes up during the day Friday, but it just wasn’t going to happen. I figured out the problem late Friday night when they gave me the pain meds that mix acetaminophen with hydrocodone through my feeding tube. Immediately when they gave it to me, I start heaving. Unpleasant, to say the least! But woke up Saturday morning feeling perfectly fine. Had no more hydrocodone and felt fine all day.

Managed to get down 1 scrambled egg, a12oz Gatorade G2, then Cheerios with almond milk. No nausea, felt fine. A bit tough to get the eggs down mentally, but everything feels fine with my new plumbing design. Ironically, the most pain I have eating appears to be from my sore throat from when they had the intubation tube and the endoscope down my throat.

Big going home exit:

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Tonight, got to figure out how to run my feeding tube at home, but most importantly got to lay down in bed with my children and read them their bedtime stories. Today has been an exhausting day, for sure. But one thing about little kids, they’re too much fun to hang around with to feel sorry about yourself and this surgery. If anything, your recovery goes better because you’ve got more to do than watch MD Anderson’s tv and walk the hall in the surgery waiting area one more time. At least now my walks can be at home or around the block.

And on a funny note, while face timing the kids during their bath the other night, H farted so loud I could hear it through FaceTime. I just died laughing and then I was in so much pain from all the laughing. But it was hilarious. For as much emphasis as these doctors have about gas, it seemed a fitting addition to some post gastrectomy humor.

Goodnight. I will be enjoying a nice comfortable sleep in my own bed tonight, uninterrupted by any nurses, blood draws, you name it. It’s going to be awesome!

Today marks day 7 in the hospital

I will entitle this photo washed bed head hair
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I’ve taken it upon myself to change into real clothes for the remainder of my stay here. Get my “pee tube” out today, so from now on I get to be a big girl and go to the potty all by myself. Once they take that thing out, goal 1 is a full shower. Go team! Reducing tubes hooked into my body one by one.

Pain is doing pretty well with Motrin every 8 hours. And I can get Tylenol hopped up with some narcotic as needed upon request. Only had that last night at 10. I really don’t like when they pump cold water into my feeding tube around the medicine because it makes all of me cold and is a bit uncomfortable.

I continue clear liquids today, but slowly increasing amounts. Just trying to keep up with my walking and sleep. The good thing about major surgery is that your body is so tired that you now have a lot of good excuses to nap and feel fine using all those chances to snooze. Did 3 walks so far today and am now tired again. Sleep zone/veg in front of horrible daytime programming.

Day 6 in the hospital

Lots going on today. Got my second IV tube removed and we removed the epidural this afternoon. Definitely need some extra pain meds now that my midsection isn’t being constantly numbed.

The morning did start with my mom and I leaning my head over the shower drain and washing my hair. So, score one for team Marne….hair and makeup. Also attended j-tube (feeding tune) 101. Hubbie and mom attended also. Pretty simple stuff.

The kids came up this afternoon and cheered up the entire hospital. They’re allowed to push my IV stand. It was quite possibly the longest walk I’ve gone on, so long the nurse mentioned they wondered where we had gone. We visited “the park” and then went up to the top floor observation deck. I took a short snooze and then was happy to see my friends Janet and Robert who were in town from Australia!!

So, just working on how to control my pain now through the feeding tube instead of the IV. And I get to sip clear liquids now, a max of 60 mL per hour. Yes, that’s tiny.

That’s all for now. Goodnight.