Praise on Repeat

Inspired by my chat with the beautiful sisters of BeetinGenes, I decided I would give an updated version of “what I eat”. Since I know that’s the topic that keeps you up at night.

I am coming up on 19 months post-op and I still keep a lot of same safe foods but have gotten a little bit more adventurous and my portions have also grown. I’ve also found some sweet treats that have made my day complete. These treats have also helped me add four pounds back to the scale.

Morning

As you’ve read, I struggle with liquids. My intestines like to wake up slowly and if I drink water or eat something right when I wake up, I get terrible nausea. But after talking with Rachael about how I simply have to get more hydration in, I started trying different things. Finally, I figured out that a cup of warm unsweetened tea is just what my intestines want.

First things first, I try to drink the entire mug of tea while I get ready for work. Honestly, most mornings I may only get 4 ounces down but that’s better than nothing. To each their own for brand and flavor but I am an Twining’s English Breakfast girl. If I decide to have more tea at night…mostly if I’m feeling rumbly or queasy after dinner, I will go for an herbal tea like the orange and cinnamon spice.

Also, bonus addition of the flowers since it was $1 rose Tuesday at Central Market.

My coffee routine has stayed the same. I do about a 1/4 cup coffee, 1 cup whole milk, and a splash of creamer. The only change I’ve made is to add two scoops of collagen. It adds a little kick of protein + (in my mind) helps my hair and nails. Which, if we are being honest, helps sustain my vanity.

Breakfast (and also pre-workout meals)

I know this isn’t proper form for a Seahorse but I really don’t eat my first meal until around 9:45AM or 10AM. The thought of eating makes me ill. I stick to my coffee and let the 19g of protein I’m getting from the milk + collagen sustain me.

When it is time to eat, I have three meals that I choose from. These are also the meals I eat if I’m about to do a heavy Peloton workout.

First up, oatmeal. I eat this around 4 days a week. I like either the Quaker’s “Lower Sugar” Maple & Brown Sugar or the Trader Joe’s Unsweetened. I also really like the Trader Joe’s Oats & Flax, but I was out so couldn’t include them for the picture…which may tell you how often I eat it.

I always add some sort of sliced or chopped nut + whichever fruit looked best at the market. Usually it is blueberry, banana, or raspberry. Dealer’s choice.

If I am at home and have a more leisure filled morning, I will make a link of chicken sausage and one of the Trader Joe’s hashbrowns. Y’all. Even if you have a stomach…go get some of these. They are DELICIOUS and like, $1.99 a pack. I will either add avocado to the top of the hashbrown or just with a little natural no sugar added ketchup.

Obviously not an influencer because I shouldn’t have taken this photo with portrait mode.
12 grams of protein total!

Finally, my tried and true. My go-to smoothie has been a fan favorite since before surgery. And by fan, I mean me. This smoothie is Rachael approved. I start with frozen blueberries, banana (pro tip: the consistency of the smoothie comes out better if the banana is also frozen), a scoop of protein powder, your milk of choice, your yogurt of choice. I use Bulgarian Yogurt mostly because it (1) has a long shelf life (2) high in protein (3) I like the packaging.

If I am going to have this before a workout, I will typically add peanut butter just for the extra calories and protein.

You might be thinking, “Kathryn, why do you use Fairlife in your smoothies and Promised Land in your coffee?”. And that’s a great question, really. I prefer the taste of Promised Land milk but it has become very hard to find. So, for things like my smoothie that hide the flavor, I go with Fairlife which is easier to find on the shelves and has just a wee bit more protein.

Shouldn’t have used portrait mode. But here’s a beautiful photo of my blueberries.
How sad does that banana look?

Snacks

Snacks are really so crucial to the day. I keep packages of cashews, almonds, and peanuts everywhere. I always have them in my purse and desk. I also have a snack container in my car that I fill up with individual servings of nuts so if I get hungry while running errands I always have something to lift my energy back up – safety first.

Other than nuts, my easiest snack is cheese. I love the single cheddar cheese snack bars by Trader Joe’s. I don’t have the original packaging since I like to organize my fridge like a Pinterest board but you get the idea. If I’m at home I will switch it up and maybe have a nice Gouda or the “Unexpected Cheddar”…again, by Trader Joe’s.

I pair my cheese with a couple pretzels and a couple grapes. I used to do some apple slices but after many months of protest, I have concluded that apples cause me more problems than they are worth. I still keep a couple on hand and if I’m having a good intestine day, I will risk it. Otherwise I stick to grapes. The cotton candy grapes are my favorite and I’m so glad to see them on the shelves again!

And, it’s not all the apples’ fault. Even though I peel them, I don’t think I chew them well enough…but still, some battles aren’t worth fighting.

Run don’t walk to try Cotton Candy grapes.

Another favorite of mine: cottage cheese and peaches. I never liked cottage cheese…until surgery. And now I can’t get enough of it. I’m looking forward to summer when we have fresh peaches again! I will do two halves and then about 3/4 a cup of cottage cheese. A full cup is a little too much + the peaches but I’m not giving up the extra half of peach for more cottage cheese.

This is definitely a snack I can only eat at night, but I love eating a pitted date with peanut butter. I used to eat this for breakfast pre-surgery, but after discussing it with Rachael we felt like that might be too much sugar too early in the morning. So now I eat them at night when I have a full day’s worth of protein on my intestines or before a workout in the evenings.

Ok, this one might seem weird but one thing I CRAVE is salad. But, lettuce is a lot of wasted space in the intestines. So I make a “salad” with artichoke hearts, hearts of palm, and feta cheese (have to have some kind of protein). Some days I’ll get fancy and just do the artichoke hearts and feta and throw them in the oven for a nice little roast.

Total of 8 grams of protein!

As always, my Fairlife protein drinks remain a steadfast staple in the pantry. Right now, I’m on a Salted Caramel kick. I drink one of these whenever I’m running late (anywhere, always), during a workout, and on those days where solids just feel like too much work. Major heart eyes at this little beverage.

This last one is new to the rotation. One of those things I picked up while strolling the aisles at Target. So far, I’m a fan. This is my second box so I feel confident that it will stay on the roster. I usually eat this at night. If I have eaten a particularly early dinner and am still a little “hungry” before bed, I will have a very small bowl with just a tiny bit of Fairlife milk and some sliced almonds.

Lunch/ Dinner

If I am working out of the office, I usually get take out for lunch. It ranges from a sandwich (I don’t eat the bread), grilled chicken from Chick-Fil-A, chicken/tofu pad thai…also a BIG lover of fajitas. Serving portions are usually huge so it always makes at least two meals and it’s just like the perfect dish – protein and lots of flavor!

If I am at home, I usually eat the same thing for lunch and dinner. I browse Pinterest and find a new recipe and will make it until I am absolutely sick of it…and then wait a few weeks and then make it again. I can share some of those recipes if anyone is interested but this post is already so long I feel like I need to wrap it up soon.

Right now, my dish of choice is inspired by that viral Tik Tok for second-day-salmon. While I don’t Tik Tok, I saw the video once it made it’s way to Insta Reels and I was sold. So, salmon, rice, and veggies. I heat it up with olive oil, soy sauce, and sesame seeds and then once it’s good and warm I add a little tangy spicy mayo. YUM! It makes 2-3 meals.

If I am feeling lazy, I will heat up this dish from Trader Joe’s. Some days I will also make up some noodles…but most of the time I just eat the sauce and call it a day. I will eat half and then set it aside and then eat the rest about 90 minutes later.

Another lazy meal is heating up either some lentils or beans. I will pair these with a small portion of rice. Maybe even add some cheese or sour cream to the pinto beans. Easy peasy.

DESSERT (all caps because I am shouting)

I am most grateful that I can now tolerate some (real) sweets. Below are my favorite treats. Other than the Outshine popsicles, I stick to about 8 grams added sugar as my max. I keep them all in the house and each night get a different treat. Sometimes, if I split my dinner into two or three portions…I can have more dessert, too!

Look at those gorgeous things!

And now…for my favorite thing ever. These little cookies make life so much better. I can only have one and it’s usually what I choose for my dessert and I savor it in as many bites as possible. At 9 grams added sugar these little guys have made both my heart and hips full.

Before you go!

Let me talk about two more things.

First, saltine crackers. I know, I know. Seems so simple. But they are a game changer for me at night. Sometimes bile happens. And on those nights if raising up to 90 degrees doesn’t help, I shuffle to my container of saltines (I keep mine in the bathroom for convenience) and pull one cracker out and shuffle back to bed. It works like a charm.

Lastly, let’s talk about water. Polly, Taylor, and I touched on this in our chat but I wanted to flush it (pun, for sure, intended) out a little more. Most Seahorses have to be very diligent about separating their food and water by 30 minutes. That’s what’s recommended and definitely what I stuck to down to the minute for a long time. But, recently, I have started getting a little wild.

I have found that *for me* plain water tends to go down better if it is accompanied with food. So particularly when I eat my lunch and dinner, I split my meals even smaller than usual so I can drink 2-6 ounces with my meals. It is working for me and hasn’t caused any issues. Always follow Rachael’s rules (or your nutritionist), but when we discussed it Rachael told me as long as it was working for me then to keep doing it. Especially since my weight has stayed steady.

I stick to the higher pH level waters. Most recently I added this Core water to the list and it is so smooth. I start drinking it with my dinner and then try to get through half a bottle from dinner to bedtime. Some days I can do more…other days I do my best and don’t even get half way.

Looking back from where I was even four months ago, it is amazing how much the body heals. I know I have emphasized the struggle here and it’s real. But, the victories are also real and they are so much easier to forget.

The first shower after surgery, the first liquid, the first solid food.

That first little bit of chicken broth two days after surgery was savory and warm and it bubbled a little as it went down. It took me about twenty minutes to drink such a tiny cup.

My first solid on day five was eggs and I was so excited. I only took about three bites, but I did it.

Such a flattering photo of me, I know.

And now almost nineteen months later I am eating full meals, having dessert, drinking water (as much as possible) and just living life (the best I can). It’s easy to forget the victories because there are a lot of challenges and I get frustrated by what I can’t do instead of focusing on how far I’ve come.

And…you guessed it. The same goes for with God. Sometimes I get so frustrated with the things He has not given me that I forget how far He’s brought me and all He has given me along the way.

On my refrigerator I have Romans 5:1-5 written out:

 Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. 

And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

I need this verse every time I open the fridge to get another snack not because I’m so great and holy but because I’m so awful and unholy. With my personality and leaning towards worry, I need a reminder multiple times throughout the day that my faith in Jesus makes me at peace with God.

And because of that peace I know that God works all things for good and that the suffering, pain, and frustrations all have a reason. They all have a purpose. And it all leads to hope. If this journey is where He is asking me to meet Him, then there is no place I’d rather be.

(Even though I complain. )

So I’m gonna lay my world down

Here at Your feet

Look to the Heavens

For all I need

I’m gonna sing my heart out

Praise on repeat

To the God who’s never given up on me

Hillsong UNITED, “On Repeat”

Daily Provision

Hi. 

It’s been a while.

To be honest, I didn’t know if I’d ever make another post. At some point people get weary hearing about your illness, you know? I never want to be *that* person.

While I obsess over what I eat and drink and the new little oddities that life without a stomach has brought me…we all have our own crosses to carry and this just happens to be mine. I want to start by saying I genuinely appreciate those of you who care enough to read and reach out. It’s very humbling. 

So…here we are. I am quickly approaching 18 months post-op. Let’s dig in, shall we? 

At the end of 2021, I went for my one year check up.

This included blood work, a DEXA scan, a breast MRI, and meeting with Dr. Davis and Rachael. I’ll quickly run through the results. 

Blood Work

I love NIH. But they are little vampires. Cute vampires. Like the Salvatore brothers circa The Vampire Diaries. 

This visit they only wanted 10 vials of my life supply, which made me feel blessed and highly favored. Typically they take closer to 18-20.

The blood work did show a small bacteria infection. I got a fun antibiotic to nip that in the bud. Taking the antibiotic made me lose about 3 pounds in a week because I was so nauseous. My intestines do not like anything new. I ate the bare minimum while I finished the prescription.  

The good news! My Vitamin D level went down, which has been something we’ve been working on; I was thrilled. 

DEXA Scan

The DEXA is the easiest test. It’s an open machine and there’s no noise. You just hang out with the technician and she has you move into different positions. It’s almost like a game of “Simon Says”….left leg down, right arm up sort of a thing. They benchmark the bone density in my hips and spine.

The results weren’t awesome. In fact, I had lost a little more than 6% bone density in my spine and 14% in my hips. That’s not good.

I take my calcium and collagen every day and do weighted exercises, so this was very disappointing. I need to meet with an endocrinologist to discuss next steps; they may want me to do an infusion or put me on medication. It’s very difficult to rebound bone density, but there are ways to fight losing more.

I’ve been warned that if I ever want to have children I will need a different treatment plan than if I don’t. But that feels like a lot of decision making. 

Breast MRI

If you’ve read my other posts you’ll remember how much I loathe the breast MRI. I mean, I would almost rather go ahead and have the double mastectomy just to avoid more MRIs. For those of you who missed my dramatic recount of the last MRI, allow me to catch you up to speed.

For the breast MRI, they lay you flat on your abdomen, pull your breasts through an open slate – not unlike a cow being milked – and then roll you into the tiny tube of torture.

But don’t worry! They give you a mouse mirror so you can see the outside world. Then the offensive noises kick into gear. For a person who gets anxious quite easily, hates being out of control, and is also claustrophobic – this is pretty much as bad as it gets.

Thankfully, I had a wonderful technician who offered to turn the lights off and she put a fan on me…and my doctor prescribed me a small dose of a little something to take the edge off. As soon as the technician got me…situated…I sealed my eyelids and didn’t open them until the thirty minutes were over and done. 

The results were pretty much the same. I have one spot that was slightly concerning in 2019, but after an ultrasound in 2020 they decided it was not scary. It is most likely a small calcified oil duct. It’s still there but hasn’t grown so we (by “we” I mean the doctors and all my Grey’s Anatomy experience) feel comfortable waiting one more year.

CHD1 puts me at a more than 50% chance of getting lobular breast cancer. I will eventually do a double mastectomy and reconstruction…just not this year. 

Honestly I don’t have it in me for another surgery right now. Not physically, mentally, spiritually, or otherwise. Maybe next year. 

Dr. Davis & Rachael

Dr. Davis said my scar healed nicely. The super competitive and vain part of me struck a pose and I wanted to ask if it was one of the best scars he’s seen. But, I resisted. 

I can convince myself that I have any side effects or symptoms. When I have a headache, I automatically assume it is an aneurysm. I think I’ve told this story so many times it’s no longer funny but when I was in the hospital, I was convinced my spleen was going to rupture. I had an intense pain where (I thought) my spleen was. Every time the doctor would come in for rounds, I’d ask him or one of his fellows “are you sure I don’t need a scan on my spleen”. Finally, one of the fellows broke it to me, “that’s not where your spleen is”. Well, maybe I have a traveling spleen? Have you ever thought of that??? 

Turns out it was nerve pain and went away after two weeks. 

One of my big fears is getting a hernia…which, in my defense is a high risk post-op. I’m a fairly delicate creature to begin with so I wanted to hear from Dr. Davis exactly what my limits are: will lifting a container of water bottles give me a hernia? Can I do deadlifts in the gym (you know, with my 10 pound weights)? I need some guidelines.

Dr. Davis described it like this: imagine someone punched a hole in a wall. You patch it up, paint over it and it looks the same but you’re never going to want to hang a heavy photo in that spot. He said I probably wouldn’t ever be lifting things that would be heavy enough to cause a hernia. I still proceed cautiously…what else is new? 

My time with Rachael is always valuable. She takes so much time to understand what I’m eating, when I’m eating it, and how those two things impact how I feel throughout the day. My level of dehydration was the big takeaway.  When we really measured we concluded that I was maybe getting 16-24 ounces of liquid a day. Which is just not enough. 

Plain water makes me nauseous most of the time; anything bigger than a sip gets “caught” in my throat; cold drinks make me nauseous in the morning but not in the afternoon; chewing ice feels like needles; I don’t like flavored water or bone broth; anything with Stevia or other artificial sweeteners makes me shake; Liquid IV is too sugary for me.

I have had so many negative reactions that I end up just looking at my beverages and hope to absorb them through osmosis. The only plain water I can get down has to have a high pH level: SmartWater, Essentia, etc. Those tend to do better and if it’s the evening, they don’t create as much nausea. Like I said, I’m a delicate creature.

Being the angel and great supporter that she is, Rachael encouraged me that this is not a failure but an opportunity to do better. Before I left NIH, they gave me a bag of fluid via IV. Afterwards, I felt like an Olympian. It was the first time since before surgery that I was fully hydrated.

Before surgery, I would drink at least 32oz of water while I was getting ready for work then drink another 80oz throughout the day. The lack of water has been the largest change for me. Fortunately, I live in a large metropolitan area and there are IV spas. I can sit in a massage chair while they give me a bag of saline. I don’t get any vitamins added to my saline since I take my multivitamin every day (humble brag) and don’t want to throw off any of my levels. I am a brand new person when I leave. 

Ok, now you know I have to overshare about how this is all going emotionally.

One of my favorite questions to ask my friends is: who in the Bible do you relate to the very most? 

I’d love to see myself in Moses being a great oracle for El Shaddai; or Ruth being steadfast in her faith and diligent in her work; oh to be Peter! Having the faith to climb out of the boat and onto the waves. But, if we are being really *really* honest with each other. And we are friends, so I’ll be honest. Most days you can find me in Exodus – just one of the Israelites wandering around the desert complaining, groaning, asking “why, O Lord!”. 

If you aren’t familiar with their Exodus story, I will quickly bring you up to speed. The Israelites were enslaved in Egypt for 400 years. Moses showed up. Moses asked Pharaoh to let them go. Pharaoh says no. Repetitively. God sends frogs, darkness, gnats, and six other plagues upon them all rounded up with the tenth and final plague. That plague killed the first born of every family and animal except for those who put lamb’s blood around their door. We could spend so much time talking about Passover and how beautiful it is, but that’s not the story right now. It was this final display of God’s power that Pharaoh finally let the Israelites go. Off they went. Freedom! But wait, Pharaoh changed his mind and pursued the Israelites. Well. Wouldn’t you know, the Israelites became trapped between the Red Sea and a bunch of people who wanted to kill and capture them. But, God. 

Just a commercial break to say: if you ever thought the Bible was boring…give the Old Testament a try. Much like God’s love, the drama is never-ending. 

Ok, so, God. He splits the Red Sea and not only do the Israelites have a way of passage but they walk through on *dry* ground. Wouldn’t you have hated to be the last Israelite to cross? I can just see myself running down the aisle. The Egyptian chariots behind me. Suddenly a sandal falls off, I’m putting it back on screaming, “Moses, wait, I’m coming! Don’t lower your arms yet!”. 

The Israelites get through. God brings the sea down on the Egyptians – no one survives. Three days later, the people who just passed through an ocean…don’t have any water to drink. They cry out that they’ve been brought out of Egypt to die of thirst. They find water and it is bitter. They complain. Why has God brought them out of captivity to let them die? God leads them to twelve springs. PSA: there happen to be twelve tribes of Israel so no one had to share. He’s a God of abundance. They’ve got their springs, now they are hungry. They complain. Why did God take them out of Egypt to starve? You see a pattern, year? God sends manna and quail from Heaven on a daily basis. This went on for forty years. Forty years!!! God never missed a day. 

Even though they saw God split the sea…they still thought God abandoned them to die of thirst. And then once He overwhelms them with springs of water, they think He will let them starve. We read the story shaking our heads thinking oh my gosh, He’s going to take care of you! Look at all He’s done for you!

Ohhh….wait, hashtag conviction. A little plank & speck of dust moment. 

God parted the Red Sea (my abdomen), destroyed the enemy (cancer), and yet…I complain about not having water (see above for my list of grievances). 

One of my failing characteristics is thinking I can do everything by myself. Which is a fancy way of saying I’m prideful. A certain pride that I can take care of myself and I don’t need anyone’s help or the way that I want to do something is the best way. But, God. 

Oh, He knows how to individually break us. While I eat and drink fairly normal (most days), I’m conscious of what’s happening. I am so grateful every time a meal or a beverage goes down smoothly. Because there are a lot of times when it just doesn’t or I eat the wrong thing and start shaking like a chihuahua.

Saying grace went from semi-flippant “God is great, God is good…” to a very desperate “Lord, please open my esophagus and let this go down. Help my intestines to do their new job. Give me the patience to chew this slowly and the discernment to know when to stop eating”. This is not me being holy. God just knows my heart so well that He had to put a persistent reminder in my life that I am reliant on Him. I am continually eating or drinking and so I am steadily aware of my extreme need for God’s constant grace. 

I get frustrated… a lot. Maybe it is the perpetual exhaustion or just really wanting to go through a drive-thru, order a burger and milkshake and gobble the whole thing (I still haven’t had red meat since Spring 2021) and not have to worry about how it will make me feel. Sometimes it is sourced in wondering what my future looks like with this new life. It can become a lot. And in my low moments when I’m asking God, what will I eat? what will I drink? how do I keep doing this by myself? He gently reminds me of one of His names: Jehovah Jireh, The Lord Who Provides. 

He’s already parted the sea. He walked on the dry ground with me every day through recovery. And He’s not going to leave me on the other side without provision. Even if I have to remind myself every single day while I’m waiting on that daily manna…and quail (gotta have that protein). He is unchanging and He will always be The Lord Who Provides. 

What’s your Red Sea moment? Maybe you aren’t a believer. Do you have a moment that you felt protected, provided for, or comforted? I’d love to hear about it. 

Come A Little Bit Closer

Wow, nine months post-op. I definitely feel like I have given birth to a new life.

I thought it might be interesting (but maybe not) to give you a visual of what I eat in a day.

After months of not feeling super awesome, I finally called Rachael and asked her to give me some advice. I was feeling lethargic and bloated after eating and was starting to become averse to eating because of the way I was feeling.

My blood levels were showing a bit high in different areas so I had to adjust my calcium pills, which I still take three times a day + my multivitamin with 45g of iron. 

Rachael suggested I switch to a pescatarian diet, focusing on plant based proteins. So far, it is working a lot better.

My ultimate “cheat” meal is a grilled chicken sandwich from Chick-Fil-A…which was like a healthy meal pre-op.

I can definitely tell a difference when I eat land animal protein and if I am going to break my diet and eat it, I try to stick to nighttime so I am not weary the rest of the day trying to digest my lunch (ew, I know).

I haven’t had red meat or pork in about two months…and I am now a person who enthusiastically eats tofu. 

Ok, so here it is.

My goal is to get around 1600 calories and 100 grams of protein per day.

Early morning, [I] wake up…

I am super nauseous in the mornings. I can’t drink water and the thought of eating makes me pretty ill. So, I wait until after I’ve gotten ready for the day and then the first thing I consume is my coffee…but, in order to balance the caffeine, I add about a cup of whole milk (9g protein) and 2 tablespoons of creamer. This is my “sweet” treat to enjoy throughout the day. I will drink on this from 8 AM to about 3 PM. Yep, you read that right. I put it in a tumbler and when it gets cold, I enjoy it as an iced drink. Work with what you’ve got…

Total, 9 grams protein + 250 calories

The irony is not lost on me…

At around 10 AM I will eat a snack. It is usually yogurt. I concentrate on a low sugar, high protein variety. This one from Trader Joe’s has 16 grams protein, 5 grams added sugar… plus topping it off with about two tablespoons of pecans adds another 3 grams of protein and 90 calories. Great snack. I’ll maybe switch it up and have a protein bar or oatmeal if I’m feeling wild and crazy.

Total, 19 grams of protein + 320 calories

By 11 or 11:30 AM I am really starting to feel “hungry”. I don’t get normal hunger signals, but instead start to feel shaky, foggy, and begin to lose my words. Once again, lunch is high protein, low sugar, high fat, and moderate carbs. My “go-to” easy lunch is one piece of Dave’s Killer Bread – thin sliced – (3g protein), a slice of smoked salmon (11g protein), two tablespoons of cottage cheese (7g protein). I’ll throw in about five chunks of watermelon or half of a peeled apple as a side just for something crunchy and sweet.

Total, 21 grams protein + 252 calories

From after lunch to about 2 PM., I concentrate on getting in liquids. I work on the remainder of my coffee and start on water. I have found that waters like Essentia, Smart Water, or the Trader Joe’s Alkaline water tend to go down a lot smoother. I don’t question it…I just go with it. Regular tap water and bottled water tend to give me a drowning effect. The water gets caught in my throat and I can’t get it down. It is…unpleasant.

Around 2:30 PM., I start snacking again. Usually just a pack of peanuts for a quick 13 grams of protein + 290 calories.

When I get home from work, I try and get straight onto the Peloton. My output is half of what it was pre-op and I usually burn just around 250 calories. Both during the ride and after I will drink a Fairlife Protein drink. They range in 26-42 grams of protein. My favorite flavors are Elite Strawberry (42g of protein, 230 calories), Strawberry Banana (26g of protein, 170 calories), and my newest kick is the Nutrition Plan Chocolate (30g protein, 150 calories).

Then it is time for dinner. When I am at home, I tend to eat the same boring things night after night simply because I know they are “safe” and I won’t have any issues. A good go-to is marinated tofu (8.5g protein, 85 calories) + pre-made stir fry (9g protein, 340 calories). I eat about a cup.

Total, 17.5 grams protein + 425 calories

Total for the day: 109.5 grams of protein + 1,687 calories (1,437 calories after subtracting the 250 on the Peloton) 

That’s like…a perfect day. A lot of days I become satiated very quickly and will end up eating only half of whatever portion I’ve allotted for myself and don’t hit my goals.  

I use the MyFitnessPal app and the FitTrack scale to monitor all my progress and stats. 

The FitTrack scale is a sleek scale that connects to an app on your phone. After you step on the scale, you get a full read out of so much more than just your weight. It provides your BMI, bone mass, muscle mass, fat mass, water weight, and protein weight to name a few. I find it incredibly interesting and useful to see beyond just the scale number. I also have a lifetime of watching my bone density. To have the ability to get a read out of my current bone mass in between DEXA scans at NIH is handy and comforting.

You can learn more about the FitTrack scale here. (I think this makes me an influencer???)

And that pretty much sums it up. 

Super boring, right? Both the content and the menu. I should say, while I do eat other things, I find a lot of comfort in routine and knowing that what I am about to eat is going to settle well. 

If I am being completely honest, I will admit that this has been harder than I ever anticipated. I know it will get easier with time – it’s already gotten so much easier just from 8 months ago. But, to deal with constantly feeling low-energy and have a sense of “hunger” or emptiness, yet unable to get satisfied on top of just day to day life things…it can feel like a lot.

I recently had a time where I stood at the throne room of heaven and cried so hard I burst several blood vessels around my eyes. It was a really good look. 

I walked away from beseeching God feeling like my prayers had gone no further than the ceiling.

Completely defeated.

That’s where we learn the biggest lessons, eh? My favorite name of God is El Roi, the God who sees me.

If you aren’t a Bible follower, real quick, when God promised Abraham that he would be the father of many nations his old (and closed up) wife, Sarah, laughed. They got impatient with God and Abraham slept with Sarah’s handmaiden, Hagar. Hagar gave birth to a son and Sarah wasn’t too thrilled (even though it was her idea…). Sarah was so awful to her that Hagar ran away.

If you ever thought the Bible was boring, I challenge you to read the Old Testament to see the definition of D-R-A-M-A.

In the middle of the desert, God finds Hagar and deals kindly with her.

Hagar gives this name to the Lord who spoke to her: “You are the God who sees me (El Roi)”, for she said, “I have now seen the One who sees me.”

Genesis 16:13

God sees us where we are; whether it is in the middle of the driest desert, daunting trial or on top of a vibrant mountain. He sees us and He deals kindly with us. I just want to tell you a short story of how God recently met me in the desert. 

A running theme in my quiet time the past couple of weeks has been me asking God the same thing a desperate father asks Jesus in the Gospel of Mark: “help my unbelief”.

Like a pouting child, I have moaned to friends: 

“I think God has forgotten me.”  

“I don’t think He hears me.” 

“I believe He did amazing things in the Bible, but I don’t think He is going to do them in my life.” 

To which one of my friends, in her astounding wisdom, reminded me of our Savior in Gethsemane and how He suffered as man to understand our struggle as mere humans.

Two days after this conversation, I received a book in the mail that I had originally put in my Amazon shopping cart and forgot to buy. My mom mailed it to me because she knows how much I enjoy the teachings of the author, Pastor Jarrett Stephens.

I started reading the introduction…not even the first chapter…the introduction.

Page xvii (we aren’t even on page one yet), sentence one, “God is always for you.” Ok, that’s nice…but, I’ve heard that before.

That same page, Dr. Stephens cites the father in Mark 9:24 crying out “help my unbelief”. Well, that sounds familiar. Page xix …you know what, here’s a photo of page xix.

The Always God, by Jarrett Stephens

Page xx, Dr. Stephens talks about Jesus in Gethsemane.

Page xxii, Pastor asks, “Does God really see me…”.

Oh, and the name of the book “The Always God: He hasn’t changed and you are not forgotten”

I didn’t even have this book in my possession when I was crying out or having those desperate conversations with my friends. I left my prayers thinking I had not been heard. And the whole time the answer was already in the mail. The questions I was asking and the things I was saying were being repeated to me verbatim with an articulate answer. 

Sometimes God says yes, sometimes He says no, sometimes He says wait. He answered Moses with a burning bush and Elijah in a quiet wind. For me…He spoke through Amazon. I asked for God to see me, hear me, remember me and He answered with this, “Always”.

Has my situation gotten easier? No. Has anything changed? Not physically.

But God in His infinite mercy gently reminded me that He is the same God who spoke to Hagar in the desert. He is El Roi.

Always.

And that changes everything.

I pray that wherever you are that you remember God sees you. He is closer than we realize. 

Just a spoonful of sugar

In hindsight, my last post addressed when and how I eat but not so much as specifically what. When I was starting out on this journey I asked every seahorse I met “what do you eat…exactly”.

My meal plan is ever changing. What I ate last month doesn’t always work this month and what someone else suggests might not work for me. But, here is a list of my current favorite items. I hope some of them work for you, whether you have a stomach or not.

Breakfast

Breakfast has always been my least favorite meal (except for Chick-Fil-A minis…) but, mornings are now especially tough for me in terms of getting solids down. I would much rather drink a smoothie or protein drink rather than try to chew and swallow first thing in the morning.

  • Kodiak Power Oatmeal (sorry guys, has to be the flavorless/plain kind) with half a banana, cinnamon, and chopped pecans.
  • Quakers Lower Sugar (my personal favorite is the Maple Brown Sugar) with half a banana and maybe some chopped pecans.
  • Chick-Fil-A Grilled Chicken English Muffin with hash browns. I can eat the chicken, a bite of the egg/ muffin and about 5 hash brown rounds.

That’s honestly it…I can’t do plain eggs (occasionally hard boiled egg whites) and I don’t eat bacon…so I keep it simple.

Lunch/ Dinner

I don’t like a lot of meat. Unfortunately for me, I have to concentrate on protein, so I eat a lot of fish. Think marinated salmon & almond crusted tilapia. I’ll pair them with a sweet potato or some rice. I have to be careful how much rice I eat per day so I have to switch off and have it for either lunch or dinner.

I was eating a black bean/kidney bean soup daily…but I ate so much of it for weeks that I grew tired of it. So, I’m sure I’ll pick it up again later but for now – I stick to fish.

I keep deli turkey in the fridge for “emergencies”. For instance, one day last week I didn’t pay attention to the fact that I hadn’t eaten in a couple hours. All of a sudden, my hands and legs were shaking and I knew I was in trouble because my body was hungry and I couldn’t get anything down fast enough. I grabbed a few slices of turkey, stood in the kitchen holding myself up by leaning on the counter, and chewed as fast as my body allowed. The shaking stopped within 20 minutes…but if you want a full visual of what a hunger “episode” looks like – there you go.

I’m also not above eating a turkey and cheese Lunchable. It’s fine.


Snacks

Here’s the good stuff. Even before surgery I was big on snacks; I could graze all day and skip major meals. I’m not an influencer so I won’t link anything here…but I’m always happy to chat about snacks.

  • Flex Power Chips. Personally, I like the BBQ flavor and they have 10 grams of protein per serving. Big win.
  • Any kind of raw nut. Peanuts, pistachios, and cashews are my go-to.
  • Peanut Butter Pretzel Bites. I mean, come on; no explanation needed!
  • Harvest Snaps “Green Pea Snap Crisps”. If you haven’t had them, they are delicious and since they have protein in them, I can sit down with a serving (read: bag) and eat to my heart’s (read: esophagus’) content and not have to pair it with a nut or other form of protein.
  • Chobani “lower sugar” yogurt. I add a little Kind granola on top and maybe half of a banana. I can only eat half the serving size. This is partly because I don’t have enough space for it to go down in one sitting… but mostly because when I did try to eat the whole thing (greedy me), I had a nice little sugar episode which included some sweating and cramping.
  • Peanut butter and fruit. Whether it’s an apple or banana, I’m just happy to have some raw fruit.
  • Roasted beets, goat cheese, and walnuts. This is a new favorite of mine. It’s a welcomed change to have a new veggie to the mix.


Dessert

Before surgery I would order whole key lime pies and eat it in a couple days (okay, maybe one sitting…no judging). I have a strong love for sugar and cravings are mental so I still want a piece of pie and the following list will just have to do until I can survive a bite of pie again…maybe with some ice cream.

  • Outshine popsicles. I consider these a liquid…mostly as an excuse to eat two per day.
  • Good Pop Freezies. These don’t have added sugar (the Outshine have some); therefore, they are best on days that I’m having trouble with tolerating foods.
  • Dark chocolate covered almonds. I have never appreciated high school math more than standing in the grocery aisle looking at a nutrition label trying to figure out how many chocolate almonds I could potentially have based on the number of added sugars per serving. Talk about a practical word problem. Also, the answer is 4. I can have four. Five is too many.
  • Applesauce. It’s a classic! The unsweetened cinnamon has a special place in my heart.
  • Frozen mango. This was my first “dessert” and still a fan favorite. Mango is easy to digest and it is just so satisfying to eat raw fruit without having to add cheese or peanut butter to it. Also, it’s a pretty amazing fruit. Totally doesn’t get the credit it deserves.

That doesn’t seem like a lot of variety but soon I’ll get cleared to start adding in more. The times I have decided to go rogue and try things not on my list of approved foods have left me writhing in pain. I call it “the wiggles” because despite knowing that laying still will help the most, I will squirm for twenty minutes while I wait for the pain and sweating to pass. So, while it is a really boring menu day after day…I’d rather wait for my body to heal and be ready for the next step versus pushing it and getting caught with the wiggles.

There’s a lot of waiting involved. Waiting until the next meal. Waiting until the next beverage. Waiting to get cleared for exercise. Waiting to advance to new foods. Waiting for the wiggles to subside.

Waiting is not something I’m new to. I’ve heard pastors say one of the most challenging things a Christian is asked to do is to wait for God (can I get an amen?). There are passages upon passages encouraging us how to wait. We are implored to dig deep and hold on for the majesty of the sunrise that is coming if only we have the diligence to make it through the night.

Recently, I was listening to a sermon on Mary and Martha and how Jesus tended to their humanity after Lazarus died. Which is great and noteworthy and such a cause for celebration. However, I couldn’t stop thinking about Lazarus.

Lazarus is described as the one Jesus loved. He was a friend of the Son of God. If anyone should be rescued from sickness and pain, it would be Lazarus. Don’t you think? And yet, Jesus didn’t show up. He didn’t come to the aide of his beloved friend.

I know there was a good reason. Spoiler alert: John tells us exactly why in Jesus’ own words:

“…it is for God’s glory so that God’s Son may be glorified through it”

John 11:4

But, Lazarus didn’t know that. He didn’t know he was going to be resurrected. He was just dying and his friend was not only not saving him…he wasn’t even showing up to say good-bye. I have to wonder, did Lazarus feel deeply betrayed in his last moments? Did he cry out? Did Jesus – our omniscient, omnipresent Savior – hear his cries from afar? Did that break the King’s heart?

And my most important question: what did it feel like…what was the relief like when Lazarus heard Jesus call his name from outside the tomb?

I mean he was…dead…all the way dead…four days dead. Then all of a sudden, he hears his name. I’m guessing despite the burial bandages it was a hop up. Maybe even with a fist pump and a “yes!”. In my ever beating Southern Baptist heart, I think Lazarus was the first one to give us a chorus of

Yes, Lord…Yes, Lord…Yes, yes Lord…Amen


Sing it if you know it…I’ll wait. Takes you back to church camp, eh?


Got carried away there. Sorry.

If you’re in God’s waiting room, that’s all we are hoping for, isn’t it? We’re just counting ceiling tiles waiting on that door to open and our name to be called out. Waiting for the Savior to say your name. To command you to come forth.

I’ve heard Dr. Evans joke that Jesus had to specifically call out to Lazarus because if he had commanded a general “come forth”, there would have been resurrections all over the graveyard.  

Lazarus ministered to so many people through his testimony. Personally, I’d believe the guy who was raised from the dead. But, before he could do any of that he had to wait. He had to be called. And with his name, came instruction.

God is personal. He sees us right where we are. He knows our names. He knows how long we each have to wait. He knows what instructions to give us when it’s our turn.   

And I don’t have to ask Lazarus to know: the waiting will be worth it.

A few ounces

The question I get asked most: “what do you eat?”…which is understandable. I mean, I’m kind of missing a major part of the whole digestion process. 

If you’re a fellow seahorse reading this, I hope this entry helps you on your journey. If you still have your stomach, I hope this encourages you to appreciate how magnificent the human body is and provides some educational fun.

There are so many different aspects, rules, and parts of my new eating routine. I am going to try to organize this as best as possible. But, if it seems confusing, it’s because it is. I’m still learning and still making mistakes.

Let me take this opportunity to reiterate that I am not a nutritionist nor should anything I write be perceived as medical or nutrition advice. Phew. Ok, got that out of the way.

Nutrition

The stomach is a key player in how your body absorbs all the yummy vitamins and nutrients that are in the foods you choose to eat; without a stomach, that absorption changes. What does that mean for me? In order to avoid osteoporosis and deficiency, I take a number of vitamins throughout the day. While I wish I could take some yummy vitamins like Olly or Flinstone’s…I take vitamins made specifically for gastrectomy or bariatric surgery patients.

They are chewable…and…chalky. 

Every day I am supposed to take three calcium tablets (total of 1500mg) spread throughout the day. Why so much calcium? Well, now one of the main concerns I will have moving forward will be bone density. In addition to the calcium, I will also (eventually) start doing exercises that will concentrate on building bone density. 

The multivitamin I take, which has 45mg of iron, cannot be absorbed with any type of calcium so it has to be taken separately and without any kind of dairy. The multivitamin also has a medley of B6 & B12, which can no longer be absorbed via food.

The last pill I take is 5,000 mcg of biotin. It’s a small little pill that is mostly for my vanity. My hair has started to fall out. They say it is normal and a reaction to both surgery and the sudden decrease of nutrition. But, the biotin helps. I’ve also added a product called Vegamour into my routine to help regenerate the hair I’ve lost.

So…those are my daily vitamins. Jealous? 

Protein

While we are talking about nutrients, let me dedicate a whole section to protein. 

I have never thought about the grams of protein in each meal more than I do now. 

Not only is protein critical to healing, but it also slows down the digestion process. Before I eat any type of carb, first I make sure I get a few strong bites of protein.

Braver seahorses will try sweet treats after a few bites of protein. I’m not quite there yet. But, I have tried 3-4 dark chocolate “dusted” almonds. After weeks of no sugar, they are life changing.

Liquids

As you may have previously read…I love water. A lot of seahorses struggle with plain water because of the density level H2O naturally has. The best way to describe how it feels going down: it gets stuck. It’s like the water won’t push down the esophagus so it just sits. It is extremely uncomfortable. Sorry if that is graphic but…no sense in lying. To combat this, I squeeze lemon into my water to help “cut” the density. I’ve also tried Hint, Vitamin Water (zero sugar), and ice. Ice is a harsh no-go for me. Vitamin Water (zero sugar) is much easier to get down, but I don’t like to consume a lot of artificial sweeteners. Most days I try to just suffer through regular water and hope for the best. On a good day I get around 60 ounces of water. It’s not a lot but I’m trying every day to add more.

Why is it such a challenge to get a high volume of liquid in? Well, a couple reasons. First, the whole getting stuck thing. Second, there’s no gulping (and no straws); everything has to be sipped. Finally, I can’t mix liquids and solids. Before I eat a solid, I have to wait 30 minutes after drinking and then another 30 minutes after I finish eating to start drinking again.

This is to prevent a flushing situation. Additionally, I only have so much space to work with…here’s a visual reminder. 

https://www.nostomachforcancer.org/about/life-without-a-stomach/gastrectomy

So, with that in mind there’s a limited amount of space to fill with either solids or liquids and it is a competition to get as many calories in at each feeding time. If I filled my available space with water during a “meal”, I couldn’t get as many calories in.

However, there are a lot of days where the thought of chewing food seems like too much. On those days, I turn to smoothies and protein drinks. If I am going from liquid to liquid I don’t have to wait in between smoothie/ water/ broth and just continuously sip.

Solids

It’s honestly amazing how far I have come in 11 weeks. 

The first few days after I got home from the hospital it was a relief to just eat non-hospital foods. I was still only taking 2-6 ounces of food at a time. I was sticking solely to safe foods, little flavor, and timed every meal.

For example, here is one day from my food journal.

  • 7am – 9am: 16oz water (sip, sip, sip)
  • 9:00am: 4oz of a smoothie (blueberry, banana, benecalorie, peanut butter, Greek yogurt, Fairlife milk) + calcium tablet #1
  • 10:00am: 1 cup warm lemon tea, 4 oz chicken broth
  • 12:00pm: 3oz tuna, mayo, 3 saltine crackers + calcium tablet #2
  • 1:00pm: 6oz water
  • 3:00pm: 4 bites chicken pot pie (made only with peas & carrots) + calcium tablet #3
  • 3:30pm: 6oz water
  • 5:00pm: 6oz Fairlife milk
  • 6:30pm: 2oz turkey, 2oz baked potato with cheese, butter, and sour cream, a dab of sugar free BBQ sauce + multivitamin
  • 7:20pm: 6oz water
  • 8:15pm: 2oz tuna & 2 saltine crackers
  • 8:50pm: 6oz water

On this particular day, I remember I over ate at dinner and had to take a 20 minute nap to let the pain pass. Pain from eating? Oh yes. Let me introduce you to a fun new phrase: dumping syndrome. 

Mayo Clinic defines the cause of dumping syndrome as: 

In dumping syndrome, food and gastric juices from your stomach move to your small intestine in an uncontrolled, abnormally fast manner.

https://www.mayoclinic.org/diseases-conditions/dumping-syndrome/symptoms-causes/syc-20371915

Symptoms of the syndrome are: 

  • Feeling bloated or too full after eating
  • Nausea
  • Vomiting
  • Abdominal cramps
  • Diarrhea
  • Flushing
  • Dizziness, lightheadedness
  • Rapid heart rate

Aren’t you so glad you read this? It’s so attractive. 

My personal experience with the condition has been flushing and rapid heart rate. I have experienced the abdominal cramps and boy, was that fun! The best way for me to get through it is to get very still and close my eyes for about twenty minutes until it passes. 

With that in mind, my selection of solids mostly revolves around what is not going to send me into an episode of dumping syndrome. This means avoiding foods with more than 3 grams of added sugar, always eating a protein first, eating *very* slowly, chewing until I can’t chew any more and then chew one more time, and learning when enough is enough. 

In addition to sugar, other foods that are currently off limits include, but are not limited to: carbonated drinks, red meat, pork, wheat, lentils, raw veggies, raw fruit, honey, potato skins, maple syrup, agave nectar, cereal, sweetened sauces, sugar alcohols (sorbitol, etc), meat with casings (sausage, hot dogs), high fiber foods, fried foods…you kind of get the picture? 

My “safe” foods are: creamy peanut butter, cheese and crackers (Ritz are a current favorite), cashews, pistachios, plain Greek yogurt, salmon, mashed potatoes, no sugar added oatmeal.

Foods that I can do occasionally, but don’t like: eggs & chicken. I only eat them when I am desperate for protein. They are super challenging for me to swallow. 

I should enter “phase 2” at the end of the year and be able to add more variety. I very much look forward to that milestone. 

This is hard. I don’t want to complain because there are people who have it so much worse than me but, this is hard. I was recently reminded that it’s ok to not be ok. So, I’ll tell you the bad. 

I never feel hunger. I never feel satisfied. I constantly battle fatigue. My new hunger “signal” is getting lightheaded. I dream of food. I am always thirsty. I don’t have any cheat days. There are good days, but the bad days are beyond frustrating.

I hear people say “it will get better” and that’s so easy to say. This is mentally the hardest thing I’ve had to overcome. It is a daily battle. Some nights I think back on the day and shake my head knowing I didn’t get enough calories, protein, or liquids. There’s nothing I can do but make an effort to do better the next day.

I am physically weak. I have to ask for help more than I’ve ever had to in the past. I can’t lift more than a gallon of milk. My prayers come in short, quick, urgent pleas – “Jesus, help me”.

But, I am grateful to have the rest of my life and I will appreciate my body and the amazing way it has adapted. It’s getting better and it will continue to get better. I have so much to be grateful for and one day I’ll get to have the bite of ice cream I dream of and it will be wonderful.

Yes, there are a lot of rules. I am finally getting the hang of it, but they say it takes about six – twelve months to really click with the new system. That seems like a long time, but in the grand scheme of things a year is nothing in comparison to the gift of living cancer free.

There is a story in Ezekiel where the prophet is led to a valley filled with dry bones (chapter 37). The quick version: God asks Ezekiel “Son of man, can these bones live?” Ezekiel replies, “Sovereign Lord, you alone know” (v3). Then, through God’s power, the dry bones are restored and life is breathed back into what was lost. Whether you’re a Bible believer or not, this is a confusing passage. However, I mention it because I have never related more to the heap of dry bones than I do now. 

But just like the heap of bones in the valley, there is nothing beyond God’s restoration. There is no situation beyond His power. What a gift I have been given to reach the end of myself and my own ability. One of my most favorite teachers and authors is Dr. Tony Evans. He has this description of faith:

Faith is acting like something is so even when it is not so in order that it might be so simply because God said so.

Psalm 27 says, “I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord” (v13-14). 

I have faith that I will see the goodness of the Lord in the land of the living. And on the days that I choke on water and cramp from eating peanut butter, I’ll remember that I could have lost my life to the cancer that was growing inside me. 

I was saved. It’s humbling. God still has a plan. And it will all work for good…God said so (Rom. 8:28), even though it doesn’t always seem so.

If you feel like you’re a heap of dry bones, know that you aren’t alone. It’s ok to not be ok. It’s ok to ask for help. And if you need a friend, I’m here. 

Can these bones live? The Lord alone knows.

Sorry these always get so deep, I’m sure you just wanted to know how much yogurt I eat. But, this is a physical, mental, and spiritual journey. Buckle up, buttercup (which makes me want a Reese’s cup…).

Also, just a note of thanks to Rachael at NIH. She works so hard and cares about her patients so much. She answers every desperate question of “can I eat this” and “should I try this”. If you’re looking at programs for total gastrectomy, NIH is amazing in general but Rachael is truly life changing.

Statistics

November is stomach cancer awareness month. You may be as surprised as I was to learn stomach cancer is the fifth most common cancer type in the world. Who knew?

I had a lot of people wonder why I’d take the radical option to remove my stomach when my 88 biopsies came back clean.

To be honest, I questioned my decision up until they put me under anesthesia. Then, because of how challenging the recovery has been, I wondered for weeks if I had made the right call. If CDH1 impacts 90%, what if I was part of the 10%? What if I changed my entire life for no reason?

At my one month check-in, Dr. Davis told me the pathology results showed there were several spots of stage 1A cancer. Just like that, all the what if’s disappeared. When I received a copy of the pathology report, I saw there were in fact twelve spots of cancer. Twelve.

In my deepest gratitude, I thank God for giving the doctors the wisdom, knowledge, and talent to perform this complex surgery.

I am grateful for being saved. I am humbled that I have a future.

HDGC has a 90% chance of growth with a 5% survival rate. I went to extreme measures to guarantee the foreign cells inside me couldn’t kill me.

In the same way, sin has a 100% chance of growth with a 0% survival rate. Being set free from it’s death sentence is easier than chemo, radiation, or organ removal. It’s as easy as trusting Jesus.

I want to tell you this: there is hope. There is a future. There is an abundant life.

We are all going to spend eternity somewhere, I hope you’ll choose to spend it with Jesus.

There’s a 0% chance you’ll regret it.

Homeward Bound

I’m free!!

I was discharged and sent home.

Before anything, I have to acknowledge the goodness of God in giving me the absolute best nurses for my last few days in the hospital. Not having family around due to Covid, means relying on the nurses even that much more.

Selina was able to be on my service every night and during the day I had Kate, who previously helped my dad when he was at NIH. She’s amazing and would stay and visit with me after taking my vitals to make my day go by faster. She thought of things I didn’t even know I needed. For instance, she even made sure to give me my dose of Advil before I got on the airport shuttle because she said it would be very bumpy. She was right. Again I will say, nurses do not get the credit or appreciation deserved. They are angels.

The last couple of days have been much less dramatic than the first portion of my stay. If I were to lump this into categories, it would be nutrition and pain. 

Nutrition
Eating and drinking are two things that come completely by nature. Babies are innately hungry and thirsty. It’s simple. Therefore teaching myself how to eat and drink in a new way is completely foreign.

Let’s say, on a typical day…a typical breakfast you may run to Starbucks, grab a breakfast sandwich and a latte and consume both within a half hour…bite here, sip there, chew, swallow, drink…maybe you take a little longer to linger on your latte. Maybe you’re drinking your latte in the car and Britney comes on and you have to belt out to Stronger in between sips. Maybe you get a phone call and you chomp a bite of breakfast sandwich down quickly in between sentences. This seems…normal, right? 

Let me now introduce the new rules I have to apply. 

Food and liquids cannot be consumed together. Without the stomach, the intestines can’t handle both at the same time and will create a flushing situation. 

Liquids can only be consumed at least 30 minutes after food has been finished…or 30 minutes before I start eating. Again, it’s too much for the intestines. 

I no longer have a stomach to help grind up my food. Now I have to take extra time to chew my food. For instance, this morning it took me one hour to chew one boiled egg white and four baby bites of oatmeal. 

It’s also important to wait in between every baby bite so the bite before has time to wiggle its way down the esophagus. This takes an incredible amount of patience. I will say, the couple of times I have rushed, pieces have gotten “caught” in my esophagus and it is a very odd sensation breathing through the body’s attempt to work it down. 

Right now, my small intestine hasn’t stretched at all. It is very mad at me and hasn’t caught onto the program of what’s happening. This phase (phase one), usually lasts about 6 weeks. Overtime, the intestine will get with it and stretch out a bit allowing for more food at once. But that’s to come. 

I need to avoid taking in a lot of air when I’m chewing so I am chewing in silence and without breaking to talk. Why? Because the stomach can handle when you open your mouth between bites and take in a big gulp of air with your next bite. The stomach can stretch and hold the air and your food. The intestines cannot. 

It is so much to learn. I know I will find a rhythm. I’m very good with rules and schedules. But it seems overwhelming. I have to get creative with ways to get liquids in and get protein in at every meal. 

Protein slows the digestive system and makes things easier on the intestines, so before I have anything else to eat, I have to eat some form of protein. One of my favorite foods right now is apple sauce. It goes down easy, it’s sweet, and it tastes fresh. But before I can eat apple sauce, I have to eat either yogurt or peanut butter. 

This is no longer about what tastes good, but what fuel my body needs. I no longer feel hunger. Instead, when my body needs food, I now borderline faint. I get incredibly light-headed and weak. Again, it’s going to get better. This is just a huge learning curve. 

There are plenty of seahorses who master meals like champs. It will get better. I am just at the starting line.

Pain
They switched me to oral pain medications and while they offered stronger options, I decided to stick with Advil and Tylenol.

My chief complaint is a stabbing pain in the left side of my lower abdomen. I’m not sure when it started, but I started to feel it once the epidural wore off.

It’s an odd pain. It happens sporadically. It happens often. It happens after I eat. It happens after I drink. It happens when I sleep. I’d say it happens when I think, but I don’t want to sound like a bad Dr. Suess rhyme. 

The pain darts in, and on a scale of 10, the pains come in hot at about an 8. They stop me in my tracks and I usually have to hold onto the nearest wall and breathe deeply until they pass. I’ve talked to every doctor on my team and no one has a great answer for what it is….mostly because the pain is in an area untouched by surgery. 

I told them I looked it up on Web MD and was worried it might be my spleen. They informed me that is not where my spleen is located. I reminded them on an episode of Grey’s there was a case of a traveling spleen…you can guess how well that went. 

The most logical response is it is a muscle/ nerve issue that needs to work itself out. The new process of food/liquid intake makes the intestines very confused and unsure. I think my intestines are pouting.  

When Dr. Davis was giving me tips on helping the pain he said walking (of course) and also stretching. And then he demonstrated which stretch I should do. If you’ve been to a Baptist church, you’ll know the move well: hands raised above my head and stretched out in a wide V. 

A position of praise and surrender. 

What a God wink reminding me that when I feel the most pain is when I should take a position of praise. If you’ve ever questioned God’s sense of humor…let me ASSURE you. 

NIH is where the abnormal is normal. Being in the oncology department opened my eyes. Yes, my situation is less than desirable. Yes, I wish I still had my stomach. Yes, I want to chug a gallon of water. Yes, I’ve thrown myself tiny pity parties (without cake). And then I see people down the hall who are stage IV wishing they had been able to catch it earlier, like me. Parents watching their children consumed with a disease that does not hold back. 

With that shift of thinking, I’ll take my new eating schedule. I’ll take my nerve pain. I’ll take the esophagus contractions. I’ll take it. 

And when the pain is too much, I’ll stretch my hands to the sky and offer it to Great Physician.

See A Victory

Where do I even begin to describe the last few days? The only logical place is at the beginning. This might be a little graphic, but hopefully gives future seahorses insight and is as honest as I can be. 

SUNDAY
Sunday morning, a friend graciously drove me to NIH. I was supposed to arrive at 9:00am, but by the time I walked to the only entrance designated for weekend arrivals and the security guard had me unpack my entire suitcase, I was closer to 9:45.

Upon arrival to the clinic, I was given a wristband with my ID markers and a blood type bracelet, in case I require a blood transfusion during my stay. They led me to my room – 3-2648, NW 3 and left me to “nest” while they got the appropriate tools to take yet another COVID test, and yet another pregnancy test. Both came back negative. 

I was then told I needed to get an IV port inserted. This would be the port for all my drugs over the course of my time here. I have exceptionally small veins and so they ended up having to use a vein on the side of my wrist. I’m sure there is a technical name for the vein, but it wasn’t mentioned on Grey’s Anatomy, so I don’t know. 

Next, I needed to get a chest X-Ray, which took all of 10 minutes and was completely painless. My blood results came back that I was very low on iron, which has always been a bit of an issue for me. They hooked me up to an IV and started an iron infusion. The nurse warned me, “this could cause numbness or swelling of the tongue, so let me know if you feel anything”. Awesome.

Fortunately, I did not and it went in just fine. 

The rest of the evening I spent drinking water while on FaceTime with friends, family, and my home pastor called to pray over me. The nurse said she would wake me around 5:45 so I could shower with an antibacterial wash and get dressed and ready for the team to come get me. 

Needless to say, I did not sleep well. 


MONDAY
5:45 came very fast Monday morning. I showered and was dressed by 6:10 and was told they would come get me at 7. By 7:30, they were finally ready for me.

Two friends had sent me the same verse and I believe it was God’s way of reassuring me. 

The Lord himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.

Deuteronomy 31:8, NIV

They got me onto the stretcher and pushed me back to the pre-op room where the anesthesiologist was waiting to put in my epidural. I kept repeating over and over to myself Isaiah 41:10:

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

But still, the quiet tears came. The anesthesiologist could see I was upset and so she pushed some Valium to help me relax a little. Then the epidural came. They had to keep me awake so I could verify the numbness, but as soon as the probe went in…let me pause to say this isn’t like an epidural shot, this is an epidural catheter which would stay in for about 5 days. It is a long funny looking torture device. I didn’t see anything because I passed out. My blood pressure dropped from the medication pushed through the epidural and I started vomiting. Great way to start a morning. They laid me flat on my back, gave me more Valium and I vomited again. The next thing I remember is seeing Dr. Davis standing with his scrub cap ready to go and then I was in the recovery room. 

Let me take a moment to say a very big thank you to everyone who took the time to pray for me. I appreciate you flooding the throne room on my behalf. I certainly needed Michael, Gabriel, and the hand of Christ himself. 

They rolled me back to my room and that’s where things started to go wrong. 

I remember them asking me if I could move myself into bed from the stretcher and shaking my head. I was lifted back to my bed and started convulsing. Apparently this happens when people come off anesthesia, but when a tech came in to bring me a warm blanket, I asked her if my chest was supposed to be tight. I have never seen doctors rush into a room so quickly. I was having trouble opening my chest and I told the ROOM FULL of doctors “you know how when you get implants, it feels like an elephant on your chest?” 

I was extremely itchy and they determined I was allergic to the Fentanyl going into my epidural. I was still convulsing so they took my basal rate of Bupivacaine from a 10 to an 8 and removed my Fentanyl completely. They quickly took an EKG and a chest X-Ray to make sure I was ok – I was so thankful for their full attention and thoughtfulness. They left no stone unturned. 

Then the night came. 

TUESDAY
I am not sure what time I woke up, maybe 2 or 3 am and I pressed my call button for help, because once again I couldn’t breathe. And this time, I really thought I was about to meet my Maker.

The anesthesia wore off and I was made very aware that my epidural was only numbing the left side of my body. This means, I felt every ounce of pain on my right side. I could only take very shallow, very short breaths. I was genuinely terrified. 

The epidural has a basal rate which gives a constant flow, but then I have a magic button to press in extreme pain. But regardless of how many times I pressed the pain button, it still wouldn’t help my right side. The nurse suggested I set a timer every 15 minutes and wake up to press my button and that I really should have pressed it sooner. Through my tears I told her “I can’t breathe, you have to help me”. And maybe her hands were tied, but she just stood there hands on hip and so I started calling out for Jesus. The pain finally passed to a point where I could breathe and I was able to go back to sleep. I’ve had some tough moments in life. That was one of the very hardest.

For the first few nights, they took blood samples every morning at 5am and would weigh me at 5:45. The doctors round around 7am and so around 6:30, the nurse got me out of bed and into a chair. Ouch! They cut into those top abs, so any assistance they may have given was totally out of the question. I could not even get my own legs out of the bed…mostly because the epidural made my leg numb on my left side. 

The nurses changed shifts at 7am and I got a truly fabulous nurse for the day. Nurses make the entire hospital run and we do not give them enough credit or pay for the things they have to do. I will forever be grateful to my nurse, Katie…and as you read you’ll see why. I am going to leave a few details out because we don’t need to talk about catheters, but let’s just say I was having a rough day. 

I explained to Katie and the doctor who first rounded on me my issue with numbness only on one side. They called the anesthesia team, who sent someone to do a numbness test. I could feel everything on my right, nothing on my left. 

So, they said they would be by around 3pm, because they had to wait until my heparin shot had worn off ( I get a heparin shot every 8 hours to help prevent clots). Closer to 5pm, the anesthesiologist arrived. They undid all the taping around my epidural and the doctor pulled it out about 2cm to hopefully spread the numbness to both sides. In order to check the epidural, she needed to send some medicine through the cord. So she injected me. Then we sat and they started taking my blood pressure every 5 minutes.

I started to feel very woozy and told them “I’m not feeling so great” and Katie caught me as I passed out in the chair. My blood pressure had bottomed out at 81/37, which is very low. And if you remember from earlier what happened when my epidural was placed….I vomited. Well, that was FUN. Katie was there patting my back and holding an (empty) bucket. It was a really special day.

So then I was worried about causing a leak internally because my forceful act made my incision bleed. The doctors were not concerned and said the bleeding from my incision was normal and not to worry. This team of doctors is truly top-notch. I worked them hard and they still took the time to reassure all my hypochondriac tendencies. 

I went to bed hoping it would be an easy night! 

WEDNESDAY 
I woke up around 1am and called the nurse because I was extremely hot. She took my temperature and I was at 100.4. Because I was not on any opioids, I was relying mostly on a Tylenol infusion. I went back to sleep and woke up with a normal temperature. My night nurse this night was amazing. She was so kind to me and called me her princess. I love my Selina! 

Wednesday was finally better. I took in every single victory. I was able to drink some chicken broth, beef broth, and even some straight water. Some seahorses can’t do water without it being “cut” by something like lemon or lime, so I felt like this was a huge success. 

They want you to walk at least a mile two days post op and I wasn’t going to let them down. It was a struggle, but I did it. 

THURSDAY 
Thursday morning I woke up and I had finally slept more soundly. Other than the vitals checks, heparin shot, and 5am blood draw, I was snoozing!

They dropped my saline drip down to 10ccs per hour and were trying to make me more independent on relying on the protein drink they suggested. The dietician at NIH, Rachael, who honestly deserves a medal for how amazing she is, told me getting the drink down wasn’t necessary but rather a goal. I think its the first goal I really have ever passed on. I just couldn’t get past the taste. Instead, I worked on more broth and ice chips. 

Selina was my nurse again and I told her I was going to bed early and I’d see her when she came to do my meds. 

FRIDAY
After they weighed me, they told me I could get back in bed. Sweet Selina let me go back to sleep and sleep until 7:30, which was truly life changing. 

I woke up completely ready for the day. 

This day was also particularly wonderful because my Dad scheduled his check-up cat scan while I’d be up here and so he was allowed into the clinic center. Because of COVID, no visitors are permitted onto the premises.

Additionally, I was allowed solid foods! I started the morning with five bites of scrambled eggs. Throughout the day, I had 2 ounces of mac and cheese, 2 ounces of applesauce, peanut butter, cottage cheese, and ten Goldfish!! It is a huge learning curve and my Potassium was a little low, so they gave me a drip to boost it back up. 

The best news of the whole day: I was anticipating having my epidural out on Saturday, but the anesthesiologist said since I had lowered my basal rate to a 4 there really wasn’t a point in having it. I got it removed a whole day early…which meant…I. Could. SHOWER!!! I also love winning, so getting to do something earlier than expected is a huge mood booster for me. 

Since the epidural was out, I was able to request acupuncture who magically appeared an hour after requesting. It was fabulous. 

After so many tough days, I was really grateful to have a good one.

SATURDAY 
I didn’t sleep as well as I had hoped just because I got hot and had mild discomfort. I am refusing opioids and so it’s a bit of a struggle to get truly comfortable. 

I didn’t do as well eating because it’s a lot to learn. There is so much chewing required. I also dreamed of a cheese and bean burrito and somehow the hospital food is just not living up to my dreams. 

The lack of sleep over the course of several days led to two different naps and when one of the doctors rounded on me, I dramatically threw my hand against my head and said “I had to take to bed”…between that and my new silk robe every day, I hope I have brought them a little entertainment.

In all seriousness, they are truly remarkable human beings who are using their God given talents to save lives. I cannot say enough about the entire team.

I have Selina again tonight so despite some moderate pain, I am hoping for a good night and great Sunday. Selina just brought me a heat pad for my pain and some ice. What an angel.

The doctors have said if I continue, I will be able to go home on Tuesday!! Wouldn’t that be wonderful? 

To everyone who has prayed, sent flowers, texts, memes over Instagram…thank you. 

I am truly humbled by your thoughtfulness, generosity, and concern. 

Something in the Water

The last couple of days have been intense. I will write more about them later but just a preview: a fever, vomiting, passing out, bleeding incision site, an emergency EKG and chest X-rays are included.

But one thing I am focusing on it such a simple need.

I’m thirsty. 

A drink of water, something so simple, seems unattainable right now. Day one: no liquids, no ice, nothing. Day two: minimal ice cubes to make my mouth comfortable…whatever that means. Tomorrow (if I get the doctor’s approval) I will be able to take in 60ml of clear liquids. 

60 milliliters. 

Before surgery I would drink 100 ounces of water a day without thinking twice. 

I know it will get easier with time. I know that it will get better eventually. But today, right now, I’m thirsty.

“as my heart grows faint…lead me to the rock that is higher than I” (Psalm 61:2)

I have never been more aware of my desperate humanity, my inability to be self-sufficient, and my overwhelming need for divine intervention. 

Easter has always been my favorite holiday. As a little girl it meant a trip to the beach for Spring Break, colorful clothes, suntans, TCBY, and white shoes. As an adult there is nothing I am more grateful for than the blood shed on Good Friday and the resurrection of Easter Sunday. 

Today I have never been more grateful for the words Jesus spoke on the cross. Christ made seven statements while hanging on our Mercy Tree, and if you grew up in the church, you know where I’m going. In John 19:28 to fulfill the prophecy, Jesus said “I thirst”. Usually when pastors review the statements of the cross, they use this verse to illustrate Jesus’ status as full man while being full God. But today, they speak to my broken, lonely, scared, and pained heart. To that part of my soul that thinks no one knows what pain I’ve experienced in life, to that part that believes the lies that I am unworthy of love, to the broken places that I think will never heal…to this gaping wound on my abdomen…it’s to those parts of me that this simple statement speaks. 

Like a soothing salve, hearing my Savior say “I thirst” is like Him saying “shhh…I know. I know. I know it hurts. I know you’re in pain. I know. It’s not easy and it won’t be, but I’m here. I know.”

Every day of my life was written on His hands. As He hung on the cross He knew I not only needed His blood to wash away my sins, He knew I needed His words to comfort me along the way and so He spoke “I thirst” and I know He already saw this moment. He knew I needed those words today. 

Your days are written on His hands as well, my friends. I don’t know what you’re going through, but He does. If He can soothe me in this hospital room, He can meet you anywhere. Don’t believe me? Next time you take a sip of water ask Him to show up for you. He will. He always does. 


Drumroll, please

It’s hard to believe, but we are finally here. My surgery is scheduled for Monday morning and there is a lot to do to prepare. This will probably be a very boring post for those of you who are not in the process of or considering a TG, but feel free to read along! 

First things first, NIH recommends having three six ounce “Impact Advanced Recovery” drinks for the five days leading up to surgery. Unfortunately, I will only be able to complete four days…but we will go with what we’ve got. These drinks have 18 grams of protein and are packed with all kinds of vitamins which support a healthy recovery. They are…delicious. Wait, if you didn’t pick up on my sarcasm, go back and read it again. Did you get it that time? 

Don’t these look delightful?

I’m not sure how other hospitals who perform TGs do things, but at NIH they schedule you for a full day of pre op tests to aide in the research portion. 

I arrived to NIH at the gracious hands of a good friend who was willing to drive me so I wouldn’t have to worry about either being late or taking an Uber/metro. 


One of the first faces I saw at security was the sweet gentleman who spoke to me about Jesus and with whom I was able to share my Dr. Tony Evans book the last time I was at NIH. We had a nice moment of “I remember you!”. The morning was off to a great start! 

I made my way through the campus and into the clinic center where I was screened with a temperature check and an oral COVID-19 questionnaire. I was also asked to replace my fashion mask with a surgical mask. I’ll be honest, my fashion mask smelled like laundry detergent and the surgical mask…did not. 

I received a “screened” sticker and was sent on my way. 

First stop: phlebotomy. The waiting room is filled with chairs (six feet apart), a fish tank, and a TV playing “soothing” videos of gophers and mountain goats chewing grass. Fortunately, I only had to wait 15 minutes and then was called back. 

Once there, I had 21 tubes of blood drawn. Twenty. One. 

I wasn’t allowed to eat anything after having blood drawn because I had a CT scheduled for later in the day and eating would interfere with the results. But, by grace, the EKG was next and I was able to lie down. 

The EKG was quick and painless. Definitely the easiest part of my day. While flat on your back, sensors are applied on your legs and arms, and chest. It takes longer to set up than to actually run the test.

The COVID-19 test was next and it was not so painless. However, I had the nicest woman execute the test with extreme gentleness. Once she was prepared, she stuck the test tip up my nose, let it sit for a long ten seconds, then had to twirl it around and pull it out. It’s not pleasant, I’ll put it that way. The nurses told me throughout the day they get tested weekly, which is just amazing! 

A DEXA scan was next, which is used to evaluate bone density. This was also an easy one. It is an open scan and just a couple of different positions here and there and it’s over! Because I won’t be absorbing as much calcium through my food, there is great concern over long term bone density. 


After the DEXA scan, I met with the “pre-anesthesia” office who asked me a few questions, looked over my EKG and explained how the epidural would work. Basically, they will confirm I am indeed myself and that I’m scheduled for a TG. They will then give me a small dose of drugs to take the edge off but not enough to knock me out. I will still be awake in the operating room while they place the epidural between my shoulder blades. They need me to be awake so they can make sure the placement is comfortable and if I feel too much of a pinch, I can let them know to avoid nerve damage. Once the epidural is set, they will give me the rest of the anesthesia and I will go to sleep and wake up without a stomach. 


Casual. 


The last appointment I had for the day was a CT with contrast. Prior to going back to the machine, they asked me to drink 240 mg/mL of Iohexol Oral Solution. I really struggled with it. The solution was not going down and really wanted to come back up (ew).  A nurse walking by asked if I was ok and confirmed with the technician that I could stop and we would just go with the 60 mg/mL I had already consumed. The CT was so much easier than the MRI. They took a scan without contrast and then, using my IV, shot contrast through my system. What an odd experience! If you’ve never had it done, it feels like a heat wave through your body. After another quick scan, it was over. It took no more than 15 minutes. 


Feeling like I was finally done, I started out of the hospital and then received a phone call from the palliative care team at NIH who wanted to check on my mental well-being. Because I had been fasting all day for the CT, I really wanted to tell them I’d be a lot better after a burger. 


Once I convinced them I was mentally stable, I was able to go on my way. 


And if you’re curious, I did finally get my (shroom) burger. 


Now, I wait.

You will keep in perfect peace those whose minds are steadfast, because they trust in You.

Isaiah 26:3, NIV