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

Final Countdown

Hi.

It’s been a minute.

My surgery date was moved from April 20 to May 18 and plot twist: I still have all my organs. 

We postponed again and are in the final countdown to my end of August surgery date.

I don’t have anything truly profound to say in this post other than thank you.

I know those around me are just as exhausted hearing about my surgery as I am talking about it.

Thank you to those who have reached out, prayed over me and for me, sent cookies, dropped cupcakes at my door, mailed me goodies for the hospital stay, entertained my text monologues about every *possible* thing that could go wrong, pushed me to go further on the Peloton, and FaceTimed with me while watching Love Is Blind (did y’all know Jessica is 34…and Mark is 24??).

I am so deeply grateful.

The verse that I continue to be drawn back to is a little one in Psalm 42.

Deep calls to deep in the roar of your waterfalls; all your breakers and your billows have swept over me.

The Lord will send his faithful love by day; his song will be with me in the night — a prayer to the God of my life.

v.7-8, Christian Standard Bible

Basically, if you’ll allow me to paraphrase what I get from that: I’m drowning here…getting slammed over and over. It feels like everything that could go wrong is going wrong…yet in the roar of rushing water there is a quiet voice calling to me to go deeper. And in the midst of the waves, God will provide His love by day and a song within me at night.

So thank you to all those who have been His hands, His feet, and shown His kindness through your thoughts, words, and deeds.  Maybe even if you didn’t know it, you’re a part of how He faithfully shows me His love by day.

I only hope I can pay it forward.  So, thank you, friends. I am truly humbled by your love.

But, before we go… there’s one last part to that verse — “a prayer to the God of my life”.

In its original language “God of my life” translates into a mighty name of God: El Hayyay. I love the names of God because there is power in them. They reflect His character.

God claims such responsibility over my life – your life – that He makes it a part of Himself. And if we know His name, we can call to Him. Because even in the rush of waves, billows, and breakers, He can hear His name.

In fact, He promises to answer.

I will set him on high, because he has known My name. He shall call upon Me, and I will answer him;

I will be with him in trouble; I will deliver him and honor him.

Psalm 91:14b-15, New King James Version

El Hayyay, God of my life.

Drowning in the waves of unknown, loss, disappointments, and sadness He is there for us to cling to: El Sali – God my Rock.

He is worthy to be trusted with our safety: El Shaddai – God Almighty.

And like calling out an S.O.S., He is in control: El Hayyay.

That is who He says He is.

He calls back to us to find Him in the deep. Since He’s claiming responsibility, there’s no fear in going into the unknown. He knows the way.

He is, after all, the One the winds and the waves obey (Mt. 8:27).

That’s all I’ve got. Thanks for reading.

P.S.: Eat something yummy today. Please.

Delayed

April 20, 2020.

My gastrectomy was scheduled for today.

Based on the key lime pie I had for breakfast, safe to say it didn’t take place.

I had everything planned. Every detail surrounding my surgery was perfectly aligned. Every possible logistic was accounted for and that made me feel in control of a very scary situation.

And…then a world pandemic.

COVID-19 has changed so much. The whole world is upside down and so many people are hurting. And for me, COVID-19 means a drastic change to a very articulated schedule. It means a loss of whatever control I (thought I) had over this uncontrollable situation.

NIH penciled me in for a new date. But, it seems like it will be pushed again.

So I will appreciate the extra time to enjoy my beloved ice cream and I will trust in one thing:

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.”

Isaiah 55:8-9 (NIV)

Stay healthy. Stay safe. Stay six feet away.

Shadows

If you haven’t noticed by now, let me clue you in… I love Grey’s Anatomy.

I will not admit the number of times I have seen seasons 1-6…mostly because I’ve lost count. I have seen every episode of every season and not too long ago, I started at Season 1: Episode 1 and went all the way through.

So, while I’m not a doctor, I kind of am.

I have seen season five, episode seventeen several times before, but as I was rewatching the series…again (y’all I really need a life), I was shocked when Dr. Bailey and Dr. Yang began treating three siblings with CDH1.

Knowing my emotional stability, I decided to forgo watching the whole episode because…well, I quickly Googled the show’s synopsis and during one of the siblings’ TG a tumor is found. Since that is one of my greatest fears about surgery, I thought it best to not reinforce my fears.

But it got me thinking.

That episode originally aired on March 12, 2009. I was a junior in college and the very last thought on my mind was “gee, maybe I have a cancer causing gene mutation”. In fact, little did I know I still had to walk through another valley or two before I even got to this gargantuan Red Sea called stomach cancer.

So, first of all, there were already people eleven years ago dealing with this issue and I was completely clueless. I mean, Grey’s usually takes highly unlikely, extremely rare diseases and circumstances (anyone remember the ferry boat or plane crash?) and hypes them up. This seems like another far fetched plot line – CDH1 patients ready to have their stomachs taken out and everyone is trying to talk them out of the surgery (including Dr. Yang!!!) because of its life altering impacts.

But here we are. Very real. Very now. Very relatable (Shonda, call me, girl).

The episode is entitled “I Will Follow You Into The Dark” and the symbolism is not lost on me. I am walking into a very dark, unknown, scary season of life and I’m asking my friends, family, and by extension you to come with me.

For the most part, people don’t know what to say. How can you? I mean, if roles were reversed and someone told me they were having their stomach removed because of a mutated gene, I’d have to ask them to repeat themselves twice and then nod on the third time because it’s rude to ask again.

It is A LOT.

It’s a lot for me and I’m dealing with it every day.

But aren’t we all dealing with something every day? Years ago, I worked with crime victims and a mentor told me “we walk amongst the wounded”. And, wow, does that resonate.

There are more of us in the dark than we know. Blinded by the intensity of our own pain, we can’t see the others lurking in the shadows of their pain even though they are right beside us.

One thing you learn on the cancer wing – pain doesn’t discriminate. And at NIH, where they are battling rare and complex and new diseases, there is far more bad news than good. One of the ladies I met at The Lodge shared with me “NIH is where the uncommon is common”. She’s not wrong. I was able to hear several different families share their story and it touched me that not only were they willing to share, but how much hope and faith they had in the doctors, in the clinical trials, and in God.

Pain doesn’t have a hierarchy because it is individual to each and every person. Your pain and problems are just as real as mine and mine are just as real as someone with even worse news than me.

And Jesus sees them all.

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart and you will find rest for your souls. For my yoke is easy and my burden light.

Matthew 11:28-30 NIV

It doesn’t say “come to me y’all (southern NIV) who have cancer” or “come to me everyone who lost a loved one” or “all the singles carrying the weight of loneliness, y’all can come over here”. It says ALL who are weary. We each have a burden worthy of setting down.

But, back to not knowing what to say to someone who may be in the thick of their darkest season while you’re standing in a bright summer season. There’s nothing perfect to say, because nothing you say can change their situation. Nothing anyone says will change the fact that I have a gene working against my very own body.

Most days, I don’t know what to say to myself. Most days, I don’t even know what to say to God. I know He hears me through my mumbling and disconnected sentences, usually paired with a few (read: countless) tears.

Words fail, but God can’t.

And He always knows just what to say. He’s the only One who can bring light into the dark places and the only One who can lead us out from the shadows.

Fear not, for I have redeemed you; I have call you by your name; You are Mine. When you pass through the waters, I will be with you; And through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you.

Isaiah 43:1-2 NKJV

Kind words, listening ears, and instead of telling someone you will pray for them, stop and ask if you can pray with them right then and there. The words you pray don’t matter, the action does. These are things to help us all get through the valleys.

If you need encouragement, give it. If you need love, give it.

Whatever you need, give it away.

Dr. Adrian Rogers