Since we last visited, I placed the final piece of the CDH1 puzzle and had my double mastectomy. So here is the last installment of this tale. The series finale, if you will.

Mastectomy feels more personal, more vulnerable, and more intimate to discuss. However, I promised myself at the beginning of this journey that if I could help just one other person by telling my story, I would. So for the three of you who read this (hi, Grandmother), here we go.

Let’s talk about my mastectomy and two-year TG checkup…a two-for-one. Which is a perfect segue…

August 9, 2022, was supposed to be a routine annual check-up at the gynecologist.

I was preparing for my two-year check-up at NIH and needed to send an updated mammogram so the team could schedule a breast MRI during my visit.

I had a small place on my right breast that was…I hate to say concerning…but it was something to watch. Every MRI and ultrasound picked up that it was extremely dense but was probably just calcified oil ducts or scar tissue from my implants (2010) or explant and lift (2018). 

During the breast exam, I asked Dr. Coronado if she would double-check the right side because my small place had now become a medium place and I could feel it during my self-exams. 

Ladies, do your self-exams. Know what is normal and abnormal for your body. K? K. That’s my soapbox for the day. 

Dr. C gave me some tough love. She asked what was standing between me and having the double mastectomy (DMX). I didn’t have a good answer. In my mind, I wanted to get married, have kids, and proceed with surgery in my early 40s. Great plan, right? Right.

Plot twist.

I did a lot of research when I found out about CDH1 so Dr. C helped get me on the schedules of my preferred breast surgeon and plastic surgeon for consultations. By August 11, I had my DMX scheduled for October.

No waiting. Let’s do this. 

Mastectomy/ reconstruction requires two surgeons. First, there’s the breast surgeon who makes the cut and removes all the breast tissue. Then a plastic surgeon comes in to put everything back together. I had a great team and am so grateful for Dr. Anglin (breast surgeon) and Dr. Meade (plastic surgeon).

There are so many decisions to be made surrounding reconstruction: 

• immediate or delayed reconstruction? 
• direct to implant or expanders?
• DIEP flap or flat?
• over the muscle or under the muscle? 

It was overwhelming.

I decided I wanted to proceed with immediate reconstruction and direct to implant (DTI).

A lot of plastic surgeons prefer to do expanders. Expanders are deflated little balloons with tags that are sewn into the muscle. Over the course of about three months, the doctor fills the expanders and allows the skin to stretch, relax, and mold to the new desired size. After the patient reaches their preferred size, there is a second surgery to remove the expanders and insert an implant. Expanders, in theory, allow the doctor to all but guarantee perfect symmetry. It’s a valid benefit.

During DTI, a piece of medical mesh is sewn into the muscle and wrapped around an implant to create a cocoon for the implant to sit in. The body is traumatized from the mastectomy so DTI can sometimes bring symmetry errors. 

I pleaded with Dr. Meade to do DTI because I simply could not fathom having to go through expanders and then yet another surgery. He agreed and said we could always do a revision in a few years.

Phew. I need a deep breath, how about you? 

October 11, 2022, came fast. I checked into the hospital, dressed in the super fashionable gown, and the IV was placed. I was very concerned about anesthesia and having tubes down my throat since post-TG I am pieced together differently. Dr. Davis and Rachael provided a letter to my doctors explaining my needs as a TG patient. They are the best. 

The anesthesiologist gave me a little something-something to relax me. I’m told I was cracking everyone (maybe just myself) up. I woke up about four hours later with a new chest. 

There were internal stitches, exterior stitches, gauze, and a sponge. All of that was wrapped in plastic around my whole chest and then sealed tightly with a wound vac. Protecting the wound vac was a breast binder. I had four drains coming from the top of each side of my rib cage and the drains were pinned to the binder. It was quite the get-up. 

The drains would have to stay for as long as it took my output to reach less than a collective 30ml over the course of two consecutive 24 hours. The wound vac and external stitches would remain for 14 days. It would only be after everything was removed that I would be allowed to shower. 

If you know me, you know I love cleanliness… so this was a battle for me. 

Ok, back to the original narrative. I stayed one night in the hospital and then my parents took me to an AirBnb for two and a half weeks to help me while I did the bulk of my healing. 

My pain post-TG was bad but I never took an opioid. My pain post-DMX was much worse and I took Tramadol to help me sleep at night. I tried the prescribed muscle relaxer and it just made me irritable and not like myself. 

I had so many cords coming out of me. The four drains along with the cords and battery pack from the wound vac made it exhausting to move. My mom would get me to stand and shuffle around in 15-minute increments. I didn’t feel like doing anything. I was having a hard time eating. I just wanted to sit and be still. 

The first seven days finally passed and it was time for my check-up at Dr. Meade’s office. I was really hopeful that my drains could come out since I had minimal output. The plastic keeping everything sealed to my body was really itchy and my skin was clearly having a reaction so I was excited about the potential for relief.

Praise God from whom all blessings flow – the plastic came off, the drains came out, and despite the fact that my skin had blistered underneath the plastic…I was free. 

I was down to just wearing a surgical bra and binder.

But, then some new redness popped up. I sent photos to Dr. Meade who called in two antibiotics: Clindamycin and Bactrim. The Clindamycin made me very nauseous so I stopped taking it and continued with only the Bactrim. Bactrim is a sulfa-based antibiotic…just keep that in mind for later. 

At the two-week mark, the external stitches were removed and 48 hours later I was allowed to shower.

The joy. The absolute joy.

I was so happy to be home. I was finishing up my last few pills of Bactrim, looking forward to being able to drive myself at week three, and thrilled to start lifting my arms above my head.

P.S. They recommend waiting until week three to drive because a sharp turn or sudden movement could cause some damage. Ouch.

Then I woke up with a rash. Like, a bad rash. Apparently, first-time sulfa users (me) can take up to 8-10 days to exhibit a reaction. Wouldn’t you know, it had been 8 days since I first started Bactrim?? I took Benadryl. The next morning, it was worse. My arms and legs were covered in welts. It spread to my face. The parts of me not covered in welts were covered in hives.

Never looked better. 

It was a Sunday so I called Dr. Meade’s practice and got the on-call doctor. He was worried I might have something called Stevens-Johnson Syndrome and told me to go immediately to the ER – specifically an ER with a burn unit.  

When I checked into the ER (and handed my license over) I was incorrectly admitted as “Kathryn Crow, DOB 09/23/1988″…that’s…I mean, good try. Before we could move forward with tests, they had to verify there was not another Kathryn Crow in the hospital and have me prove I was *not* Kathryn Crow.

Finally the (two sets of) blood they took ruled out Stevens-Johnson Syndrome. Six hours later, their remedy was “Benadryl and time”. I asked if I could at least have a bag of fluids. Might as well be hydrated…

Dr. Meade was so helpful. I sent him daily photos for monitoring and about a week later the rash was gone. I have delicate skin. When I saw Dr. Meade in person at my four-week check-up he said, “oh, is the rash still there? I can see a little redness.” Nope. Those are my veins. “Translucent” is the word we’re searching for here.

And that’s it. I go back in February to make sure the implants are “fluffing and falling” properly and I hope to start strength training again soon. 

Oh my gosh, are you still there? That was long. 

Oh, one more thing. The pathology report? The place on my right breast was absolutely nothing. There was, however, a tumor growing in my left lobules…which happens to be the part of the breast that CDH1 attacks. It was still benign. Out of all the MRI and ultrasounds I’ve had, there was never any indication that the left side had anything going on. I am so grateful Dr. C advocated for me.

Also, let it stand as a reminder that sometimes God uses one thing to get our attention because He wants to show us something hidden. 

The good news is my two-year check-up at NIH was simple. Bloodwork looked great. My Vitamin D was normal. I rebounded 4% bone density in my hips (yay!) but lost 1% in my spine (boo). That’s something to work on. 

I have mostly normal days and very limited bile. I am getting more adventurous and sophisticated with what I eat. My brain has caught on to what most of my hunger signals are and I’m just…living. 

I found out about CDH1 in April 2019. The idea of TG and DMX was like starting at the base of Mt. Kilimanjaro. It was overwhelming and daunting. It looked like a million steps to the top and I wanted to race all the way. There were parts of the trail that were easy and the sun was shining. Parts with horrible thunderstorms and each step felt like a mile. In some parts, friends walked and talked with me to pass the time, and in others, I needed to walk alone. 

I used to think I had to make it to the summit in order to see “the goodness of God in the land of the living”(Psalm 27:13). It has taken me almost four years (I’m a slow learner) to realize there is no greater goodness God can provide than a glimpse of His heart. He has been teaching me how to look for Him with every step of this journey. 

CDH1 has forced me to be still. It has forced me to listen for His heartbeat. It has forced me to abandon my own strength. 

So, I am grateful. I am grateful for my little mutated gene. I am grateful I had to experience such a bizarre and intense loss because what I gained is worth so much more. When God knit me together He specifically chose for me to have this gene. He placed it. He saw that it was good and He saw that this was the best way for me “to grasp how wide and long and high and deep is the love of Christ” (Ephesians 3:18). 

And I am grateful to you for coming on this journey with me. What a ride it has been. 

Love you, bye. 

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 the 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 a 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, a 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 of coffee, 1 cup of 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 Quaker’s “Lower Sugar” Maple & Brown Sugar or 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 leisurely 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.

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, a 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, and your yogurt of choice. I use Bulgarian Yogurt mostly because it (1) has a long shelf life (2) is 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.

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.

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 in my intestines or before a workout in the evenings.

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 when 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 takeout 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 flavors!

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 that 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 its 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.

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 of 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!

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 of 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 by 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 halfway.

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.

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 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 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”

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 hoping to absorb them through staring. 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. Afterward, 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 firstborn 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 are 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, and now they are hungry. They complain. Why did God take them out of Egypt to starve? You see a pattern, yeah? 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 that 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 normally (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. 

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 a 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 in the mix.

Dessert

Before surgery, I would order whole key lime pies and eat them 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 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 aid 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 goodbye. 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. Waiting for the command telling 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.

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.

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. Over time, 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 it 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 and 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 hungry. 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 this 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.

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 at 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 to 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 to 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. The epidural was next. 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 that 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 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 the 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 am 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 hips 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 so around 6:30, the nurse got me out of bed and into a chair. Ouch! They did surgery right into those top abs, so any assistance my abs may have previously provided 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 by 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 it’s 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 night 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 which 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 a great Sunday. Selina just brought me a heating 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, and sent flowers, texts, and memes over Instagram…thank you. 

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

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.