The First Cut

Well, he did it.

My dad had his stomach removed and is doing great.

His story is just that, his story and so I won’t try to articulate what he went through or how he felt. However, the following is mostly an overview of benchmark goals the first week and a breakdown of how one transitions into eating post-op. I hope this can be helpful to future NIH patients and caretakers. For everyone else, please enjoy my neurotic ramblings.

Surgery Day

The surgery lasted approximately three and a half hours, which is amazing when you think about all that had to be done. I mean, he lost an organ in the amount of time it takes someone running really fast to finish a marathon. The amount of time it takes to watch four episodes of Grey’s Anatomy. It takes less time to watch Gone With The Wind. I digress.

After he woke up from the anesthesia, he was taken from the recovery room to his private room.

The biggest accomplishment for the day, other than having an organ removed, was sitting up at a 45 degree angle. Just a note, it was advised he not go lower than 30 degrees (the beds have markers on them). He was most comfortable at a 35 degree angle.

Key points for the day: absolutely no liquids or food. Oral swabs can be approved by the doctor to keep your mouth comfortable. He woke up with a ringing headache and the doctors said that sometimes the breathing tubes used during surgery can create pressure in the ears and cause a headache.

Post-Op Day One

The first goal for day one is to be out of the bed by 7:00 AM and into the chair. Seems easy?

Sitting has never been so difficult.

But, in total, day one he spent about three hours in the chair and then due to the uncomfortable angle of the chair/ pillow combination, decided he’d rather try walking. At around 10:15 AM, he made it halfway down one hall (about 50 feet round trip). But a couple hours later, he was ready to go again and we went one lap around the 3rd NW Hallway of NIH (330 feet). His goal was to spend four separate times in the chair and to get around the hallway corridor at least twice. We followed the rules and met our goals.

Only ice could be consumed this day.

Post-Op Day Two

Day two is a big day…this is the day you get to take in clear liquids. What does that mean? It means chicken broth, tea, sugar free Jell-o. Wha-hoo! Really living the big life.

Liquid intake is limited to 60ml at a time and no more than 200ml throughout the day. Dad stuck to chicken broth throughout the day and didn’t get too wild or crazy.

We shuffled around the hallway five different times (1 lap, 2 laps, 2 laps, 3 laps, 1 lap). He easily spent time in the chair and even watched a little football. He felt better the less pain medicine he had, so they adjusted him down and he felt less “fuzzy”. Hugs not drugs, kids.

Post-Op Day Three

Drum roll please…time for full liquids. This means a protein shake! The first glimpse of real calories.

The goal is to get through an entire 325ml bottle of Premier Protein shake over the course of a day. The only problem is being limited to 60ml at a time. What does that look like? I’m so glad you asked.

It’s amazing that the first few days it can take about 10 – 20 minutes to get through the itsy bitsy medicine cups. In the future, getting down the whole 325ml in 20 minutes will be no problem. But for now…tiny sips.

With all that increased energy, Dad walked almost two miles! They also removed his fluid IV, which means getting all the protein drink down was even more important.

Post-Op Day Four

Since progress was moving along, Dad was cleared for solids.

First up was cream of rice with Benecalorie mixed into it. What is Benecalorie? Again, I’m so glad you asked.

This is Benecalorie!

Benecalorie can be added to anything you eat (shakes, mashed potatoes, oatmeal, etc.). Just like Britney was not a girl, not yet a woman…Benecalorie is not a liquid, not yet a solid. It’s a very weird consistency. However, look at what it adds! 330 calories and 7 grams of protein!

When the goal is to get as many calories and protein in at a time…this is gold.

Back to the menu. The cream of rice was less than thrilling so we moved to oatmeal with peanut butter and Benecalorie mixed in. See a pattern?

It takes about 20-30 minutes to eat a “meal” and then you have to wait 30 minutes before consuming any liquids (remember that flushing situation I described?)…then 20-30 minutes to ingest the liquids…then wait…then eat…then wait…then drink…then wait…then eat…then wait…then drink…then wait. In the middle of all that eating and waiting and drinking, add to the list getting plenty of steps in as well as chair time. It’s a full schedule!

Post-Op Day Five

Day five was more of the same as day four. The biggest difference was we found the 7th floor of NIH which has comfy chairs that are right in the sunshine and a great loop to walk around.

Dad and I were able to read in the sunshine and that made a world of a difference for both of us mentally.

Post-Op Day Six

This was a BIG day! The epidural and wound VAC were removed.

Wait, what’s a wound VAC?

Yeah, let’s go to Johns Hopkins for this one…

Vacuum-assisted closure of a wound is a type of therapy to help wounds heal. It’s also known as wound VAC. During the treatment, a device decreases air pressure on the wound. This can help the wound heal more quickly. The gases in the air around us put pressure on the surface of our bodies. A wound vacuum device removes this pressure over the area of the wound. This can help a wound heal in several ways. It can gently pull fluid from the wound over time. This can reduce swelling, and may help clean the wound and remove bacteria. A wound VAC also helps pull the edges of the wound together. And it may stimulate the growth of new tissue that helps the wound close. A wound vacuum system has several parts. A foam or gauze dressing is put directly on the wound. An adhesive film covers and seals the dressing and wound. A drainage tube leads from under the adhesive film and connects to a portable vacuum pump. This pump removes air pressure over the wound. It may does this either constantly. Or it may do it in cycles.The dressing is changed every 24 to 72 hours. During the therapy, you’ll need to carry the portable pump everywhere you go.

With the removal of the wound VAC and epidural, mobility is increased because you don’t have to tote a portable pump with you! Up until this point, the pump is placed at the bottom of your portable IV stand.

Post-Op Day Eight

Skipping ahead…day eight – Dad went home!

Isn’t that amazing? The body is a wonder.

Dad is a champ and I could not be more proud of him and his determination to smile through the entire thing.

The Lodge

I just want to take a moment to give a little insight into the caretaker’s life at NIH.

If your loved one is a patient at the NIH Clinical Center, you are eligible to stay at the Edmond J. Safra Family Lodge. Reservations must be made through your clinical program coordinator. But the benefit of staying there versus a hotel in Bethesda is you’re about a tenth of a mile from the Clinical Center. This means you’re able to stay with your loved one the most amount of time.

The Lodge is a beautiful building with nice clean rooms. There are multiple laundry rooms on site as well as a full kitchen, dining room, and living room. The kitchen is built to be communal. When you check into The Lodge, you get a basket with your room number on it. Then you can go to the grocery store (or in my case, Filomena) and store your food in your basket. There are several restaurant sized refrigerators and lots of pantry space for all your items. Anything leftover or extra can be donated to the “House Shelf” and things like mustard, ketchup, etc. are plentiful on the house shelf. There’s also an ice machine, filtered water drip, and coffee maker.

Additionally, several restaurants who have security clearance to come onto NIH’s property can deliver directly to The Lodge or Clinical Center.

I chose to go off site to get take out since once upon a time I lived in DC and craved a couple things (like linguine cardinale and tiramisu). But there are options for days!

In Summary

This post was kind of boring…but hopefully somewhat informative.

I don’t know about you, but I’m going to go drink a gallon of water while I can. Appreciate the little things.

Pre/post Op Diet

Let’s get an important item out of the way.

What am I going to eat?

Honestly, right now…every. thing.

My mantra is currently “eat everything yummy, while you still have a tummy”.

Everyone is different and each person’s body responds differently to food types post-op. For some, diets post-op can include dairy, sweets, raw fruit, salad, and fried food. Others not so much. I don’t know what I will be able to handle. But it is hard to imagine a life without those things. So I am eating them all while I can.

I will have to do a lot of trial runs on what I can handle. But, let me be clear on this, I won’t require a bag, feeding tube, etc.

I know, it’s crazy. They are going to remove one heck of an organ and I’m just going to go on living? The body is amazing. Let’s look at a visual showcasing the digestive system before and post surgery.

Right, so, that helps…yeah? The esophagus is reconnected to the small intestine, which is the organ tasked with picking up the slack from the loss of the stomach. So…that’s cool? But, how does it work?

Remember, I’m not a doctor so the best way I’ve thought of to explain this is: your stomach is a salesman working on commission. It will do whatever it can to make you happy…”you want that extra dessert? heck yeah, let’s go for it”. It will stretch and give you the capacity to let you indulge. It is all in and excited for gluttony. Your small intestine is on salary and gets paid for showing up.

So, the first change will be the amount of food I’ll be able to take in at a time. But, in order to get enough calories in I will focus on high protein, high calorie foods. Frequently. Look back at the post-op photo – that little pink tube is the sum space I will have to host food and it will be a hard stop when it is full. So it will be figuring out how many calories in the least amount of space.

In a way, it’s a game. I’m nothing if not competitive.

But the stomach isn’t just responsible for storing food. It also has a big job of grinding up food and acting as a valve. That means, I will have to start chewing my food for a very long time before swallowing since there will not be help to break down the morsels before they reach the intestines. Learned habit, but not the end of the world.

The stomach also regulates what goes into the small intestine and the pace at which it is admitted. That means, I’m also going to have to monitor when I eat versus when I drink. I can’t do both at the same time without creating a flushing situation (so cute, I know. I can’t believe I’m single).

So, what am I going to eat post-op? I’m not entirely sure. But, I’ll definitely find out quickly what’s OK and what’s not!

For now…you can find me eating dessert (or maybe two) at every single meal.

Basically a Mermaid

Right, so where do we go from here? Honestly, I don’t know.

I’m guessing you have a lot of questions. I do, too. Feel free to leave your questions in the comments…I’m not fragile and I’m not offended by questions. Unless they are rude. Please don’t be rude.

“How are you feeling?”…I get this one a lot. Physically, I don’t feel any pain. I’m asymptomatic. In fact, stomach cancer is such a silent killer because you don’t exhibit symptoms until…well, until it is too late. So, it’s very good that I’m not feeling any pain. Emotionally?

I’m fine.

I’m fine most days.

I’m fine most of the time.

I’m fine.

Let’s be real – I’m a ticking time bomb. Both physically and emotionally.

I cry, a lot.

But, like a good Southern girl, I do it in the privacy of my shower or on the phone with my mom. There were several weeks where apart from the hours I spent at work, I was crying. It’s a lot to take in. My body is betraying me.

My body that I spend countless hours exercising, primping, grooming. My body that I fill with organic fruits and vegetables. I don’t drink. I don’t smoke. I don’t use drugs.

OK, let’s check my heart – I eat a lot of sugar. I’m not perfect. But, I feel like I have held up my end of the bargain. This is something so completely out of my control, something that can not be adjusted with eating healthy or doing 100 burpees (like I’d ever, ha).

So yeah, I feel betrayed. I’m sad. I’m angry. I’m scared. I’m actually really scared.

But, I am also thankful.

I have met some incredible people through this process. When I first learned about the gene mutation, I did a search on Instagram for “#CDH1” and found a young lady who looked about my age and had a Bible verse in one of her photo captions. I sent her a DM and she not only wrote me back, but shared her whole story with me. She invited me into her life not only as someone who was going through the same thing, but as a friend and someone to walk this path alongside.

Angels, y’all. They are real.

I have an amazing support system, without whom I could not get through the day.

The company I work for is beyond what I could hope or dream. They are understanding and compassionate towards my situation. What an immense blessing.

My family. I am not the only one in my family with this gene mutation and while I wouldn’t wish this on anyone, I have the immediate support of blood relatives fighting the same struggles. My Dad, for instance.

I hate flying. I do it only for the convenience, but I don’t enjoy anything about the process. Especially turbulence. I am the person who jumps and flinches. I should really be sedated. When I’m nervous, I always look at the flight attendants. They work through the bumps and turns. It’s only when the pilot comes on and tells them to take their seat do they stop what they are doing…and that is when I really start to worry.

My Dad is like the pilot. He is calm and steady. He’s not worried, nor is he afraid. When I start to feel afraid, I look at him and how assured he is. No need to sit down and buckle up. Just keep working through the bumps and eventually we will reach clear skies. In my immediate family, it is just the two of us who have the gene…I always knew I was a chip off the block but this is at a different level.

Finally and most importantly, the greatest gift that comes with this challenge is the opportunity for God to show off and for others to see Him through my affliction.

How can I say that? That seems a little holier art thou, yeah? Oh, for sure. Let me be crystal clear – I have been very upset with God lately…and I have told Him. I have stomped my feet and shaken my fists at heaven. I have yelled and growled in anguish. He’s big enough to take it.

This isn’t my first valley to walk through. You aren’t here for that story, so I’ll save you the details. Let’s just summarize and say, it was bad. And, I was arrogant enough to believe that I had already had my share of grief, that my time was coming, that my mountain top experience was just around the corner. And yet…here we are.

But let me tell you what I learned in the last valley – God. Always. Shows. Up.

Even if it seems like the very last moment.

Faithfulness is part of who God is. It is His character. He can’t not be faithful. It’s impossible. When, in the past, I was so weak and barely had the willpower to get out of bed, I’d smart-off to God “if you want me to get up this morning, you are going to have to physically come down from Heaven and move my feet for me”. And, He did. Now, I’m not saying I had a physical face-to-face with God every morning. But, He showed up and He got me through the day.

Because of that experience, I can stand here today, still wandering through the valleys and say without sarcasm – I’m fine. Even though I am mad, scared, and totally bummed out. I am fine.

God will show up. He will show off. None of this is a surprise to Him. This isn’t throwing His plan off course. He’s been ready for this since before the world was formed. Take a minute, let that soak in.

Lord, you are my God;

    I will exalt you and praise your name,

for in perfect faithfulness

    you have done wonderful things,

    things planned long ago.

Isaiah 25:1 (NIV)

We all have our own struggles and personal valleys. Whatever you’re walking through, whatever pain you’re feeling, and no matter how oppressive the darkness feels let me encourage you that even if it’s not today, not tomorrow, or the next day – things will get better.

One of my favorite work-out classes is called Tabata. If you’re unfamiliar, it’s 7 sets and each set is 8 rounds of 20 seconds all out, 10 seconds rest. It is brutal and pushes me physically and mentally. The most amazing coach teaches this class and he always says “you may have {7,6,5} rounds left to go, but you only have one right in front of you”. Whoa. How applicable not only in the gym, but in life? All you can do is what’s in front of you in that moment. And then look back in amazement of what you were able to accomplish. Thanks, Ramey.

All I can currently do is prepare myself for surgery physically, emotionally, and spiritually. The surgery will come. The recovery will come. The new normal will come.

But, it’s not today.

Today I hope I can encourage you with my testimony. Today I can tell you that despite the affliction I feel, I also continue to be comforted by two nail pierced hands.

If you’re walking through your first valley and can’t get a foothold into God’s faithfulness…if you’re like, hey that’s nice, but I haven’t seen Him show up for me before… just look to the cross, my friend. Before you even knew you needed Him, He was already taking care of you. If that isn’t faithfulness, I don’t know what is.

I’m not saying it is easy. For me, it isn’t even daily. For me, it is a moment by moment decision to continually, tearfully, and joyfully lay down my burden at the foot of the cross. I fail…all the time. But every time I drag my burdens and mistakes to Calvary, I am met with wide stretched arms. There’s room at the foot of the cross for every burden and the blood of Jesus washes them away.

Mercy. Grace. Love. That’s Jesus.

Hallelujah, praise the One who set me free

Hallelujah, death has lost its grip on me

You have broken every chain

There’s salvation in Your name

Jesus Christ, my living hope

Living Hope, Phil Wickham

This has been pretty heavy, yeah? So why don’t we leave each other today on a light note?

Fun fact…seahorses do not have stomachs! Seriously. Google it. It’s become a mascot of sorts for the CDH1 gene mutation community.

So really…this is just getting me one step closer to being a mermaid.

Soon, I’ll be *part of that world* (get it?)

If you’ve ever seen Elder Millennial by Iliza: “Je Suis Mermaid”

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

2 Corinthians 1:3-4 (NIV)

Just a Virgo, Not Cancer

“So do you have cancer or not?”

This is an actual question asked of me. While the question’s lack of sensitivity is shocking, the question is not. Here’s the answer…I don’t know. The doctors don’t know. And they won’t know until they take my stomach out.

Remember last time I mentioned biopsies? Well, back in August I went to NIH and had an Esophagogastroduodenoscopy (EDG).

During the EDG, the doctors took 88 sample biopsies from my stomach. I’m going to take a moment and explain the whole process. For those of you who might be preparing for your EDG and want some insight, this is for you…those of you who won’t be having this procedure, I won’t blame you for skimming down to the bottom (but feel free to read along anyway!)

I had my EDG completed at NIH in Bethesda, Maryland. I was scheduled for a Wednesday morning appointment so I arrived to Washington, DC on Tuesday evening.

My first appointment was scheduled for 10:00 AM. I arrived to NIH via the DC Metro around 8:45 AM. The metro stop for NIH lets you out directly in front of the main security entrance, so it is definitely the most convenient way to arrive. The first step at NIH is making it through security. First, you walk through a metal detector and scan your bags. Much like TSA pre-check, you can keep your shoes on.

Next, I stood in line to meet with an agent who could print a security badge. When it was my turn, I set down the book I was carrying – Victory in Spiritual Warfare by Dr. Tony Evans- to retrieve my license. The guard was so kind and asked me questions about the book. He and I talked about Dr. Evans and Jesus for a few minutes before he wished me the best of luck that day. A great way to start the morning!

I was ahead of schedule, arriving to admissions around 9:30 AM. I received a laminated yellow number and a small stack of basic paperwork to work on until my number was called. Once it was my turn, an admissions professional took me back to fill out more details via her computer and to sign different waivers and approvals. She printed my wristband and gave me an NIH welcome package, which included: a map, NIH booklet, and information on how to download the NIH app. I’d strongly recommend downloading the app!

NIH Security Entrance

Next up…Phlembotomy. Oh, joy. Helpful tip: they will ask for all kinds of samples…so, hydrate! I’ll leave it at that. They took enough blood to fill about 12 small vials. The woman who drew my blood was very gentle and kind and encouraged me once again how God has a plan. Jesus really showed up for me that day. He put people in my path to reassure me when I needed Him most.

After I felt stable enough to stand back up, I was sent to radiology for an EKG and chest X-ray. Not to brag…but they told me I have a perfect heart. That is for sure going on my dating app profile.

I quickly finished my EKG and X-ray and had time to grab a snack before I headed to Pre-Anesthesia. I wish that instead of a Diet Snapple I had just had water. It’s a marathon of a day and I should have been smarter about my hydration. During the appointment with Pre-Anesthesia, they go over all test results from that morning and take a few more vitals. They broadly go over how long the surgery will last and what to expect.

The largest chunk of my day was meeting with the oncology/ research team. Dr. Davis, Amynah, Grace, the fellow on call, and Rachel all met with me (if you are going through NIH, you should know these names well!). They were all incredibly knowledgeable and helpful. This is their world every single day and it was very comforting how confident they are in their facts. They are absolutely brilliant and took the time to answer all my questions. My conversation with Rachel, the nutritionist/dietitian, was the most applicable. More on that discussion later.

By the time the conversations were over, my dad had arrived. For those of you wondering if you need someone traveling with you…I don’t feel like I needed someone with me that first day. Everyone is different. However, there just wasn’t a lot my dad could have done other than walk through the hospital with me. That being said, they will not admit you for surgery unless you have someone to take you home post-op, so I definitely needed him on the surgery date.

The final step in this very long day was to get a breast MRI with contrast. The CDH1 mutation also puts me at somewhere near (no one can agree on percentages) 50% more likely to get breast cancer…specifically in the milk-producing glands. This is called lobular breast cancer. At some point, I will have to also consider having a double mastectomy and reconstruction. But, how about we remove one body part at a time?

K, thanks.

I arrived for the MRI without an IV and so had to rush to a different department to get hooked up with a blank IV. I have teeny tiny veins which means getting hooked up is hard because it takes several tries to get into a vein. Good times.

The MRI itself was my least favorite part of the whole day. I am claustrophobic and also have anxiety. Perfect recipe for a closed MRI. The woman who took my scan, Reese, was very kind. She got me onto the bed (face down) and adjusted me. The upside: I now know what a cow feels like. Then she sent me in to the giant tube. Once I was in, she handed me an emergency button to squeeze if I needed out. I really, really, really wanted to squeeze that button.

I was told it would take approximately twenty minutes. So, I started counting. About halfway through, she told me that she was going to take me out. PHEW!! I must be really bad at math or count super slow! It was then Reese told me that the machine was giving very jumpy images even though I was being perfectly still. So, we went to another machine. I was near tears as it had been a marathon of a day being poked, prodded, and emotionally taxing. But, I knew I had to do it.

The noise from the MRI was deafening. There’s a song by Sanctus Real called “Confidence”. I had been listening to it on the plane the day before and while I couldn’t remember all the lyrics, I could recall the first verse and chorus and sang it over and over and over (in my head, I didn’t want to torture Reese) until the MRI was done. Ladies, I would highly suggest preparing what you are going to think about during the MRI. I almost pressed the emergency button, but talked myself into staying since I’d just have to start all over.

“I’m not a warrior. I’m too afraid to lose. I feel unqualified for what you’re calling me to. But Lord with your strength, I’ve got no excuse Cause broken people are exactly who you use.

So give me faith like Daniel in the lion’s den. Give me hope like Moses in the wilderness. Give me a heart like David, Lord be my defense. So I can face my giants with confidence.”

Sanctus Real, Confidence

Finally, it was over. My dad and I left the hospital and grabbed something to eat. I asked the doctors if I should avoid certain foods the night before, but was only steered away from salad. So, we had street tacos! I had shrimp and Mahi Mahi tacos with a little bit of seasoned rice as a side. It was fairly light. Then we walked about four miles. I was so anxious that I could have walked another four miles. Biggest stress point: nothing to eat or drink after midnight!

My surgery was scheduled for 7:00 AM. We left our hotel in Dupont Circle around 5:45 AM and took the metro for 30 minutes to NIH. Going through security, I had the same agent as the day before and I was excited to be able to give him my copy of Dr. Evans book. I believe we walk among angels and he had been there for me the previous day and now it was my turn to give back to him. He probably won’t ever realize how much his encouragement meant to me that morning.

Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it.

Hebrews 13:2

Dad and I walked from the security gate to the main clinic (about 7 minutes) and then through the hospital to the surgical waiting room. We arrived around 6:45 AM. They took me back a little after 7:00 AM.

First, they had me get into my gown and place all personal effects in a bag. They took my vitals once again. I was helped into a bed and at that point my dad was allowed to sit with me. The doctors came around and went over the procedure one more time, confirmed my birth date and that I was really me! The anesthesiologist appeared and she talked me through the process as she was inserting my IV. I was starting to get very nervous so I was more than open to the happy drugs! I don’t drink or smoke so I am very sensitive. By the time they rolled me back, I was feeling just fine.

Before they put the mask on my face to whisk me off to dreamland, they had me adjust myself onto my left side with a pillow between my knees and a pillow under my right arm. One deep breath, forty-five minutes, and eighty-eight biopsies later, surgery was over. An hour after that, I came out of anesthesia. By 10:00 AM, I was leaving the hospital. They wheeled me to the front door and sent me on my way.

Dad and I walked to one of my favorite spots in DC, Founding Farmers. I was still very much out of it, but was able to take down some mashed potatoes. I could feel the holes in my stomach which provided a very strange sensation. I flew back home that night.

While I was waiting at the airport the woman sitting next to me started conversation and I told her why I was in DC (anesthesia has a great way of pulling your walls down). She and her husband were headed to Denver and before she left for her flight wrote her information down if I ever needed anything whilst in DC again. She included the encouragement “you’ve got this”.

Angels. They are all around us.

I went back to work that next day. I felt very nauseous and on Saturday (two days post-op), I called the hospital to ask if the extreme nausea was normal. They said I may have some leaking and that it would normalize. I took a couple anti-nausea pills and the feeling passed by the next week.

OK – if you skipped the NIH details, here’s where you’d want to pick back up.

Three weeks post-op I received a call from NIH saying that they did not find signet rings on the sample selection. YAY…right? Well, it’s a bit of a false sense of security. Remember from last time we visited? Dr. Davis said they only find signet rings 40% of the time.

The most common story I hear: biopsies come back negative, but a positive pathology is found after a TG. The stomach is HUGE and this cancer is a sneaky little thing.

I can probably guess what you are thinking…why have the biopsies if they don’t tell you anything definitive? Great question! I also asked it. Well, it’s the best gauge they currently have.

So, do I have cancer or not? I don’t know. I don’t have cancer in the samples they pulled…however, the cancer could be one cell over and was missed in the sample. That’s how sneaky this cancer is. But there is a 90% chance I do have it.

There will be a 0% chance that I have it post-TG.

Start At The Beginning

I am not a blogger. I am not an influencer. I am barely a millennial. But, I have been presented with a very unique situation and am starting this written chronicle for a couple reasons.

First, when I received my diagnosis, I scoured the internet for others like me. I appreciate that strangers allowed me to have a peek into their life so that I could make sense of what was going on in my own. Also, beyond my diagnosis, I know what real pain and grief feel like. It is my hope that if you’re hurting with any ailment (physical or emotional), you can find a friend here. You are not alone.

Finally, isn’t this what we do now? We share our unaltered, unfiltered, uninhibited thoughts with all the world on a permanent platform like this?

See, told you. I’m not a real millennial…I’m not using a filter.

Where should we start? I guess introductions are in order. My name is Kathryn and at thirty years old, I was told that my health depends on having my complete stomach removed.

Go back. Read that again.

Yep. My WHOLE stomach. Now, I know you probably have a lot of questions (what will you eat, how will you exists…etc.) and I will try to be as detailed as possible with the knowledge I have. But let’s first get a little bit of history. After all, having one’s stomach removed seems a *little* dramatic.

My paternal great-grandmother and grandmother both passed away very early in life. We are talking 30s and 40s. With genetic testing gaining traction, my dad’s twin sister sought the counsel of a geneticist who informed her that we carry a mutation to our CDH1 gene.

I’m sorry, what?

Stick with me for a minute. Oh, but wait. First, a disclaimer. I am not a doctor, I have absolutely no medical training (other than 15 seasons of Grey’s Anatomy), and should not be seen as a medical resource. I will share what the doctors have told me and what I have researched…but y’all…I barely understand this all myself. I will always cite where I find my information versus an original analogy.

Now that we have that out of the way, it’s back to business. The CDH1 gene, when functioning normally, leads the charge on the body’s formation of a protein named E-cadherin. Yeah, I know…this is some fun stuff. Instead of me trying to explain it, here is how the National Institute of Health (NIH) describes this protein.

E-cadherin is one of the best-understood cadherin proteins. In addition to its role in cell adhesion, E-cadherin is involved in transmitting chemical signals within cells, controlling cell maturation and movement, and regulating the activity of certain genes. Interactions between the E-cadherin and p120-catenin proteins, in particular, are thought to be important for normal development of the head and face (craniofacial development), including the eyelids and teeth. E-cadherin also acts as a tumor suppressor protein, which means it prevents cells from growing and dividing too rapidly or in an uncontrolled way.

Still with me? Just checking. Even I dozed off there for a minute. OK, so that last line is really important. Basically the formation of this protein helps the body’s ability to prevent cells from going rogue and causing tumors. So that’s a good thing! Thank your body for the CDH1 gene. I’ll wait.

But what happens when that gene forms a mutation? What happens when it gets a little wild and crazy? Well, it’s not good. A mutated CDH1 gene can lead to Hereditary Diffuse Gastric Cancer (HDGC). Great, another acronym! Let’s go back to NIH for more details. Over to you, NIH…

The mutations that cause HDGC often lead to the production of an abnormally short, nonfunctional version of the E-cadherin protein or lead to the production of a protein with an altered structure. The loss of normal E-cadherin prevents it from acting as a tumor suppressor, contributing to the uncontrollable growth and division of cells. A lack of E-cadherin impairs cell adhesion, increasing the likelihood that cancer cells will invade the stomach wall and small clusters of cancer cells will metastasize into nearby tissues. In combination, the inherited and somatic mutations lead to a lack of functional E-cadherin and result in HDGC.

You got that, right?

Basically, my body lacks the proper leadership for the E-cadherin to know what it is supposed to do and starts to form cancerous cells in the stomach wall lining, which form in the shape of signet rings. And then they sit there. And sit there. And sit there. And then…POUNCE. Diffuse. Whooooosh through the whole stomach lining and you’re looking at Stage IV stomach cancer. What makes it pounce? No one knows yet. Awesome.

Whoa. We just went from talking about protein to cancer a little too quickly. I know, it’s shocking to me, too. The community can’t really agree on the percentages, but Dr. Davis at NIH described it to me like this: having this mutation puts me at a 90% chance of being at Stage 1A HDGC and they only find the Stage 1A on biopsies 40% of the time. Forty percent of the time??? Well, that’s comforting. More on the biopsies later…this is after all, just the first post.

Here is where it gets fuzzy. Out of that 90% chance of being at Stage 1A, there is anywhere from an 80% to 56% likelihood of it becoming malignant and quickly enter into Stage 2…3…4…and scene. 80% is definitely worse than 56%, but really neither is excellent. The only way to prevent this type of cancer is to have the organ it attacks taken out. You can’t get stomach cancer if you don’t have a stomach.

I asked Dr. Davis, “I have relatives who are in their 60s and have not had an issue, why can’t I wait until I am their age to have the total gastrectomy (TG)?” He basically told me that is an option and my choice. However, they do not know what triggers the cells to become malignant and aggressive. They will not know that for at least another generation. I could live until I am 85, die of natural causes and never be the wiser. OR…and this is a big one…OR, it could trigger in the next year…two years and if that happens, “we can not cure it, we can not catch it”.

Well that…that’s hard to digest.