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.
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.
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.
If you’ve read my other posts you’ll remember how much I loathe the breast MRI. I mean, I would almost rather go ahead and have the double mastectomy just to avoid more MRIs. For those of you who missed my dramatic recount of the last MRI, allow me to catch you up to speed.
For the breast MRI, they lay you flat on your abdomen, pull your breasts through an open slate – not unlike a cow being milked – and then roll you into the tiny tube of torture.
But don’t worry! They give you a mouse mirror so you can see the outside world. Then the offensive noises kick into gear. For a person who gets anxious quite easily, hates being out of control, and is also claustrophobic – this is pretty much as bad as it gets.
Thankfully, I had a wonderful technician who offered to turn the lights off and she put a fan on me…and my doctor prescribed me a small dose of a little something to take the edge off. As soon as the technician got me…situated…I sealed my eyelids and didn’t open them until the thirty minutes were over and done.
The results were pretty much the same. I have one spot that was slightly concerning in 2019, but after an ultrasound in 2020 they decided it was not scary. It is most likely a small calcified oil duct. It’s still there but hasn’t grown so we (by “we” I mean the doctors and all my Grey’s Anatomy experience) feel comfortable waiting one more year.
CHD1 puts me at a more than 50% chance of getting lobular breast cancer. I will eventually do a double mastectomy and reconstruction…just not this year.
Honestly I don’t have it in me for another surgery right now. Not physically, mentally, spiritually, or otherwise. Maybe next year.
Dr. Davis & Rachael
Dr. Davis said my scar healed nicely. The super competitive and vain part of me struck a pose and I wanted to ask if it was one of the best scars he’s seen. But, I resisted.
I can convince myself that I have any side effects or symptoms. When I have a headache, I automatically assume it is an aneurysm. I think I’ve told this story so many times it’s no longer funny but when I was in the hospital, I was convinced my spleen was going to rupture. I had an intense pain where (I thought) my spleen was. Every time the doctor would come in for rounds, I’d ask him or one of his fellows “are you sure I don’t need a scan on my spleen”. Finally, one of the fellows broke it to me, “that’s not where your spleen is”. Well, maybe I have a traveling spleen? Have you ever thought of that???
Turns out it was nerve pain and went away after two weeks.
One of my big fears is getting a hernia…which, in my defense is a high risk post-op. I’m a fairly delicate creature to begin with so I wanted to hear from Dr. Davis exactly what my limits are: will lifting a container of water bottles give me a hernia? Can I do deadlifts in the gym (you know, with my 10 pound weights)? I need some guidelines.
Dr. Davis described it like this: imagine someone punched a hole in a wall. You patch it up, paint over it and it looks the same but you’re never going to want to hang a heavy photo in that spot. He said I probably wouldn’t ever be lifting things that would be heavy enough to cause a hernia. I still proceed cautiously…what else is new?
My time with Rachael is always valuable. She takes so much time to understand what I’m eating, when I’m eating it, and how those two things impact how I feel throughout the day. My level of dehydration was the big takeaway. When we really measured we concluded that I was maybe getting 16-24 ounces of liquid a day. Which is just not enough.
Plain water makes me nauseous most of the time; anything bigger than a sip gets “caught” in my throat; cold drinks make me nauseous in the morning but not in the afternoon; chewing ice feels like needles; I don’t like flavored water or bone broth; anything with Stevia or other artificial sweeteners makes me shake; Liquid IV is too sugary for me.
I have had so many negative reactions that I end up just looking at my beverages and hope to absorb them through osmosis. The only plain water I can get down has to have a high pH level: SmartWater, Essentia, etc. Those tend to do better and if it’s the evening, they don’t create as much nausea. Like I said, I’m a delicate creature.
Being the angel and great supporter that she is, Rachael encouraged me that this is not a failure but an opportunity to do better. Before I left NIH, they gave me a bag of fluid via IV. Afterwards, I felt like an Olympian. It was the first time since before surgery that I was fully hydrated.
Before surgery, I would drink at least 32oz of water while I was getting ready for work then drink another 80oz throughout the day. The lack of water has been the largest change for me. Fortunately, I live in a large metropolitan area and there are IV spas. I can sit in a massage chair while they give me a bag of saline. I don’t get any vitamins added to my saline since I take my multivitamin every day (humble brag) and don’t want to throw off any of my levels. I am a brand new person when I leave.
Ok, now you know I have to overshare about how this is all going emotionally.
One of my favorite questions to ask my friends is: who in the Bible do you relate to the very most?
I’d love to see myself in Moses being a great oracle for El Shaddai; or Ruth being steadfast in her faith and diligent in her work; oh to be Peter! Having the faith to climb out of the boat and onto the waves. But, if we are being really *really* honest with each other. And we are friends, so I’ll be honest. Most days you can find me in Exodus – just one of the Israelites wandering around the desert complaining, groaning, asking “why, O Lord!”.
If you aren’t familiar with their Exodus story, I will quickly bring you up to speed. The Israelites were enslaved in Egypt for 400 years. Moses showed up. Moses asked Pharaoh to let them go. Pharaoh says no. Repetitively. God sends frogs, darkness, gnats, and six other plagues upon them all rounded up with the tenth and final plague. That plague killed the first born of every family and animal except for those who put lamb’s blood around their door. We could spend so much time talking about Passover and how beautiful it is, but that’s not the story right now. It was this final display of God’s power that Pharaoh finally let the Israelites go. Off they went. Freedom! But wait, Pharaoh changed his mind and pursued the Israelites. Well. Wouldn’t you know, the Israelites became trapped between the Red Sea and a bunch of people who wanted to kill and capture them. But, God.
Just a commercial break to say: if you ever thought the Bible was boring…give the Old Testament a try. Much like God’s love, the drama is never-ending.
Ok, so, God. He splits the Red Sea and not only do the Israelites have a way of passage but they walk through on *dry* ground. Wouldn’t you have hated to be the last Israelite to cross? I can just see myself running down the aisle. The Egyptian chariots behind me. Suddenly a sandal falls off, I’m putting it back on screaming, “Moses, wait, I’m coming! Don’t lower your arms yet!”.
The Israelites get through. God brings the sea down on the Egyptians – no one survives. Three days later, the people who just passed through an ocean…don’t have any water to drink. They cry out that they’ve been brought out of Egypt to die of thirst. They find water and it is bitter. They complain. Why has God brought them out of captivity to let them die? God leads them to twelve springs. PSA: there happen to be twelve tribes of Israel so no one had to share. He’s a God of abundance. They’ve got their springs, now they are hungry. They complain. Why did God take them out of Egypt to starve? You see a pattern, year? God sends manna and quail from Heaven on a daily basis. This went on for forty years. Forty years!!! God never missed a day.
Even though they saw God split the sea…they still thought God abandoned them to die of thirst. And then once He overwhelms them with springs of water, they think He will let them starve. We read the story shaking our heads thinking oh my gosh, He’s going to take care of you! Look at all He’s done for you!
Ohhh….wait, hashtag conviction. A little plank & speck of dust moment.
God parted the Red Sea (my abdomen), destroyed the enemy (cancer), and yet…I complain about not having water (see above for my list of grievances).
One of my failing characteristics is thinking I can do everything by myself. Which is a fancy way of saying I’m prideful. A certain pride that I can take care of myself and I don’t need anyone’s help or the way that I want to do something is the best way. But, God.
Oh, He knows how to individually break us. While I eat and drink fairly normal (most days), I’m conscious of what’s happening. I am so grateful every time a meal or a beverage goes down smoothly. Because there are a lot of times when it just doesn’t or I eat the wrong thing and start shaking like a chihuahua.
Saying grace went from semi-flippant “God is great, God is good…” to a very desperate “Lord, please open my esophagus and let this go down. Help my intestines to do their new job. Give me the patience to chew this slowly and the discernment to know when to stop eating”. This is not me being holy. God just knows my heart so well that He had to put a persistent reminder in my life that I am reliant on Him. I am continually eating or drinking and so I am steadily aware of my extreme need for God’s constant grace.
I get frustrated… a lot. Maybe it is the perpetual exhaustion or just really wanting to go through a drive-thru, order a burger and milkshake and gobble the whole thing (I still haven’t had red meat since Spring 2021) and not have to worry about how it will make me feel. Sometimes it is sourced in wondering what my future looks like with this new life. It can become a lot. And in my low moments when I’m asking God, what will I eat? what will I drink? how do I keep doing this by myself? He gently reminds me of one of His names: Jehovah Jireh, The Lord Who Provides.
He’s already parted the sea. He walked on the dry ground with me every day through recovery. And He’s not going to leave me on the other side without provision. Even if I have to remind myself every single day while I’m waiting on that daily manna…and quail (gotta have that protein). He is unchanging and He will always be The Lord Who Provides.
What’s your Red Sea moment? Maybe you aren’t a believer. Do you have a moment that you felt protected, provided for, or comforted? I’d love to hear about it.