Updates and more!

I realize an update is long overdue, so here we go!

 

Since my last update here are a few highlights:

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In early March, Philip and I started dating.
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Paul had his surgery on February 17 – his surgery could have gone better and he had a pretty rough recovery (whole other story) but he’s a lot better now! Also – John graduated college!
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Katie had her surgery to remove her stomach on April 12. The surgery took 8 hours but was successful!
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My best friend was such a beautiful bride in June and I was honored and thrilled to death to be her maid of honor. I also caught the bouquet!
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John and Kenzie got married a couple weeks later! It was a beautiful week. So much love for this couple and our families. Kenzie was absolutely stunning!
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Philip and I got engaged on July 3. I was so surprised!
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We took this after we got our wedding bands!

 

I guess you could say I have been incredibly blessed this year. In February, I was so beaten down. I couldn’t see any light and I asked God to show our family mercy and let us have a time of joy because we had had so many trials one right after the next.

Obviously, God answered that prayer. God also provided my dad with a new job. This new job is a complete God send and it perfect for him in every way.

So onto the “more” part…

Since my last update, I’ve lost right around 50 pounds, give or take a few. My weight has finally stabilized and I owe a huge thank you to my fiance for that. He’s been very proactive about reminding me to eat if I haven’t in awhile and makes me drink a lot of water. We were scared for a bit because the weight just kept coming off but it seems like I’m at a new normal now. Paul and Katie are both pretty much stable as well and healthy.

A lot of people have asked about some of the normals that TG people have to deal with. Being around 9 months out from my surgery, I can tell you that life is a lot more normal than I thought anyone in my family thought originally. We eat just about the same things except we have to pay very close attention to portion sizes, how fast we eat, suagr and fat content, and most importantly – our bodies. Sometimes our bodies are bi-polar and we have to just live with that. One day I’ll eat a burrito and am fine an the next day I’ll have the same thing but I will have a reaction.

Reactions are funny little things. The technical term is called “dumping” but it is a lot easier to say I’m having a reaction because everyone knows what that is. Reactions, or dumping, is when food enters into the small intestines too quickly. Some side effects include nausea, vomiting, diarrhea, rapid heart rate, fatigue, and dizziness. Sometimes we get all the symptoms at once, those reactions are the worst, and sometimes it can be one or two of them. Most days, I have around two smaller reactions. They last about 30-45 minutes. If I just ate too fast or too much they can be done in around 20 minutes.

Other “normals” include eating all the time and monitoring activities. TG people are huge snackers, and it is really not that bad. Turns out eating the way doctors tell us to eat is actually pretty great. I have more energy through the day and have learned that eating healthy really does change a person’s mood, sleep cycle, and health overall (who’dathunk it, right?). When it comes to monitoring activities, I mean that as a post-total gastrectomy patient, I have to be careful and mindful about how active I am during the day so that I don’t burn more calories than I consume or more energy than I can give. Otherwise, I’ll probably pay for it for a day or two. Here is a great explanation using “The Spoon Theory.”

I’ve been overwhelmed with the love and support our family has received throughout this past year. Thank you to everyone who has kept us in your thoughts and prayers, they have not gone unnoticed or unheard.

I guess this is it for now. I’ll try to keep updating more often! Hope everyone reading has a blessed day!

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.Through pain comes joy

I know it has been a long time since I posted last. A lot has happened in the past month! For starters:

  1. I am now able to eat 1,000+ calories a day orally (thats a huge deal)
  2. I think my weight has just about stabilized (I’m down about 30lbs)
  3. I have been living alone for about a month now and I’m doing GREAT
  4. I did go the hospital one more time, but it was for a dumb reason and long story short… I got a new feeding tube that is WAY more efficient and comfortable!
  5. I found out that I love duck. It is delicious.

My dad and I had a “come to Jesus” awhile back when I wasn’t doing that well… He basically told me that both he and my mother had done everything they could to help me… it was time though for me to start helping myself. We talked a long time and I got a lot off my chest. It was a good talk.

Now the hard part. You know how when you’re doing something that is really REALLY great for the kingdom, Satan really REALLY doesn’t like it? Obviously, I was on the right track with my new mindset because almost instantly the spiritual warfare began. I had a thought… a thought that I’ve only had one other time in my life but his time I had a panic attack.

“You could swallow all your pills…right now… and all of this pain would be over in an hour.”

I called my brother and I told him. We talked for a long time and you know what he told me? He told me that he would have been surprised if I hadn’t had a thought like that at some point through this process. What is scarier? I didn’t have a panic attack at the thought of taking my pills at once… No. I had a panic attack at the thought of someone finding me… How could I be so selfish after so many have given so selflessly?

That is the incredible thing about how great our God is… Satan put a thought in my head that I immediately regretted even thinking because I know how big God is and who is in control of my life. I am not the master of my own fate, as William Ernest Henley would say. If the devil is so anxious to end my life, I like to think that this is just the beginning for me and my family.

Also, here’s an updated picture of me since my surgery:

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Here is something I wrote a long time ago. I just found it on my computer and I thought it was fitting. You don’t have to read it… If you’re still reading I’m very grateful. This is a message we all need and we all need this little reminder that the Lord is Good…all the time.

 

 

There was once a man named Job. Job lived long ago in a city called Uz, which is in the modern-day Jordan area in southern Israel.

Job was a good man. He was described as blameless and wealthy with a family and lots of friends. One day, everything Job loved or held dear was gone; his livelihood, wealth, servants, his own health and even his family. His family wasn’t kidnapped and they did not run away with Job’s money. God allowed Satan to take away everything he held close to his heart. Satan was sure Job would turn against God, but he was wrong. Instead of forsaking God, he worshiped and said, “the Lord gives and the Lord takes away; BLESSED be the name of God.”

That does not mean Job was not mournful from all of his losses. Job cried out to the Lord. He shouted in anguish and admitted his desire for death and loss of hope. Job says in chapter 3 that he is not at peace. His integrity and relationship with the Lord were questioned by two of his friends and his third friend told him that he deserved worse.

In the end, Job remained faithful and held his hope in God. By doing so, he understood who the real enemy was. God blessed Job for his faithfulness by restoring to him what Satan had taken away.

Abraham Lincoln suffered through the untimely death of most of his family, including his own children, on top of the horrors of the civil war but still remained faithful. Martin Luther faced head on the worst of the Roman Catholic Church yet still choose to love it and fight for his beliefs. William Wilberforce saw the Christian culture openly doing the worst things to other humans and didn’t give up his faith but instead changed the culture. Mother Teresa spent time with the most neglected in the world. Despite publicly remaining faithful to the end, her diaries revealed battles for her faith.

All throughout history, we see men and women alike, who are genuinely good, go through trials and suffering.

John Calvin, theologian, once said, “You must submit to supreme suffering in order to discover the completion of joy.”

When hard times come, the first thing most people want to do is run for the hills, sit in the fetal position in a corner, or my favorite – bottle everything inside and hope it just goes away. God tells us that it is ok to hurt. Jesus, himself, even cried out to God asking him why he had been forsaken. Jesus wept and mourned but was the supreme example of calling to the Father for strength and faith through suffering.

St. Augustine nailed it when he said, “God had one son on earth without sin, but never one without suffering.”

Even Jesus, the perfecter of our faith, the Son of God, the savior of the world endured excruciating agony and suffering but remained faithful to the end.

Many of are hit hard with hard times. I know from personal experience that most of the time it seems impossible to see the good that can come from pain. James 1:2-4 says, “Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”

Joy comes to those who wait patiently. When hard times come, it isn’t because you deserve it, or because karma has been waiting to mess up your life because of something you did when you were five. Trials are a message from the Lord that should be taken with grace and faith that even in the hardest of times, He will remain faithful to you too.

The Lord’s will will never send you where his grace will not protect you.

 

Stumbling and Standing

 

This is Melana, updating for Chesney as she rests in yet another hospital bed.

The events of yesterday surprised us. Chesney had been increasingly tired for two days, and we’d even commented about the common TG trait of Vitamin B deficiencies, wondering if the fatigue was due to that. But about 10:00 a.m. I heard her moan from her bedroom, and walked in to find her almost comatose across her bed. She couldn’t focus, and couldn’t form words clearly.

On the first try I reached our surgeon’s nurse on her direct line, and we talked through several possibilities. We agreed to stay in communication and see what developed over an hour or so. D.L., wonderful brother-in-law that he is, came out immediately and helped with logistics, another set of eyes, and his trademark optimistic common sense. We Face Timed with Steve, to get his read on her condition. She was able to form some short words, and we could tell that she was indeed able to think and respond, though incredibly weak.

Our normally happy, perky Chesney was almost acting like someone approaching a diabetic coma (though her blood sugar was fine) – rouse-able, but her eyes struggled to focus, rolling back in her head, and her speech almost unintelligible. As noon drew near, with no significant change, our nurse told us to go ahead and call an ambulance and get to the hospital where blood work and diagnostic tests could give us a better understanding of the problem.

Now, 24 hours later, we know what it is NOT. She has not had a stroke, her blood chemistry is good, there is no internal bleeding. She has some fluid under her lungs, but that doesn’t account for these symptoms. After 24 hours on IV fluids, she is more alert, her eyes focus, and she can talk well, but the overwhelming fatigue/exhaustion continues.   We are beginning to think this may part of the “normal” adjustment to balancing nutrition and hydration with some oral food/water with tube feeding. Another factor is the emotional energy it takes to grapple with a cancer diagnosis, lose your stomach with the associated physical trauma, and grieve with siblings’ approaching surgeries all within a month’s span. Her body is also using a lot of available energy to heal, and only gives her a small allotment for everything else.

For today, there isn’t a bottom line yet. We are still dependent on grace for each baby step. God will heal and meet all her needs, whatever their source. He still causes our bad things to turn out for our good, assures me that our good things will never be taken from us, and that the best things are yet to be.

  • from the #cancerwarriorprincess’ mom, #choosingjoy, trusting #throughitall

Endurance and Pain as Worship

Yesterday I had had enough. I broke down over something I normally would just get a little miffed at. My mom and I talked a long time about how it wasn’t just that one thing. What it comes down to is this…

Yesterday I was defeated. I sat in a chair with my head hanging down in despondency after my mom gave me more medicine that she hoped would make me feel a little better. She slowly turned and noticed I still hadn’t looked up and tears had started running down my cheeks. She went to her knees and prayed over me that my pain would be taken and that the Lord would cover me in grace. After her prayer I looked up and told her what all was on my heart.

I’m tired of feeling thirsty… all the time.

I’m tired of chewing my food until it is basically paste so i can swallow it.

I’m tired of medicine.

I’m tired of being tired all the time.

I’m tired of being in some sort of pain somewhere 100% of the time…. Even if it is mild.

I’m tired of having to explain what happened to me when people see my feeding tube.

I’m tired of the dirty looks I get at the grocery store when I’m riding in a scooter because I physically cannot walk for more than ten minutes without my back hurting or without me getting winded and having to sit down.

I tired of my “new normal” and want to go back

I’m tired of being sick.

I had let the enemy win. My focus was not on the Lord and I was focused on how miserable I was – don’t get me wrong – I’m still pretty uncomfortable – but I feel a lot better than I did yesterday. I told my mom that I didn’t understand why I had to go through this… Why do so many sad things happen to our family? We are good people. We are faithful, minister, spread the wonderful news of our Jesus, we tithe, we help those who are less fortunate when we can… Yet there are thieves and scoundrels and other people in the world who don’t know the Lord who are living in complete sin with no remorse who are happy and healthy and have wonderful and amazing lives with no sadness… It wasn’t fair in my mind.

My mom read me a Psalm that she had read to her Bible study class. You wouldn’t normally think of this Psalm as a Psalm of worship but it is a beautiful example of the importance of worshiping through trial and enduring through hardships.

 

Psalm 13:

How long, O Lord? Will you forget me forever?
    How long will you hide your face from me?
How long must I take counsel in my soul
    and have sorrow in my heart all the day?
How long shall my enemy be exalted over me?

Consider and answer me, O Lord my God;
    light up my eyes, lest I sleep the sleep of death,
lest my enemy say, “I have prevailed over him,”
    lest my foes rejoice because I am shaken.

But I have trusted in your steadfast love;
    my heart shall rejoice in your salvation.
I will sing to the Lord,
    because he has dealt bountifully with me.

My mom gave me permission to publish out her notes on this Psalm. She wrote it the day before my surgery.

“How long, Oh Lord, how long? You are my God, my covenant Savior, my kinsman, redeemer, my Father and my friend.

You sent the Holy Spirit to fill me with your presence and comfort

And I am so grateful.

I am also so weary.

You’ve told me to stand. I am, but the exhaustion is excruciating. I am weak beyond words. The energy to breathe fails me, much less to keep my knees from buckling. I long to dissolve, to collapse, to be carried away. I am not a victorious stander. I don’t feel like an overcomer.

Am I?

Having done all, stand.

Is there anything more in the ‘having done all’ to do?

When does the 5 o’clock whistle blow? Endurance in a pain-seeped word. Obviously ‘endurance’ implies going beyond what I perceive I am capable of. Pushing past my perceived limit means entering a lap I can’t see

Seeing the unseen is going forward in faith, how does that happen without energy?

You will give strength. How? By waiting on my part. Those that wait on the Lord renew their strength.

So, I stand, waiting on you to renew my strength to stand longer.”

My mother is a wise woman… but she is also a woman of the Lord. The Lord gives her words that she doesn’t even know how much will help those around her until the time comes.

So, my dear friends. We prayed our psalm of pain and endurance yesterday and ended with my favorite verse. This verse that has carried me through more trials than I care to remember but has never let me down or left me discouraged. I’ll leave you with this and I pray you find comfort and worship through endurance and pain.

Hebrews 12:1-2

“Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.” 

Difficult storms, deeper roots.

If you don’t know who I am, my name is Erika Tanaka and I’ve known Chesney Anne Monroe only a few short months less than I’ve known my own sister, and even in those few months, my sister was too young to play with or keep secrets. Chesney and I came into each others’ lives at a time of boundless imagination, infinite dreams and limitless energy. We did everything together. We are each others’ person.

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Two aspiring ice skaters and a dazed little sister.

So when Chesney FaceTimed me and told her about her diagnosis, I was frozen. I didn’t know what to do or how to respond. I just sat there, in my work office, unable what to say back. All I knew was if Chesney was going to go through something big, I was going to be there by her side through it all.

So after her surgery, I spoke with her mom and we decided the last weekend of January would be the best time for a visit.

On our first night, I’m in Chesney’s bedroom with her parents, and they are taking her through what has become her nighttime regimen- hooking her up to strange machines, counting out pills and measuring milliliters. And through all of these motions, I am watching the faces of the people I love surrounding me. I see an assortment of emotions in their eyes as their muscle memory carries them from one step to the next: pain, hurt, fear, exhaustion, prostration, strength. But it’s when I take my eyes off Chesney and look into the eyes of her tired and worn mom and dad that I am able to see the immeasurable love of a parent.

At that moment, I had to take a step back and watch God’s mercy and love in front of me. In her parents’ eyes, I can see the fear and exhaustion that has clouded them for so long and how they are just longing for their daughter’s relief. Their eyes tell a tale of so much pain and suffering, but also sing of the strength and hope they have knowing that Chesney’s body is healing. Steve and Melana Monroe are a true testament to an ineffable strength that does not come from them.

The second night was the night it really hit me.

If you’ve ever watched a car accident happen on the opposite side of the highway, you might have a semblance at how I felt this weekend. Watching a terrible thing happen that leaves behind so much wreckage and pain, knowing that something has to be done, but also being powerless to help. But what if the person in the car accident was somebody you loved, and you were unable to help? For as long as I can remember, I have been the one to fix Chesney. When she fell down, I picked her back up and brushed off the dirt; when a boy broke her heart, I came over at midnight to put back the pieces; even when we were hundreds of miles apart, I picked her up, piece by piece over the phone. Now, there I was, sitting right next to her, and there was nothing I could do to take away the pain and hurt.

There was a point in our visit that Chesney went through excruciating pain, and I just stood there, powerless. It was an experience that I had never encountered. Here I am, watching the person I love as much as family in an incomprehensible pain, tears rolling down her face, and all I can do is watch and hold her hand.

But that’s what friendship is. It’s taking care of each other, crying together, laughing together, it’s holding her hand and wiping the tears away. I’ve come to learn that friendship isn’t just about the inside jokes and secret handshakes- it’s about carrying the other when they don’t have the strength to pick up their feet. So she and I laid there, crying in silence, waiting for the storm to pass. I held her hand until she fell asleep, and I thanked God for an amazing, beautiful friendship that, due to years of scraped knees, heartache, teary-eyed goodbyes and storms, has taken deep roots and will not be shaken.

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Seriously, Chesney just had major surgery and is still radiant.

 

 

 

Sorry for being MIA

In my last post, I wrote about my rough day. I thought that would be it but I realize that was wishful thinking. On Tuesday, my nerve blockers wore off completely and I didn’t have a whole lot of pain medicine readily available since they took my morphine pump. All in all – Tuesday was just a big painful day.

Wednesday I woke up and I thought it was going to be a great day. I woke up early, watched some Netflix, walked around a little bit, was about to take a shower but then all the sudden… BOOM. I became very weak, light headed, dizzy, went from cold to hot and cold to hot back to cold. Turned out I had a fever that was 101.6.

When my parents got there they took amazing care of me. I don’t know where I’d be without them. As the day progressed, my fever got higher. My doctors we worried and so the ordered a ton of tests like blood, urine, x-ray, and a CT scan. Everything came back normal except the did find a little bit of fluid on my lungs (which explains why I’m having shortness of breath).

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This morning (around 3AM), they made me start on some breathing treatments. I don’t like those. Today has been a great day though. I woke up pretty early and felt awesome. No fever, no nothing. I got up and my mom and I cleaned my room, ordered room service, and took a nice walk. When we got back, I had a few bites of my grits and then felt full so I put it away. About 15 minutes later, I had my first episode of dumping.

For those who don’t know what dumping is, it is something that happens when food or fluids move too quickly through your digestive track. Dumping is most often caused my foods that really don’t agree with you (i.e. sugar or high fiber foods). Symptoms include nausea, dizziness, weakness, rapid heart rate, abdominal craping, or even diarrhea.

The cramping is intense. But  I got some medicine and even though you basically just have to wait it out – it was survivable. Now I’m back to my old self! The rest of today should be a great day. I’ll be here a few more days so if you want to come by, just let me know!

Thanks for your prayers!!!

Chesney

Jan 18, 2016

Today has been rough.

 

Everytime I think I’m doing well, I end up taking a step back. Please don’t think I’m throwing a pity party, asking for attention, or asking for encouragement to be thrown at me every which way. I will gladly accept all prayers, encouragement and love that you all send my way.

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Last night I slept really well. So well, in fact, that I did not wake up once to restart my pain medicine. When I woke up around 4AM, I all the sudden couldn’t breath and was begging my nurse to get me something (I’m in tears at this point). He gave me a medicine called toradol…it helped for the time being.

All day i had pretty consistent pain. They took my morphine away and make me walk a lot and work on something recovery related that i probably should have been able to do yesterday.My nurses got on to me quite a bit.

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Oh! I ate a solid today… mashed potatoes… normally I’d go crazy for mashed potatoes but they really didn’t sit well or taste good. Back to chicken broth! Yay!  It is actually very tasty so don’t feel too bad for me. Anyways, thats about it for today!

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Love to all!

 

The itch is real

Today started out pretty rough. my stomach hurt, I was nauseous, my head hurt, and I was getting hangry. My night nurse, Susan (bless her soul), is awesome though and has done everything in her power to make me comfortable. I went to sleep for a couple of hours and woke up again at 6, decided that was still too early and slept in until around 8.

Last night and today I have been incredibly itchy. My best guess is that the morphine is causing me to itch. I told my nurse and she helped give me a sponge bath and that helped a lot. After my bath, I took a long walk. They say the faster you can move around, the faster your recovery will be so last night and this morning I walked for about 20 minutes and then this afternoon my dad and I walked about a half-mile.

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This chicken broth was AMAZING

From what I can tell – it really is true. The more you help yourself, the faster you’ll heal. So – for those of you who have to have a total gastrectomy in the future, start running, walking, jogging, get on the elliptical because I have no doubt that since I have a pretty strong heart, it’s helping me feel better and want to be better. Some more advice: take advantage of the fact that you can drink water. That goes for everyone. I had about 3oz of apple juice and I was filled up. Water is gross now, which is sad.

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Right after my late walk! Resting for a minute

Love to all! Thanks for reading and keeping up!

 

Day 3: Blanket!

Brooke finished my blanket. It turned out better than I could have ever asked. Last night, Jim brought it up to the hospital and we face-timed Brooke. 12443792_10153864882188522_1483518093_oThat surprise was really great and I was so excited. It’s funny how the little things in life make such a big difference.

So far – day three hasn’t been all that bad, believe it or not. I woke up pretty much on the hour every hour to give myself a pump of morphine. Then this morning we had a little bit of a scare. My blood pressure was 80/40 and I had a temp of 101.3. I’m feeling much better though because I did some breathing exercises that my nurse told me to do.

Hopefully I’ll be able to walk around today! My doctor said that today is going to be a big day. I’m ready to walk… I’ve hated laying in bed all day but I know it was necessary up until this point. I’ll keep you all posted!

Day Two – Post Op

This is Chesney’s mom, sitting bedside in the recovery room. The first night was rough, pain wise, but all her physical vital signs are good. Her spiritual signs are good, too. When you are in great pain and drugged, there is no filter; what you are inside wells out. What I hear coming out, over and over, is compassion and kindness – for the man in the next bed, the nurses on their feet all night, the emergency ha
ppening across the room, her tired dad driving back and forth.
It just struck me how Christlike this is. When he was in great pain on the cross, his words were of comfort and compassion for those around him. I know what I’m seeing here is a result of the Holy Spirit in her, which is tangible evidence that he is working healing in her physical body, too. Day Two is beginning well.