When disappointment strikes keep marching on

My story is riddled with disappointment, changed plans, complicated/mysterious disease, one step forward & 2 steps back, fixing one problem only to reveal another. Perhaps the theme of God’s plan for my life is “Peace in the unknown” and “Piecing together a broken heart by the Healer’s hand.” And this latest disappointment, well, it will just be another part of my story through which God can shine His glory to all who see or hear it. God will make a way out of this brokenness.

 

He always does.

 

His hands that formed my heart are the only hands that can piece it back together. These changed plans that will rock my world for a brief period of time have the potential to make an impact for the kingdom that exceeds my lifetime. This change is allowing me time to relearn and recommit to my Father’s plans, above my own.

 

He KNOWS my future… so who cares if I don’t?

 

I’ve written time and time again about trusting all my plans, all my days to the Lord almighty, longing for His almighty Will. But this trust is an attitude that we must consciously choose everyday. Sometimes we need reminders that force us to take a step back and reevaluate before marching forward with new confidence.

 

For the last week my head has been pounding with relentless force. My dark circles hidden beneath swollen, puffy eyes from constant tears. I feel like I’ve been hit by a train physically and even more so emotionally.

 

In some ways, I have been.

 

Last week held a long anticipated, patiently awaited, devoutly prayed for doctor appointment which turned out to reveal everything I fear and prayed not to happen. You see, since my hospitalization in April (a few weeks before the wedding)we had been discussing a possible new medical plan involving surgery that was presented as potentially “life-changing.” My doctor continued talking about this plan through the summer and in July spoke of it with new confidence. He acted confident in not only identifying a specific issue that he could repair/improve, he also pitched the idea of better things to come in the foreseeable future. Tyler and I both had the impression he was pretty set on this plan when he said that the results of my next round of testing “would likely NOT change his mind.”

 

Historically I have a failing record with medical tests. Even when I’m tested for a problem which is very real, that we know is present, it does not show up in a measurable way. I can get results that show up close to normal, or normal when we know I’m anything but… Thus my body remains mysterious or I’m told I’m a complicated body in a difficult situation.

 

So when my doc said that the results of further testing would not change his mind, I felt peace. I felt relief. I felt confidence. I felt like this plan of action was going to happen, it was just a matter of when. I believed this was an amazing answered prayer. I allowed myself to become even more hopeful. And I placed trust in this new plan.

 

I cried with relief. I cried in praise of answered prayers. Tyler and I celebrated with laughter and talk of all the things we would be doing/eating together. BETTER was just within reach. All my patience in waiting time and time again, all my diligence in staying hopeful through terrible days, all the pain that I endured just to give myself small amounts of nutrition, all the vomit I choked back down, all the things that I should have been able to do/experience by now…well, none of it was in vain.

 

Because something was going to happen.

 

{I must preface this by saying I do not want any negative comments or feedback regarding my doctors and their decisions. I have the utmost respect and love for every person in the medical field who has helped save my life. But just like family members… you can love someone and not always like them, not always agree with their decisions}

 

We  arrived at the doctor office last week with high hopes for scheduling this next operation and making the appropriate plans for after. But honestly, the second we got there I felt uneasy in the pit of my stomach and the parts of my heart that just know. Maybe it was when I realized I was wearing the exact same shirt I had on almost exactly 2 years before (Sept 2014) in this exact same place where our plans for an impending surgery were dramatically pulled out from under our feet.

 

Or maybe it was the fact that I got stuck telling my entire medical story to yet another new surgical resident who knew nothing about our latest plans.

 

Long story short, my instincts were correct. My doctor did in fact change his mind.  My latest tests were practically worthless as they did not reveal anything new or helpful. They actually showed “normal” data. And without enough significant evidence of the problem he suspected, surgery is now off the table. And I’m back to where I was… doing the same things I have been. Figuring out how to heal myself…placing all my energy on trying anything and everything. Here I am, still waiting for this awful, debilitating GI stuff to get better on it’s own, though we’ve already determined we are past the point of it fixing itself.

 

And my doctor is fixated on, “You look better than I’ve ever seen!”

 

That’s when I just tearfully nod though I want to shout, “That’s because you’ve only seen me in critical condition!! Fresh off a Whipple that removed a large mass of cancer from my pancreas and reworked my entire insides. You treated me through complicated, extreme pancreatitis that would not subside yet worsened as I stayed NPO on a 24/7 feeding tube for close to an entire year. I used to come into this office in a wheelchair without the strength the put on any makeup or wash my own hair. I used to be 85 pounds and now I am just over 100.… But that doesn’t make all of this okay! I should not have to accept this as the best it’s gonna get!!”

 

 

So yes, I am world’s better than I was. Comparatively it is amazing and miraculous to see where I am from where I was. I am exponentially grateful to be where I am. I did not deserve to be rescued by our Lord, yet His goodness saved me! That is beyond amazing!!

 

But as I continue to fight I have to keep reminding myself, it’s okay to want more. It’s not bad to long for and fight for a better state of life. I refuse to stay where I am. I want to move forward. And I will. I will not force my body to continue surviving on merely 800-900 pureed calories a day. I won’t continue this cycle of only being able to do the bare minimum most days, with the need to lay down for hours in between every task and still being miserably fatigued halfway through the day.

 

If I cannot nourish my body more and properly, I cannot get stronger. I’ve hit a plateau but I won’t stay there.

 

Honestly, I feel given up on. Confused. Lost. Doubting myself, questioning my pain, and my own sanity. Am I crazy? Do doctors know my own body better than I do? Do I just need to be tougher? Suck it up even more? Is my intuition misguided? I’ve asked these questions over and over through the last 3 years.

 

 

No, No, NO!!

 

I TRUST what God says to my heart. I have total confidence in what the Holy Spirit speaks to me through my intuition. I trust my ability to determine what is best for my own body based on how it communicates to me. I cannot lose sight of these things which I know to be true.

 

Next month I’ll begin a new workup with a motility specialist whom it has taken months and months to be seen by. Perhaps this will be the next doctor to figure out my body, take action, provide answers.

 

The last time this near-exact situation occured (Sept. 14) I was sent to the University of Cincinnati to see Dr. Ahmad who ended up performing my pancreatectomy/splenectomy/iselt cell transplant. And though I was devastated at that time by the failed plans which I had set my sights on…this was the right move, the best move.

 

My latest failed plan will be, too.

 

Still, I’m incredibly disappointed. I was devastated. My soul feels heavy, downcast. I’ve run out of tears to cry. Yet I need time to process and space to heal, mend, reevaluate, pick myself up, and continue marching bravely forward.

 

None of this heartache changes my faith or my belief in my ultimate Redeemer.

 

I am shaken yet my trust in the Lord is not.

I am weak but I know He is still strong.

I feel lost but in Him I am found.

 

In this time of heart healing I cling tightly to these forever truths:

  1. Every tear I cry He holds in His hands.
  2. Through the valley He is with me.
  3. My cup overflows.
  4. There is a greater plan than I can ever fathom.
  5. He brings beauty from ashes.
  6. Better things have yet to come.
  7. Our Father gives only what is good.
  8. Those who seek Him lack no good thing.
  9. The Lord withholds no good thing from me, His beloved.
  10. I am forgiven and free from the chains of sin and shame by the blood of cross.

 

Thank you, Father! I’m trusting You to take this brokenness and create it into beauty from the glory of your name.

 

 

14 thoughts on “When disappointment strikes keep marching on

  1. Never give up hope and keep researching. There are tons of doctors and specialists out there. Plenty of patients like you that may be going through similar health problems.
    After some bad experiences I have realized that I must control my health and find other resources when things seem hopeless.
    When they removed your pancreas .. did they get rid of all the cancer?
    Oh God… please give this poor girl a break. It’s so unfair. ((((( hugs ))))) Mallory. Let me know if I can help.
    I know a lot of doctors here in Louisville. One of our customers is a world famous cardiac surgeon who is regenerating damaged muscle tissue in the heart using the patients own stem cells.
    They’re doing so many amazing things with different body parts..I just know something is being overlooked.
    Keep me updated. Message me and tell me what it will take for you to live a normal life again. I’ll ask around.
    I’m so sorry you’re dealing with this 😐

    Liked by 1 person

  2. I am new to reading your blog although I have followed your story through these three years. I wanted to share a song with you that has helped me in my trust in God through facing the unknown….Glorious Unfolding by Steven Curtis Chapman. I am praying for you and asking for wisdom for doctors, strength for your days and peace for your heart. Bless you in the name of Jesus

    Liked by 1 person

  3. Mallory, I want to cry evey time I read your blog! You are so resolute, so full of hope in the Lord, it makes me feel like a worthless bum. Your strength is amazing. Your faith is beyond belief. Please keep on striving to get better, but rest all you want. Nobody wants you to be in despair and worn out. We all love you so much!

    Liked by 1 person

  4. I needed to read this. Although my heart aches for both of you, because I SO understand the excited anticipation of a new treatment or test to help my weak, hurting body. My husband and I too have arrived only to once again tell my story, explain I’m not the typical blood work or scan results pancreas sufferer, my case is different and difficult. Only to learn that, labs are great! You’ve gained 2 lbs.! Let’s not do said procedure. Yes but I may not be 88 lbs. and I may be dressed nice today, not doubled over, not in the hospital, asking God for strength to fight, I still am only 91 lbs. and I am not well. Please help me.

    We’ve driven home, silent, in shock that a jovial new doctor didn’t understand my last frightening year. That we are both scared. That my husband takes what few days off from his job to quiet my fear, feed me, advocate for me on the phone, and get me through symptoms the doctors are concerned about but have no answers.

    So he and I keep our eyes and hearts firmly on God. We know His plan for us is perfect although we don’t understand, we have the Faith to lean on Him and He does calm our fears.

    My little body is tired. Each new attack weakens another organ, each new tube reveals another “complication” where the tube to nourish me can’t be used because there’s a problem with the esophagus and the tube won’t go down. We’ll have to use a different feeding tube procedure. No we can’t, your Lupus put you at too high a risk of infection, “let us discuss this and we will figure something out” but it never happens. It’s so easy to be discouraged by the enemy when instead, stand hopeful in God’s plan.

    I see I’m not alone, and though I wouldn’t wish this on anyone else EVER. I see that there are those who struggle but their Faith I can learn from and lean on.

    I pray constantly for you two and for all who suffer, I give thanks for the daily blessings that appear in the midst of the turmoil, fear and pain. Thank you for your wisdom and for sharing your incredible story. I’m with you when you are quietly weeping, and when you are joyously celebrating a “good” day.

    God Bless, Susie

    Liked by 1 person

    1. Oh Susie, my heart hurts for you and your suffering. I hate that we can relate to each other, but you are right…we can learn and lean on others who suffer in similar ways. Prayers for you and your husband as you continue to fight. Thank YOU for sharing your heart with me!

      Like

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