Undone. Treatment Again. And a giveaway

by

Trauma

I began reading Michele Cushatt’s Undone: A Story of Making Peace With an Unexpected Life at the beginning of a challenging week. You may have noticed quotes from her book on the graphics for recent posts about our new Thursday community called Gauntlet Story Feast. I finished reading it yesterday while waiting at the hospital. Michele’s narrative is full of truth spoken into my mind and heart at a time when the lies seem much louder and more believable.

Her story is completely different from my own. It involves ministry, divorce, remarriage with a blended family, foster children and recurring mouth cancer. Still, there are quotes at the beginning of each chapter that I have woven into my own tapestry of faith over the years. Most of the Scripture she shares are verses and passages I have scribbled on index cards, in journals and highlighted and bookmarked in my tattered Bible. There are moments she bares her soul in such a way I can literally see my own reflecting back at me.

I’m heading back into the trenches of treatment. There are always weeks I dance around what I know is happening in my body, and there is always a moment when it becomes clear intervention is needed again. I get that heart pounding, mind racing, nausea inducing panic. Every time, I begin with a wail similar to Michele’s when the fears of her cancer returning, prompted by some kind of physical manifestation, would cause her to cry she just couldn’t do it again. Another surgery. Another treatment. Not again.

She candidly writes about trying to do all the healthy things she knew may bring some measure healing. I certainly have been dedicating myself to these things as well. Eating well, exercise, mental health counseling, consistent time in the Word and prayer and meaningful relationships with positive people have been my primary focus since my last round of plasmapheresis over Christmas and New Years. All of this is good. But when your DNA is glitched. When your cells have morphed into invaders. When God answers a resounding “No” to the pleading for Him to remove your thorn in the flesh you start to know

. . . the hard way, that sometimes trauma grows beyond a long walk’s ability to cure. The losses, crises, transitions, and upheavals extend beyond the arm’s capacity to hold. At times, even when your belief in and love of God run strong and true, your body just can’t take any more of the trauma.

The first time I had apheresis I was in-patient in Maryland. It was a year ago. Dan and I left our girls on Easter weekend to begin this new chapter in my quest for healing. I had a three pronged nearly foot long “Quinton” catheter placed. It hung from the side of neck and made every movement uncomfortable. I had eighteen surgeries under my belt by then, five in that hospital. Because my venous system is also affected by my EDS I require a PICC line for most things. I knew the interventional radiologist and trusted him and the team implicitly. Still, I had nothing to compare this placement to. Lidocaine doesn’t really numb me. I tell this to everyone who tries to use it. They never quite believe me. I’ve learned to bite my lower lip, hold back curse words and let people take the cut. I think everyone on the outside looking in at my life must somehow think it gets easier or less frightening or even less painful to go through these traumas over and over again. I’m telling you it does not.

When I repeated my treatment locally and out-patient in early September, 2014, we decided to have the line placed at my insurance preferred hospital for financial reasons even though the actual apheresis be at a local out of network hospital. My dad took me for a scheduled 7 am surgical appointment. There was an emergency that required the room, equipment and doctor and nurses I was supposed to have. The hours dragged on while I laid in my cap and gown in holding. Every once in awhile a nurse would poke her head in and tell me it wasn’t going well in there, and it would be a little longer. I had treatment scheduled at the other hospital at 2 pm. Finally they were able to take me back, but the entire room seemed disheveled. The nurses were exhausted from whatever they had just gone through. The doctor came in and said he knew I had to rush over to make my treatment time so he wasn’t going to use any sedation drugs at all, just a shot of lidocaine. I made my “it doesn’t work for me” plea. He brushed it off, and he took the knife to me. It was horrific. The entry for this tunneled cath was different. He kept getting the needle in but couldn’t get the angle right to jam the tube in. He was frustrated and I could literally feel the frustration in his frenetic efforts. I was bleeding. I could see it and feel it. I was freaking out and hot tears were running down both sides of my face into my ears. It was sewn lopsided and pulled and chaffed the entire time I had that particular cath. I developed a huge bruise around the area from the jamming and pushing of the tube. I swore I would never let that doctor work on me again.

My last round of treatment was late December, 2014. I didn’t care what the extra cost I knew I wanted the cath placed at the same hospital I would have treatment. They were so much kinder. They tried to give me some anxiety and sedation type drugs. I think they calmed me a little. I was still fully awake and very aware. The lidocaine was once again like a placebo. The doctor was much gentler with insertion. I still remember crying the entire time. Once of the nurses stood next to me and wiped my face with tissues.

Monday at noon I will have a catheter for a central line tunneled from a cut in my jugular all the way into my vena cava. This allows for multiple lumens so blood full of bad antibodies can leave my body and theoretically clean plasma in the form of albumin can enter my body all at the same time. Tuesday I will begin the first treatment.

The plan is to have five spread out over ten days. This has typically removed about 98% of my bad antibodies. What we know now through more cases and research is my body is slowly recreating these suckers and around 60-75 days after treatment I am back where I started in terms of the science and symptoms. The new recommendation agreed upon by three of my specialists, including my cardiologist in Toledo who I saw Tuesday, is we clean me out and follow immediately with an old chemotherapy drug. It is well understood. It is easy to administer weekly. It is easy to monitor for side effects and toxicity and would hopefully suppress the bad antibodies from returning. There are three other drugs we can try if this one is not tolerated. The time frame for this treatment would be six months or longer.

My parents are in Spain. My girls are on spring break. The logistics of this treatment are so hard because each day I have to go very early in the morning to get labs drawn and either sit at the hospital for hours waiting for a call from the unit for a time or drive home and wait and then go all the way back. We have Monday worked out with Dan taking off and my sister helping with the girls. Tuesday Dan will leave work and take me whenever they set a time for treatment. Even if the girls have to ride along and they drop me and then pick me up it will work. We had a little family meeting last night. Dan said, “We are just going to do our best. That’s all we can do.” There is no molly coddling our girls anymore about how this sucks. This is another break from school where all the focus is on their mom, and they have to stay still, be quiet, watch movies and wonder how the rest of their friends are having fun.

Thank you for the offers to help with meals. My friend created a Take Them a Meal schedule. The sign in is “Snyder” with the password “Help”. All our other needs are repetitive, and I weary of making them known. More than anything we need prayer. Please pray.

Michele writes at the end of her story,

Making peace with the unexpected life isn’t some trite, Christian cliche. It isn’t a beautiful string of words that look nice and shiny hanging around my neck. The kind of peace that weathers a furious squall by sleeping in the boat is both hard earned and God delivered. One story–and serving of manna–at a time. And by the mercy and grace of the one who walked me through all the storms leading up to this one, I can finally say, even as the rain soaks my face, “I am convinced.” He will not let me go.

Today I feel like I just can’t take any more trauma.
What I believe about God says I can.
I am convinced.

Our Hope remains.

When you are faced with a daunting trial what Scripture do you cling to the most? Will you comment here with a verse so I can feed on truth in the coming weeks? And will you use the share buttons below or quietly ask a friend to pray for my family and I? We are grateful. I am giving away a copy of Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life. Each comment of Scripture will be an entry into a random drawing Friday morning, April 3rd.

Photography by Cindee Snider Re. Used with permission.
Quote taken from Michele Cushatt’s new book Undone: A Story of Making Peace With an Unexpected Life.

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21 Comments on Undone. Treatment Again. And a giveaway

  1. Emily
    March 28, 2015 at 5:18 pm (2 years ago)

    Dear Monica… They’re are once again no words to say. I am so sorry for it all. It’s always hard for me to pick just one verse that speaks to me, but lately I’ve been turning to all of Psalm 103. I find that it reminds me of the greatness of our God, and how small me and my problems are compared to the greatness of all that HE is. I hope this verse might bring you some peace in the coming weeks too.

    Reply
  2. Violet
    March 28, 2015 at 5:38 pm (2 years ago)

    “Though the fig tree should not blossom, nor fruit be on the vines, the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls, yet I will rejoice in the Lord, I will take joy in the God of my salvation.” Hab. 3:17, 18

    “My soul is bereft of peace; I have forgotten what happiness is; so I say, ‘My endurance has perished;…But this I call to mind, and therefore I have hope. The steadfast love of the LORD never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness. ‘The LORD is my portion,’ says my soul, ‘therefore I will hope in him.'” Lam. 3:17, 18, 21-24

    “Why are you cast down, O my soul, and why are you in turmoil within me? Hope in God; for I shall again praise him, my salvation and my God.” Psalm 42:11

    Reply
    • Monica
      April 1, 2015 at 8:55 pm (2 years ago)

      Oh Violet, These are exactly what I need to read tonight. My endurance has perished, but yes, I call to mind His faithfulness, and I have hope! He is my portion. Leaning in to count even this joy. I’m ever grateful for your light on this journey. I love you dearly.

      Reply
  3. Tania Manner
    March 28, 2015 at 9:11 pm (2 years ago)

    Your story is scary and makes me sad. I live in Toledo!! Do you see Dr. Grubb? He is my daughters cardio doc. If you are in this area and need some company please let me know. I would have no problem taking a day away from work to sit with you.

    Reply
    • Monica
      April 1, 2015 at 8:51 pm (2 years ago)

      Tania, YES! Dr. Grubb is my cardiologist. I would love to meet you sometime when I am there. Do you or your daughter have EDS? I’m glad you joined on this journey. Together we are braver. Much love.

      Reply
  4. Jennifer S.
    March 28, 2015 at 11:09 pm (2 years ago)

    I’m praying now for your picc placement, husband, daughters, and medical team. I’m new to your story. Stay strong in your faith there is still hope.
    As a small alternate to lidocaine try frigid cold. (If you have already I’m sorry it’s not new) A flexible cold pack for 20 minutes just before the procedure might take the edge off.

    Reply
    • Monica
      April 1, 2015 at 8:53 pm (2 years ago)

      Jennifer, Thank you for your prayers. The placement was rough. We couldn’t even get an IV! God helped me through. I will have my second round of plasmapheresis tomorrow. I’m glad to have you join here. Ever hoping and believing in Him. LOVE.

      Reply
  5. Julie
    March 29, 2015 at 9:04 am (2 years ago)

    Thinking of you and praying for you. I hope you gain strength from the knowledge that you are not alone. I just wish we could all absorb a bit of your pain and fear to lessen your trials.

    Reply
  6. Caryn Christensen
    March 29, 2015 at 5:10 pm (2 years ago)

    I am undone by your words, your suffering and your strength. I haven’t walked this road of ill health, but you know, more than many, my story enough to know that I can relate to your fears and concerns…and that you are tired. Thankfully, God’s word applies to every situation and every heart. When I have been at my end, these truths have been a comfort to me;
    “Surely God is my salvation; I will trust and not be afraid. The LORD, the LORD himself, is my strength and my defense; he has become my salvation.” Is.12:2

    “LORD, you alone are my inheritance, my cup of blessing. You guard all that is mine.” Ps. 16:5

    Reply
    • Monica
      April 1, 2015 at 8:47 pm (2 years ago)

      Caryn, I am having a hard night heading into round two tomorrow. What a blessing to come find this truth here tonight. He is my strength. He is my defense. He is my salvation. Thank you for your love and prayers. I miss you.

      Reply
  7. Pam
    March 30, 2015 at 8:47 am (2 years ago)

    “I have made you and I will carry you; I will sustain you and I will rescue you.” ~ Isaiah 46:4

    Reply
    • Monica
      April 1, 2015 at 8:46 pm (2 years ago)

      Yes. Carry. Sustain. Rescue.

      Reply
  8. Lisa
    March 30, 2015 at 11:13 pm (2 years ago)

    Praying for you now that God would grant you comfort and peace on this difficult journey. Thanks for sharing your heart with us along the way. You are pointing others to God as you trust in HIM. #FindStability with Stacy Thureen

    Be blessed! Psalm 34:18 “God is near to the brokenhearted and saves those who are crushed in spirit.”

    Reply
    • Monica
      April 1, 2015 at 8:45 pm (2 years ago)

      Lisa, Thank you for this encouragement. Our Hope will not disappoint!

      Reply
  9. Gina W.
    March 31, 2015 at 1:22 pm (2 years ago)

    I pray for you, daily. You minister from your heart and I’m touched so deeply. May God carry you and meet every need, in His Name.

    “Blessed is she who believed,
    for there will be a fulfillment
    of those things which were
    told her of the LORD! ” – Luke 1:45

    Love, Gina

    Reply
    • Monica
      April 1, 2015 at 8:43 pm (2 years ago)

      Oh Gina, I love this verse. I’m truly grateful we are hand in hand in all this. Our Hope remains! LOVE.

      Reply
      • Gina W.
        April 2, 2015 at 1:22 pm (2 years ago)

        AMEN! Praying for you daily.

        Gina >

        Reply
  10. Jen Linville
    April 1, 2015 at 9:57 pm (2 years ago)

    “I shot an arrow into the air,
    It fell to earth, I knew not where;
    For, so swiftly it flew, the sight
    Could not follow it in its flight.

    I breathed a song into the air,
    It fell to earth, I knew not where;
    For who has sight so keen and strong,
    That it can follow the flight of song?

    Long, long afterward, in an oak
    I found the arrow, still unbroke;
    And the song, from beginning to end,
    I found again in the heart of a friend.”
    -Henry Wadsworth Longfellow

    Reply
  11. Jen Linville
    April 1, 2015 at 10:08 pm (2 years ago)

    “Ah, how wonderful is the advent of spring!Ah, how wonderful is the advent of spring! — the great annual miracle of the blossoming of Aaron’s rod, repeated on myriads and myriads of branches! — the gentle progression and growth of herbs, flowers, trees, — gentle and yet irrepressible, — which no force can stay, no violence restrain, like love, that wins its way and cannot be withstood by any human power, because itself is divine power.”
    -Henry Wadsworth Longfellow

    Reply
    • Monica
      April 2, 2015 at 8:57 am (2 years ago)

      Ohhhh Jen, This is lovely. Thank you.

      Reply
  12. Sheila Kimball
    April 2, 2015 at 10:35 am (2 years ago)

    May God continue to hold you ever so close to His heart, dear Monica. Praying for your healing. #FindStability

    Reply

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