Then The Unexpected Happened

I didn’t see this coming

So let’s recap. I left you guys hinged on my “more painful than expected” recovery, post Cryoablation, that last week of September or so.

Though the pain never really ever dialed down, I still made the decision to proceed with work Tuesday, October the 1st. I had two appointments that day, that were thankfully slower paced, and had a little downtime in between the two as well. Thankfully, I only had two, because half way through the second, I was fighting to not convulse, due to the wasp stings and lightning. I fought the tears that masqued the level ten pain I had to hide the last 45 minutes of my work day. By the time I wearily walked to my car, completely zombie-fied, and now at 1,800 mg of Gabapentin at 2:00 p.m… I drove home on auto-pilot, walked in the door, purely mentally spaced, and physically utterly shutting down. My husband unloads my car, and carries my bags in for me. I walk to my closet, begin to change from work clothes into my lounge wear, and I pause, somewhere in between changing shirts.

that emotional bomb that was inevitably bound to implode

Dell comes into the office lounge, where I am, sits down in his office chair, and begins to recap a little of his day. My back is to him, as I’m scanning my closet for a comfortable shirt to wear. I hear him talking, but I’m so mentally drained and emotionally overwhelmed with the fight that my body is fighting right now, I become numb. I hear him talking, but no concise words – just his voice. The air even seems hollow. Every external sensory is numb. Then, I feel it. The vortex of emotion is rising up and, there’s nothing I can do to keep it in at this point. I bury my face into my hands and squeeze out a few tears, and controlled anxious inhales and exhales. I try and hide my crying, as anyone might. Masquing it as exhaustion maybe, or just general decompression from the day. As I stood there and released the built up frustration and pain, I hear Dell ask what I might want for dinner. I couldn’t even respond. His tone was sweet, and caring – but I still couldn’t respond. Instead, I sobbed even harder. This time, not holding anything back.

Dell left the office lounge, and left me to decompress in peace, to kind of gather myself. He knew. After nearly a decade together, we know when the other needs to a minute or two of solitude, to release in our most raw form. That alone time to regroup with the King. A moment to recallibrate.

So, I prayed, and I wept what was necessary, threw a t shirt on, wiped my face, and then met Dell on the front porch. We stood there for a few minutes, and I inched closer to the warm sun still shining on a portion of the deck. We were puzzled. We wondered why my pain was still so great, especially at this point in the healing journey.

We are now at seven days. The tumors should be fully dead in three more days, can I go that much longer?

It’s early evening and we begin making dinner. I’m battling level 8-9 pain, but still carrying on, making zucchini spaghetti. Dell preparing his dinner, (for those who may not know, I follow a vegan diet, and Dell is a little more Westernized diet.) At this point, I couldn’t tell you what he had the night of October the 1st. All I remember is, making my bowl, and us sitting down to a dinner that lasted all of two minutes.

The longest night yet

So, we are sitting at the kitchen table, attempting to have a normal meal. And it hits.

In an instant, I slammed my bowl to the table and slid my chair back and screamed out. I stood up at the same lightning speed in which the nerve pain hit. It felt like a level 10 internal “Indian burn” of the entire genital area.

Dell offered to take me to the emergency room in that moment, and, I refused. Knowing what condition that I have, I figured there was a slim chance that my local hospital would know how to treat a rare case like me. There’s no way they could achieve my medical history from Emory in time. There would be virtually nothing they could do.

The failed dinner moment continues, with me in the tub now. The pain is relentless, it’s not stopping, even with the hot water. This night mimics essentially every sleepless, painful night we’ve been through since the procedure. I realize I can’t make my work day tomorrow.

The morning of October 2nd comes, and it’s not any bettter. Dell proposes emailing Dr. Prologo’s office, I do. Dr. Prologo calls me himself, encourages us to come to the emergency room at Emory at the John’s Creek location, so that he can see me himself and address the care needed. The pain was absolutely through the roof, and I knew the hour and a half car ride would more than exacerbate the nerve pain. But it simply had to be done.

So we drive, and I fight the verbal outcries that are a result of the shooting electricity and stinging pain shooting through the entire pelvic area. I silently wept in the passengers seat, half way leaned back. Dell drove calmly and steadily, despite the intensity of the pain episodes.

Finally admitted and eliminating the pain

Upon being admitted, seeing my visual pain level, and pulling my history, they were quick to help deliver much needed relief. This was my first time receiving Dilaudid. Finally, after tolerating seven days of tumor inflammation and screaming nerve pain, it was quiet. They also performed a CT scan, including both with and without contrast.

I stayed the night for pain management and observation. Twelve hours of staggered Diladid delivery began here.

I sleep pretty solidly through the night, for the first time in a week

During my night in the hospital, I remember being carefully checked on, but remember sleeping relatively undisturbed pretty much each hour. I would wake up in at least 45 minute, to hour long intervals, usually being the cause of semi dulled nerve spasms, my body needing a positional change, and a bump of Dilaudid.

The “Button” of relief

So, every eight minutes I could hit this button, and a small, pre-measured amount of Dilaudid would pulse into my vein, delivering the calm that my nerves much needed. I did spend this evening alone, as Dell had office work that needed to be done, and Tippet was back home too. But it was all okay, and we all actually slept soundly that night, despite being apart. I was finally relatively pain free, and Dell slept soundly knowing full well that his wife was the most comfortable she had been in a long time.

It’s now the evening of Thursday, October the 3rd, and Dell is now back at the hospital to hopefully retrieve me. We didn’t get clarification of discharge until 6:00 that night. My system seemed to be responding well to oral pain medication, since earlier pulling me from the Dilaudid pain pump. Myself, and my nursing team believed I seemed to be alright, and good to go for discharge.

Man was I was ready to be home.

I’m still healing

So, the bottom line is, I’m still not 100%, and may never be. It’s October the 8th, I’m officially fourteen days out from cryoablation, and still having “abnormal” amounts of nerve pain, and intense surges at that. I’ll be starting a steroid pack tomorrow morning – as Dr. Prologo believes it will help cut down on tumor inflammation. Targeting the conglomeration of nerve tumors that we did, we believe we “poked the hornets nest,”and irritated the countless other nearby tumors. We aren’t quite sure why the targeted tumors in the cryo treatment are hanging on unusually longer than most tumors do. Their death is supposedly ten days after treatment, and, well, things are…. still pretty darn active. I won’t lie. The explanation could lie strictly in the mutation. Maybe Schwannoma tumors don’t respond well to cryoabaltion. On me, it’s seemed to be the opposite of others’ success stories with this treatment.

There is a bright side, however

It is quite possible that the resiliency of my nerve tumors are just giving the cryoablation a run for its money. It’s still probable my nerves can recover tumor free, despite the latest scan not revealing any visual evidentiary proof of tumors shrinking. Time will tell.

Although my recovery is shaping up to be somewhat of this “up in the air,” and “how much longer will this take? ” scenario, there is still reason to believe that there is a purpose, for all of it.

God decided i’m the soldier for this war

Blessed be the Lord my strength which teaches my hands to war, and my fingers to fight. Psalm 144-1

Each war is waged differently. The warfare is determined by the soldier. From one soldier to another, all we can do is give God the glory, and trust that whatever pain or struggle that is needed to be endured, or the lessons that need to be learned – usually always have a greater impact on our soul than we imagined. The unforseen sticks in the spokes, mold us. The challenges, and hurdles are what tailors our character. The battles that are fought, sharpens the sword of our endurance.

Our will to keep fighting, honors the temple we are given. The determination to keep going, honors Jesus, who didn’t stop going when it came to us.

Keep waging that war my friends. If it’s the fight of your life, give it all you got.

#faithwithalimp #er #emergency #cryoablation #hospital #emory #ejch #dilaudid #tumor #schwannomatosis #nerve #nerepain #faith #drprologo #positivity #glasshalffull #psalm

12 comments

  1. Thank you for sharing your amazing story and testimony. It is so very encouraging. This fight is new to me. In fact, I havent learned what I am fighting yet. For certain is that I too will face the future without the full use of my leg. I pray that I can meet the war with faith and grace as you have.

    Liked by 1 person

  2. My name is Ann Robertson and our daughter was diagnosed by Dr. Rubenstein in 1979. Been praying for some relief from this insidious disorder. My daughter is also a warrior and had over 20 operations. God was good to us to find Doctors that at least knew something regarding NF. It as not been easy for her all these years. We are so proud of her. She is strong and we are all leaning on our Lord and Savior. I pray every day for all the people that are fighting this disorder. I will pray for your health and healing and peace that passes all understanding. My life verse since she was diagnosed is Phlip. 4 13

    Liked by 1 person

  3. Dearest Leslie, I have been thinking about you and wondering how you had been doing. Asked the girls at Serenity and they let me know that you left for health. I thought your blog was lost to me. Thankfully and for some unknown reason there were old text messages on my phone. I thought I had deleted all. Your blog was there in a text from last year. Strange how God works. That your blog would suddenly appear for me to see and read. I have to tell you I felt nervous, I felt doom overwhelmed what I was about to read. But as I read all of the overwhelming tribulations and pain your poor little body is going through. I also read about a woman of unbending faith in God. The strength you draw from the love of God is inspiring. To live each day in the light and not let the darkness destroy you. To wake up everyday to renew the fight for your life. To accept what may come with trust that are are where you are meant to be. I thank God for putting people in your life who love you no matter what. You’re a beautiful woman Leslie inside. I love what you have brought to light through the struggles And lifting up all of those around you with your words. I pray in the name of Jesus Christ that he brings you out of pain through the hearts and hands of the doctors caring for you. I will pray for you everyday. God Bless you and you husband. Love, Pam

    Liked by 1 person

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