fREEZING multiple nERVE TUMORS
So Tuesday began with a lot of anxiousness, nervousness, and some mild fear of the unknown. I was more nervous about this procedure than I was for my surgery last year. The crazy thing is, there’s really no comparison between the two. The surgery that I had last November left me with a huge incision, and sliced up stomach and groin muscles that took months to heal. The Cryoablation was far less invasive, and didn’t require large cuts into my flesh. But I still couldn’t shake the emotion, or some of the worry I was experiencing. I think it’s due to the fact that I am such an odd case, sometimes boundaries are pushed, guidelines are improvised, and general standards are slightly bent.
tumor destruction : COMMENCED
The entire nursing and anesthesia team that accompanied Dr. Prologo were nothing short of amazing. They were caring, thoughtful, and attentive. I really like the Emory hospital at John’s Creek, and actually, both Dell and I prefer to travel to this facility rather than downtown Atlanta. Not only is it a closer destination, but, the hallways and the rooms seem brighter. It felt optimistic. I had been nervous up to our arrival. I’m not entirely sure if my anxiousness had calmed down that significantly, or if I was mostly just delirious after not having eaten in 19 hours. By 3:00 p.m, my IV was in, I was prepped, and we were rocking and rolling towards my procedure room.
Wished it were possible to show you guys what I saw upon being wheeled into the Cryoablation room, before it was night-night time for Leslie. But, the room set up, the CT machine with all the massive amounts of gadgetry and medical staff- was pretty impressive. Did a drop link that somewhat shows part of what the procedure room looks like, but doesn’t really do it justice as far as showing what all components are involved. Who knows, might have to have another Cryo procedure at some point in my life – and I will be much better prepared. I’ll try and get an “in the moment” picture.
An hour and a half, and one frozen Pudendal nerve later – I was positively freezing in recovery. I hadn’t opened my eyes yet to know if I was even in recovery. I was just shivering, somewhat hearing voices. I felt like I was half way dreaming. I barely opened my eyes, seeing dimmer lights than what I previously remembered seeing in the procedure room. Slightly confused where I was, and trying to get my wits about me, I opened and closed my eyes a few more times and saw various and assorted beds, next to mine. Many different nurses, beeping machines, and then my recovery nurse, by my bed. Immediately upon my being awake, she asked me how I was, and all I could quietly mutter was, “I’m cold and hungry.” She quickly returned with three heated blankets, and piled them all on top of me. The weight and the warmth felt so good. She asked what juice I wanted to drink, and came right back with cranberry juice on ice. Despite me still shivering, it tasted so good. Had a couple bites of graham cracker, but, made more headway with that cranberry juice than anything. The sweet beverage with the tart twang finished waking up my senses, just about every sense but the pain. That would come later.
They wheeled me back to the room I initially started in, and there sat Dell, waiting for me. I was still pretty darn cold, my guess was it was just a side effect from the Cryo. Dell kind of pulled my covers up around my neck, nestling me in more than I already was. He would gently lower my cranberry juice down to my mouth, so I could easily sip. They didn’t keep us for too long after recovery, maybe an hour or so. During that time, we did get to see Dr. Prologo before being discharged. He said he was able to successfully freeze the Pudendal nerve, and by default, about eight nerve tumors were frozen in the process. We were told that it takes about ten days for the tumors to die, and then of course, around six weeks for nerve regeneration.
Before we knew it, I was getting dressed and on my way out the door. While Dell went and got the car, I waited with the nurse who wheeled me outside to meet him. Man did that warm sunshine feel oh so good.
I wasn’t really prepared for the week that followed
My assumption is that because I’m that rare case, the “day or two” down-time, really isn’t applicable to me. I had taken two days off from work, post procedure, just to make sure I would be good to go to work Friday and Saturday.
That kinda didn’t happen.
Wednesday, the day after my procedure, wasn’t all that bad. Some moderate nerve pain, nothing too crazy. It was manageable. I thought for sure, knowing I still had Thursday to rest and finish recovering, I expected I’d be good to go.
Then, Thursday afternoon rolled around. It. Was. Relentless. It absolutely didn’t stop. All night Thursday I screamed, and I cried. I couldn’t sit down, or lay down. I paced around the house, and I just took it. I leaned against walls, and door frames. I slouched over the bathroom counter with my head in my hands. I wasn’t allowed to soak in a tub, but I was able to shower. So, I stood in the shower, wearily leaning against the shower wall. Totally worn out and unable to move to a different position, I wept. The silent crippled tears rolled down my cheek, while absolutely blasting the areas of nerve pain with piping hot water. The Gabapentin was maxed out, the Advil wasn’t cutting it. Dell never left my side the whole time. We didn’t know what to do other than to repeat the shower thing several times. Finally, Friday morning, around 4:00, I passed out from exhaustion and pain.
It’s the weekend and i’m not working
It’s Friday morning, and I wake at 7:30. I’m groggy, sleepy, but it’s already starting. I should be already awake and getting ready for work – and I’m starting this day with 600 mg of Gabapentin, and standing in the shower. I’m exhausted, my mental and physical stamina are weak, nothing is working, and I’m not sure if I can handle an entire day of what was endured Thursday night.
At this point, I am now realizing that what I’m feeling… are the tumors dying. And let me tell you guys, it’s off the Richter scale. Through this journey, I’ve felt a lot, handled a lot, have even been able to masque a lot – but actually feeling nerve tumors die – is about the most painful part of Schwannomatosis that I’ve felt thus far.
Friday continues. It’s still going. My body is weak, my spirit is weak, the cynicism and negativity are creeping in. I’m 100%, positively limping at this point. It’s pretty low. I’m surrounded by my husband and my parents now – and I’m reminded that my endurance meter is still full, regardless of the pain, I’m reminded that I have fight left.
Let the warrior within take over
For You have armed me with strength for the battle; You have subdued under me those who rose up against me. Psalm 18:39
Friday night, I sleep.. finally.. for a good six hour stretch. Many ups and downs, yes. But there is some sleep.
Saturday, however, it was a copy and paste from Friday. The weekend continues, Sunday, pain – again. Today, (Monday).. pain, still. Honestly, some of the most intense surges I’ve felt since last Thursday and Friday, have been Sunday and today.
When able to sit, this has been me – and this girl hasn’t left my side. Whether I’m on the couch, or in the bed, this girl is close.
Keep your eyes forward
Today, I wish I could report no pain. I wish I could report that I’m “feeling better.” I don’t think anyone could have really anticipated what my post-cryoablation recovery would be like. I’m the first of my kind. Breaking barriers, and giving students a case study to read about, hey.. it’s the least I can do.
I can’t report I have less pain. Not yet anyways.
There is progress in pain, there is hope in hopelessness, and there is faith able to be found in something as small as a seed. Sometimes, that’s all we need.
Although we cannot see the future, or see God’s Plan, doesn’t mean there isn’t an awesome play out to what He’s got going for us. The road is gonna be rocky and unpredictable, the challenges will be hard, and the light at the end of tunnel is going to seem really far away sometimes, but, we’ll get there. Eventually, that long dark, twisted tunnel of surprises, moments of being lost, and times of doubt – will give way to the Glory we bring the King.
It’s easy to question, or speculate why certain people are chosen to bear an affliction. I just like to refer back to some scripture that I found awhile back, and believe that :
Jesus answered, “Neither this man nor his parents sinned, but that the works of God should be revealed in him.” John 9:3
Jesus said this, and then healed a blind man.
I believe that God works through really unfortunate, bleak places – because that dark tunnel is the perfect place for God’s Light to shine and be seen by eyes that are attuned to the dark. Will God eradicate the rest of my nerve tumors? Will loved ones with cancer and other ailments be healed? I can’t answer that.
But I can say, that it’s worth it to stay in the fight, and keep the faith. Don’t give up. Your miracle might be around the next bend.
Keep going, limp if you need to, but keep your eyes forward, dear friends.
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