December 10, 2018

Dear Friends now,

I originally wrote this blog last year around my first “Brainiversary” of my first epidermoid brain surgery. I debated for the longest time on posting this because of the vulnerability of my thoughts. I am hoping that my other “moid” friends who are following me along this path may find encouragement in what they are also going through. May you all find peace in Jesus in your trials.

Until we meet again,
Regina


November 22, 2017

Dear Friend,

November 25 marks the one year anniversary of my brain tumor surgery. Nearing the date brought a natural progression from reliving my thoughts and feelings corresponding to the days leading up to surgery day to gratefulness and thankfulness seeing where I am at now. I find myself reflecting upon the path to the acceptance of my “new normal”. My journey may seem done for now, but I know the tumor and the aftermath will be a challenge that will be battled with for the rest of my life here on earth.

One year ago it was hunting season and I discovered the traumatizing news of a giant tumor pressing my brainstem flat and squeezing my cerebellum to half of its normal size. Instead of enjoying crazy sister time away from my men, I confided the paralyzing news to her for comfort during the time of so many unanswered questions. Then two nights before my surgery, I tried choking down a Thanksgiving meal while staying at the other side of the family’s home. How could I keep up my “happy face” in front of my mother-in-law when I could barely eat? With her situation, we agreed she would never have been able to handle the news. To this day, she still does not know.

Fast forward one year to now, another successful hunting season came and went. I once more found myself in those same places, at those same homes. The memories of the trial came back as if to try and haunt me in a bad dream, eerily familiar, yet growing vague for the details. I briefly doubted the necessity of the risky surgery. This quickly dissipated as I back then briefly laid on the entryway floor after noisily falling down a flight of stairs in the middle of the night. I once more walked those stairs. Once more, I listen to the sound of a space heater humming in a dark bedroom. Flashbacks of the tears of fear and prayers echoed through my mind once more. So much has happened since then. So much more I have learned and experienced as well. God is so much bigger than all of this and I mentally have to set these hauntings aside.

I am so glad people took the time to pray for my situation. Even though the path was rough, I was able to see God show His lovingkindness in so many ways. The timing was incredible. The provision for a place to stay after the surgery, my children were older and more independent, not to forget how the insurance coverage and the technology could have played out so much different. Aseptic meningitis was my only complication. Even though I had a nasty headache for a few weeks that was undiagnosed, I was able to go home after only five days. I had no infections, spinal fluid leaks, blockages or other surgical issues that could have necessitated months in the hospital with several additional surgeries.

I climbed the first mountain in this lifelong mountain range. I had the feared surgery and now I am on the other side. So, how am I now? I have such a greater appreciation as to the delicate balance God created in every body system I have. I am so keenly aware of and question the source of the ailments when something is not quite right. Several “side effects” may exist for perhaps two more years of healing, while some may be permanent. I am developing a whole new level of patience and am learning to laugh at myself when my dizziness or balance issues arise. I now push myself to be more flexible and try to accept so much more unorganization when I forget things. I allow more time for activities and do not intensionally overbook myself. I live life at a much slower pace. I appreciate the ability to still work with my hands, knowing that next time my vision issues may very well prevent me from enjoying my activity instead of only slowing me down. I must intentionally work in downtime within my schedule.

I have to be honest, I sometimes questioned myself, “Was the surgery worth it?” At times I feel discouraged knowing some of the original symptoms that led to the diagnosis are still present, though in less frequency and intensity. Now that I have all but ruled out other potential causes, I concluded that was residual damage done by the tumor. Then I reasoned to myself that at least I prevented the symptoms from becoming more severe and I do have some relief, despite other nerve and muscle repercussions. The surgeon also reminded me that if I did not act, the tumor would have started affected my breathing and heart rate and all my functioning systems neck down. This tumor would have potentially caused a heart attack, kidney issues, or suffocating to death as it was pressing all those critical nerves along my brainstem.

Beyond the changes inside of me, now I also relate to other people differently as well. I feel I have a greater awareness of the heavy burdens people are secretly carrying. So many people are hurting out there, yet most of them still manage to smile. Perhaps I am to be the one who will listen and encourage them. Likewise, I have greater disdain for the vain activities that complaining people relentlessly consume themselves with, yet are still unwilling to make radical changes.

The next mountain is hopefully several years ahead of me still. I know the epidermoid will grow back. It is only a matter of time. A mere ten years ago, doctors would have only performed my invasive skull-based surgery if a patient’s life was at risk; especially if it was touching the brainstem. This is one of the newest and riskiest surgeries out there today, but techniques and technology are still being developed. I am concerned that next time I may not be able to rebound back like I did this time. I will be older then. Not much funding goes toward finding answers to this rare birth defect. Though it is not cancerous, many others have been gravely disabled or died due to its stickiness, regenerative abilities, or surgery complications. No sense worrying about it now. God brought me through 40 years of having this without even knowing about it, He can definitely see me through the next 40+ while I do know and deal with it.

Until we meet again,
Regina

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