I know. I’ve been quiet. I do want to say thank you to all that continue to reach out to me regardless of my level of updates and responses. To reach out and not expect much in return, is selflessness at its greatest level. It’s caring and loving unconditionally. It means the world to a person, especially someone in my situation. There is a lot to talk about, but not much to say if that makes sense.
For those who don’t want to or have the time to read below, we need your prayers. I have my first significant, post Gamma Knife MRI of my brain next Monday, June 9 – two days after we celebrate our Logan’s 2nd birthday. Please pray for guidance if the scans are not favorable. Please pray for peace, comfort and relief from pain and anxiety. Please pray for a brain lesion no longer present as well as no new lesions. We will update when we know the results. Thank you for your love and support.
It’s a psychological warfare presented by a Groundhog’s Day-like appearance. It’s a daily struggle with the unexplained pain, notion my doctor doesn’t believe the disease is gone, “disease-free” representation by scans which is only macroscopic in nature, and the constant smiling because my life is absolutely beautiful and the fear it could all change, again. I hide it, and I hide it well I think because it is not what defines me. However, this is a far cry from it not being present every second of every single day.
1 “Am I doing enough spiritually, emotionally, physically, and planning ahead?”
2 “What have I done to deserve this? Where did I go wrong in life? What can I do to improve?” – these three are questions with no answer. They are somewhat rhetorical and self-reflecting – these two questions are at the very root of every person suffering because they are what keeps us grounded and in the moment. They are the ones that allow us to be appreciative of the good and bad. They are not morbid in their entirety. Instead, they are ways, at least for me, to ponder on how can I better myself through adversity. I am trying, every day, to set an example for my family that life is what you make of it.
3 “Will my children grow up without their father and my wife without her husband?”
4 “What is this bruise? What is this pain? Can it be replicated? Palpated? How long has it been there? Has it changed? I have a headache, and it isn’t in the same location. What does that mean? I have LUQ, RUQ, LLQ, or RLQ pain. Why???” – these are what we face all the time. They are unavoidable, and we always visit the darkest place with the darkest thoughts. They are topics that we just brush under the rug and hope they resolve themselves.
It’s scary. Everything. Especially being off of treatment with a disease personally known to be slow but persistent; a disease not believed to be gone, but nothing we can do as far as treatment because of lack of measurable disease; a disease known to be dormant, and seemingly strike when I am able to move on for a moment.
I thought this would get easier with time. These scans. These consultations. The waiting and stress and anxiety. It hasn’t, and it’s a lot worse. We don’t feel it’s gone so suffice it to say it feels like a ticking time bomb. It’s like playing Russian Roulette with each scan – not IF this is the bullet, but when. For the first time, I hope and pray that the doctor we so much respect and hold to such a high regard with his expertise is 200% wrong. I hope his notion is just a guess and a wrongly felt gut instinct. Time will tell.
Please continue to pray. It’s such a blessing being off of treatment. Besides the anticipated daily chronic pain and other anomalies that I attribute to my highly invasive surgery, life is amazing. I don’t say normal because what is normal? Who defines it? No two lives are the same, and the term itself for any individual is fluid and dynamic. It changes from week to week, and even day to day. Truth be told, this is “normal” for us now. So, I call my life amazing, blessed, and wonderful.
Why the lack of updates? It’s simple. The inability for me to portray what is going on in the inside while painting a picture about what is going on in life as a person interacting with the outside world, including my family. It’s very hard to truly explain what this second life is. A diagnosis of any life threatening ailment is a rebirth of who you are. It literally and figuratively destroys your previous life. If given the opportunity, you spend the rest of your new life trying to cope and experience life in a different light. Daily struggles and pain become routine.
Updates, to me, are meant to update. It is my chance to lay it all out there. It is an opportunity to let you know the physical, mental, and spiritual turmoil that is going on. Unfortunately, these are merely descriptive words describing a highly emotional and physical situation – one in which I do not let define me. It’s not how I live my life. It’s most certainly not what controls my day. God has been very protective of us, and like everyone, I am truly indebted to God for the 5 years of second life He has given me post initial diagnosis. I continuously and without hesitation pray and beg for many more opportunities to live.
These updates are the truth, and I will always give it to you straight. It is important that who I am outwardly and what I am experiencing/dealing with internally are separate and distinguishable. I cannot deny the fact that this is extremely hard, devastating and exhausting. I cannot sugarcoat the situation nor can I pretend that life is always inspirational, uplifting, and full of defining amazing moments. It wasn’t this way without this disease. How could it possibly be any simpler with it? Rather, life is appreciated and welcomed; it is accepted as a gift no matter if it is a really good day or a really bad day regardless of the reason. We pray for another day, and when God grants us this day, it is very important to appreciate the day for what it is, and not for what it brings. I’ll take a week of pneumonia with one lung, two kids with viral and/or bacterial infections, and an exhausted wife taking care of us any day over the morbid alternative, and I say this with experience since we just went through this – twice.
We have been given another day today, and it is up to all of us to love it and live it no matter what is thrown at us. Life was never promised to be easy. It was promised to be gifted and full of opportunities to learn, to grow, and to share our lives. When we complain about a bad day, or a bad week or even month or year, are we ultimately saying that we don’t want this? It’s a very hard concept when a loved one is lost, and I cannot imagine the lifelong grief. However, I hope and pray that should this disease take my life that those continuing on in my stead realize that I am just a small piece to a very big and complex puzzle; that life does and will, and must, go on.
Every day is the beginning of a new life. Death, disease, hurt, and pain from yesterday cannot be undone – it is an absolute fact. What ever happened yesterday are pieces for the days ahead and how we shape the world for ourselves and those around us. Some pieces are much bigger, much heavier, and carry life altering emotions. Some pieces are smaller, lighter and slight redirects. Regardless, they cannot be undone, but learned and reflected upon.
We love you all. You are family to us, and we care about you so very much. Thank you for being on this long journey with us. We hope and pray it becomes a very lengthy journey for many years to come. Thank you for being in our lives, for praying, for understanding, and for continuing to support us financially, spiritually and emotionally. You define the phrase “angels on Earth”. Thank you!