How did we get here?

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.

The constant:

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!

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14 Responses to How did we get here?

  1. Matt deSilva says:

    Ryan,

    God bless you man. I struggle daily with my own issues and I cannot tell you how inspiring you are. My cross to bear is nowhere the level of yours and I think to myself, what a brilliant individual you are. Often I think of how you would handle thing that get thrown my way. What strength you show and what joy you take from each moment in life. It may be that I do not see the end and that is the reason for my own inability to exprpess gratitude for the everyday little things like a sick child who wants to snuggle or a friend who reaches out; however, through you I am reminded of how important the people in our lives are and for you, I thank God.

    Peace be with you,

    Matt

    • Laurie deSilva says:

      Yes. I think it’s safe to say that you, Ryan, are our touchstone… you help us see things “clearly” when we feel cloudy. Because you are courageous enough to share your story, the good, bad, scary, beautiful… you guide us with wisdom we “think” we already know. Then, we read your words and we FEEL what know. It’s the FEELING that matters friend, thank you for sharing your words, your love, your fears, your strength, for all of it. For that is what makes us stronger, for you! Always Praying Ryan, ALWAYS!!
      Love
      Laurie deSilva

  2. Leann Kirkendall says:

    I have been wondering about you as I pray for you twice a day or more.
    Thank you so much for writing! Less than an hour ago I fell over a rock in the alley as I
    came back from the post office. It all happened in a matter of seconds, but it will change
    my life temporarily as I have scuffed up hands and face and will need new glasses. The
    sore ribs and wrist will go away. As I read your letter, I realize these are all minor. I
    knew that before I read your letter, but it’s for sure now. I will keep on praying for you
    and Andi. God has blessed you with additional time and you are thankful for that…we
    are all thankful. You are loved by many, including us.

  3. Rachel Peters says:

    I will continue to pray for you and your family. <3

  4. Lea Hulshof says:

    wow and wow…. so blessed to hear from you… as always your posts uplift us N to point out how special each day is…. even tho you are resting from the FB more, we are praying N thinking of you N family each day.. prayers go up even before you request them.. my sweet hubby asked the same questions , N what did I do to deserve this… of course it NOTHING…I explained to him, Ya know, Jesus asked the same question of HI S Father, God…. when He was praying, take this from me, but then knew His will was not the same, our plans are God’s… I said, would take this burden N ASC from you if God allows. Being sweet hubby was, “no, I wouldn’t let you…. nor did God let me….. so as you are doing, take each moment at a time N know you thank God for every moment being with family… MY prayer is for healing for you . His answer is Yes, maybe, later in my time. Memorial day 2013 was admission EMR N later diagnosis ASC. difficult to relive the days….. my you feel God’s peace N arms around you……everyone sends love, prayers N blessings, Lea

  5. Andrea Papadopoulos says:

    Ryan,
    Thank you for being so incredibly brave to share your updates, your story and your fight with all of us. You continue to inspire SO many people and will never truly understand how grateful we all are for YOU! Keep on fighting… We are all right behind you. Xxoo

  6. Liz says:

    Ryan,
    You have always been such a great inspiration for me and a uplift for me, I want to try and do the same for you.
    You & Your Family are in my prayers.
    Romans 8:28
    And we know that all things work together for good to them that love God, to them who are the called according to his purpose.
    Proverbs 17:22
    A merry heart doeth good like a medicine: but a broken spirit drieth the bones.
    I hope this will be some good medicine for you 🙂

    A little girl was talking to her teacher about whales.

    The teacher said it was physically impossible for a whale to swallow a human because even though it was a very large mammal its throat was very small.

    The little girl stated that Jonah was swallowed by a whale.

    Irritated, the teacher reiterated that a whale could not swallow a human; it was physically impossible.

    The little girl said, ‘When I get to heaven I will ask Jonah’.

    The teacher asked, ‘What if Jonah went to hell?’

    The little girl replied, ‘Then you ask him’.

    ~~~~~~~~~~~~~~~

    A Kindergarten teacher was observing her classroom of children while they were drawing. She would occasionally walk around to see each child’s work.

    As she got to one little girl who was working diligently, she asked what the drawing was.

    The girl replied, ‘I’m drawing God.’

    The teacher paused and said, ‘But no one knows what God looks like.’

    Without missing a beat, or looking up from her drawing, the girl replied, ‘They will in a minute.’

    ~~~~~~~~~~~~~~~

    A Sunday school teacher was discussing the Ten Commandments with her five and six year olds. After explaining the commandment to ‘honor’ thy Father and thy Mother, she asked, ‘Is there a commandment that teaches us how to treat our brothers and sisters?’

    From the back, one little boy (the oldest of a family) answered, ‘Thou shall not kill.’

    ~~~~~~~~~~~~~~~

    One day a little girl was sitting and watching her mother do the dishes at the kitchen sink. She suddenly noticed that her mother had several strands of white hair sticking out in contrast on her brunette head.

    She looked at her mother and inquisitively asked, ‘Why are some of your hairs white, Mum?’

    Her mother replied, ‘Well, every time that you do something wrong and make me cry or unhappy, one of my hairs turns white.’

    The little girl thought about this revelation for a while and then said, ‘Mummy, how come ALL of grandma’s hairs are white?’

    ~~~~~~~~~~~~~~~

    The children had all been photographed, and the teacher was trying to persuade them each to buy a copy of the group picture.
    ‘Just think how nice it will be to look at it when you are all grown up and say, ‘There’s Jennifer, she’s a lawyer,’ or ‘That’s Michael, He’s a doctor.’
    A small voice at the back of the room rang out, ‘And there’s the teacher, she’s dead.’

    ~~~~~~~~~~~~~~~

    A teacher was giving a lesson on the circulation of the blood. Trying to make the matter clearer, she said, ‘Now, class, if I stood on my head, the blood, as you know, would run into it, and I would turn red in the face.’

    ‘Yes,’ the class said.

    ‘Then why is it that while I am standing upright in the ordinary position the blood doesn’t run into my feet?’

    A little fellow shouted, ‘Cause your feet ain’t empty.’

    ~~~~~~~~~~~~~~~

    I LIKE THE NEXT ONE IN PARTICULAR

    The children were lined up in the cafeteria of a Catholic elementary school for lunch. At the head of the table was a large pile of apples. The nun made a note, and posted on the apple tray:
    ‘Take only ONE. God is watching.’

    Moving further along the lunch line, at the other end of the table was a large pile of chocolate chip cookies.

    A child had written a note, ‘Take all you want. God is watching the apples….’

    ~~It doesn’t matter how many people you send this to; just remember if it made you laugh, your friends will laugh too.

    <3 God Bless You <3

    Liz

  7. Jac says:

    Thank you for sharing your real-life story with us. You inspire me whenever I read your updates. *I’m sorry that you have to fight this awful fight*. Prayers to you and to your family. God bless.

  8. Renee Levasseur says:

    I’m so glad you decided to post. I pray for you every night and have been wondering how things were going. God has a plan for you and His plans are so much wiser than ours. We don’t always get the answers we want…but God is always at our side. I pray for your physical and emotional healing. God’s Blessings

  9. Joy Sullivan says:

    Ryan,
    Thank you again for being a true inspiration! You do live and breathe your words!
    Thank you for asking about my mom, you still think of others, in spite of what you are going through. LOVE shines from you!
    Will continue to pray for you and your family!

  10. Kristin VanZanten says:

    Thank you for your honesty. No, scans don’t get easier, and I distinctly remember that “waiting for the gun to go off feeling,” it’s truly hell. You’re not alone, God’s got you. God’s got Andi. And God’s got Logan and Landon.
    Love you guys.

  11. Cindi Dickey says:

    It’s great to hear from you, Ryan! I’ve been dealing with some difficult things the past couple of months…life changing things. It just goes to show you that God often has a different plan than we do (did). I know that when my friends reach out to me, it means so very much. When they remember what I’m dealing with and offer their support, even if it’s just that thought…or prayer. Please know that you’re never far from my thoughts. Praying for super wonderful, awesome scans on Monday to match the man, father and warrior that you are. Have a wonderful birthday celebration this weekend with your little men and your lovely wife, friends and family. ENJOY!

  12. Christine says:

    Yes, thank you for the update. Continuing to pray for you and your precious family, Ryan. Your posts are always uplifting and encouraging for us, as well as wonderful reminders of the most important things in life. Praying for good news on Monday.

  13. Kathy Schlaud says:

    June 9th Still praying for you and your family:)

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