From Left Field…….

­­­Good morning everyone. I hope you are all having an amazing week, and that you continuously can find something to smile about.  This life is a wild ride, and we never know when we will get a break and a chance to catch up with what is going on so make the best of it.  As for us, there is no breather in sight yet but for reasons somewhat unforeseen.

First and foremost, the most exciting aspect of this week’s trials and tribulations is that the PET/CT came back as clear.

If you want to read the official PET report:  October 14, 2014 PET

This is very exciting news, but one that was very short-lived – if you can say it was celebrated at all.  Please do not confuse any of this with us not being grateful and blessed for this amazing result, but had you noticed I did not use the term NED, it is because we were hit from left field. When that happens, I first shut down.  I sulk for a bit.  I confer with those closest about what to do, and we go into scheduling and planning.  We are still in scheduling and planning mode.

With that said, the day of the scan went very smoothly. Rather, the morning went as smoothly as I anticipated.  I had a very nice conversation with the technician who is fighting her own demon of ovarian cancer.  After so many scans and so many years, we all start to become a big family and openly share our lives.  Following a very routine scan, I had a nice, long conversation with a nurse turned amazing family friend about life, kids, etc.  I was taking my time because I didn’t have much to do since I couldn’t be around my children until later that evening due to the radioactive nature of my PET injection, its half-life, and the rapidly reproducing and growing nature of my children’s normal cells.  I felt good.  I felt as if there was a shimmer of light, and things might calm down for a bit.

I was wrong.

The very moment I sat in the car of the parking garage, I received a phone call from Houston. It was the generic number for them, but it was a call I was expecting.  However, the news I was not.  I had no reason to expect it.  The MRI was a done deal, or so it seemed.  The week prior the one physician we could not meet with was our neurosurgeon, Dr. Lang.  He was out of the country for the week so we would have to wait for his interpretation of the scan.  I emailed his team at the beginning of this week for any sort of update, and this was the call I was expecting.  We had no reason to believe anything would change as the report was read as just watch the large lesion.  Our radiation oncologist, Dr. Li, was not overly concerned about it.  Lastly, Dr. Ravi voiced no panic over the lesion in question.

However, Dr. Lang disagreed wholeheartedly with all parties involved.  His nurse, Cheryl, was the one I spoke with and whom delivered this news.  He strongly believes the large lesion progressed and wants to operate on it soon.  They wanted to schedule the surgery right then and there, as I was just getting out of my PET scan sitting in my car.  I still had no idea about the PET report, but here I am about to schedule open brain surgery.  What.  Just.  Happened?!

I told her I would call her back later as I had many emails, texts, and phone calls to make.

I called my Houston oncologist, Dr. Ravi.  He didn’t answer, but responded with a text a few minutes later wondering what was wrong and said he was in Germany.  I informed him of the day that turned drastically south, and he sent out an email for Dr. Lang to contact him.  I am unsure if they ever spoke, but receiving a text from Dr. Ravi that says “Don’t start the temodar.  Go to surgery” says enough for me.

In summary, the PET report was clear, but I will now be having open brain surgery in just 2.5 weeks down in Houston.  I have a consult with Dr. Lang and anesthesia as well as a mapping MRI on November 3, and the surgery is scheduled for November 4. I am planning on being down there, recovering, for most likely 10 days to be on the safe side. I know there are a lot of questions.  I have a lot as well, but they will hopefully be answered as time moves forward.  In the meantime, we have to scramble to get things taken care of and have all our affairs in order.  I no longer have my flight benefits with my airline so our medical costs just went drastically up.

After 5+ years, not a single thing in regards to my case is getting easier. We are actually traveling more now.  As a side note on all of this, we need help, and it takes a tremendous amount for me to admit this.  Some amazing friends are getting things underway for us.  If you have any inclination to help or have any ideas of your own, I put down my pride and humbly ask for any assistance.  I will not bankrupt my family.  I just cannot do that to them, and we need to get ahead of this before it’s too late. As for me, I have surprisingly not shed a tear over this yet.  Denial?  Possibly.  Honestly, I think it’s just shell shock right now.  Ask me how I’m doing on November 3 – the night before surgery.  I may paint a different picture.  I just want my family taken care of.  It’s all I ever want.  It’s all I really ever need to get by on this journey, but it is taking a toll on our family as of late.  Please pray for peace, understanding, and continued faith.

This news is shocking and disheartening to say the least, but it doesn’t take away my “every day”. What do I mean by this?  I can still walk. I can still take care of myself and help my wife raise our boys.  I can still take Landon to preschool every day, and watch him learn and grow.  I still have my precious one-on-one moments with Logan while Landon is at school.  I can still exercise, and I feel great physically.  It is not going to take me without a fight!  Or should I say war since it’s been so long of a battle?  Either way, I still have a strong will to live.

We are blessed beyond all measures in the grand scheme of things. After the shock, this surgery itself is a blessing.  Not all brain tumors are operable.  Not all brain tumors are in a relatively “safe” location as mine is.  It is still a very serious surgery, and it most certainly doesn’t come without severe risks.  However, it’s the course we are plotting, and we will do it together. One day at a time, and thankfully, we are not in this alone.  Not by a long shot.

We thank you for your patience in all of this.  We will update you as things unfold.  If you have any questions, or any ideas on how to help, please let me know.

We love you all so very much.

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11 Responses to From Left Field…….

  1. Nancy Klaus says:

    Ryan,
    You know you are in my prayers always for you and your family. Take one day at a time and God will be there. I have to keep saying that to myself now, with Kim’s new diagnosis so can kind of feel what you are going through, although, not from a patient’s point of view. Check for Angel Flights. Keep us posted but above all, know that you have my thoughts and prayers going with you along with so many others. Hugs and love.
    Nancy

  2. Mandy says:

    Oh Ryan… I wish I had the words…
    I’m thinking of you all, praying every day and am constantly astonished at your constant faith, strength and compassion. You are amazing and you inspire me with every word you say. You make a difference for so many.
    Hugs and prayers….
    – Mandy

  3. Laurie deSilva says:

    Ryan. Considering the race of my heart right now and the range of emotions I felt simply reading this, I will not pretend for one second, to understand how you feel. What I will do is continue to stop what I’m doing, every single day, close my eyes for you, and pray. That I can do. I will pray for both healing and financial peace. I will send all of the good I can from right field to your left field. So many people will. So many people love you. Your words have so much power and have helped so many, we will lift you up and multiply your good.
    -Laurie

  4. Cindi Dickey says:

    Ryan…Buddy…you are amazing. And you are in God’s gentle embrace, as are Andrea, Logan and Landon. I am grateful that God is looking out for you to place on Dr. Lang’s heart something that was not apparent to any other doctor. I will be contacting Melissa to see how I can help. I love you.

  5. Rachel Peters says:

    I’m so sorry Ryan, this isn’t the news any of us were hoping for but just like everything else you’ve gone through, you will make it through this too. I’ve never met such a strong individual in my life. I can’t say that I would be as positive as you are if I were in your shoes. Stay strong, as you are very inspiring…… and as always, I will keep you in my prayers.

  6. Kathy Schlaud says:

    Stay Strong Ryan, You have many prayers surrounding YOU and your FAMILY :)

  7. Cyndy Gusler says:

    Ryan, we live here in Houston and are friends with Danielle Slot. I was just asking about you the other day. Glad I’m getting an update directly from you. So what are your practical needs that we can help you with while you’re here in Houston? Is your family coming? Do they need a place to stay, meals, money for parking? We have a group of moms and ladies that can band together and get some items that you need. We can come to the hospital in shifts and be with you and your family, praying and encouraging. Tell me what you need and we’ll get it for you!!

    • Kay Routh says:

      Count me in to help as part of Ryan’s Houston support team! I also know Danielle and you just tell us what you need and we will make it happen. Continued prayers for you, your family, and your doctors.

  8. Julie DeMarco says:

    Hi Ryan
    Not sure if you remember me. I’m Julie DeMarco and live across and down the street from you. My dog Lily loves Mo!! I have been following your progress through Laurie deSilva’s FB posts (thanks Laurie!). I must say you are one of the strongest, courageous and faith filled person I have ever met! That being said, I will faithfully pray for you and your family for all your needs to be met especially complete healing, physically and emotionally. I would love to help out any way I can. Watch the boys, walk Mo, cook a meal, clean your house, sit with Andrea, etc…So glad you are reaching out to people for help. It is God’s desire that we help one another and you are allowing us to not only serve you but to serve God too!! Can I get an AMEN?!! : )

  9. Jason Vandergriff says:

    Hey buddy, let me know if you need any of my Eagle buddy passes. You know it’s only standby, but if you need them, they’re yours. I haven’t been using them, so if you need some, please don’t be afraid to ask. We’re praying in earnest for you and your family.

  10. Susan Goss says:

    Ryan, I pray for you and your family every day. I was saddened to read that you need this surgery. I will pray for a successful, uncomplicated surgery and hope with all my heart that you will soon after be home with your wife and boys. I am so glad you have an amazing amount of love and support flowing to you! Reading your positive, faith-filled posts have had a great impact on me and I try to enjoy each day to the most and be grateful. Your friend, Sue.

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