MRI Results…

The preamble

In the last three weeks there have been a host of new symptoms developing in my body. I don’t know if I was ever fully aware of how long the list was until we actually wrote it down in preparation for today’s appointment with the oncologist.

  • Terrible night sweats and hot flashes throughout the day
  • Creepy body spasms that happen as I sleep
  • Random swelling in feet, hands, face, and legs
  • Random tingling/extra numbness in legs or feet (different than my ‘normal’ leg/feet numbness)
  • Almost daily hot and throbbing headaches that last only about thirty seconds
  • Debilitating back pain
  • And some issues with urination and such that I won’t talk about extensively here!

So we expected some bad news…in fact, we almost hoped that there would be some kind of explanation for the developing symptoms. What we both genuinely expected was that the lower new tumor had grown significantly. This wasn’t the case.

The tumor update in all it’s terrible glory:

At this point in time virtually my entire spinal cord is surrounded by a ‘tumor sheath’. I don’t currently have the actual vertebrae count, but it is most of my spinal cord and it has a layer of tumor around it and the best way I’m finding to describe it is with the word sheath or casing. Additionally there is a clear tumor mass where my original surgery once was. (to clarify this point, up until now they have been able to identify that there was a growing mass here but it could be tumor, it could be radiation damage, or it could inflammation. Today, for the first time it is very clearly and undeniably tumor growth) So we went from one tumor four months ago, to three tumors two months ago, to…well, I’m not even sure how to categorize where we’re at now. One giant tumor who is attempting to strangle out my entire spinal cord.

Treatment options

This is pretty radical growth in only a two month time period and necessitates changing our treatment approach.

Regarding treatment we will make a decision within one week. We need to move quickly but there are two factors that inhibit this. There are quite a few potential clinical trials that are very reliable and very hopeful (the reality is that clinical trials are not what they once were even a few years ago. They’re much safer, more successful, and more reliable than they’ve ever been before.) but a clinical trial would require waiting about a month to start…and we’re not sure we want to wait that long. The next, and likely option, is to use another drug called Avastin. This drug has been very valuable for central nervous system cancers and is not a bad option to pursue. Regardless it is sad to see one more thing crossed off our list of attempts:

  1. surgery
  2. radiation
  3. daily temodar (chemo)
  4. stronger monthly temodar (chemo)

The second factor is that we’re still waiting for results from an emergency brain MRI that I had done today. Somebody along the way goofed up and I didn’t get that piece of the scan done prior to our appointment today. So now we’ve got to wait until my doctor gets the results and calls me this evening with more information.

Where we’re at

I wish I had a good answer for this. I wish I had something inspirational to say…ok, lets be honest, I could very easily drum up something inspiring right now, I’m pretty sure of it. But I don’t want to. I don’t want to downplay just how shitty this news is. It is. It’s just terrible news. This doesn’t mean that I still don’t have hope that healing can happen. This doesn’t mean that I don’t believe that God is and will continue to tell a beautiful story in my life or death. This doesn’t mean that I’ve lost hope. It simply means that I’m sad and I don’t want to write that off, I don’t want to artificially push through it, I don’t want to disengage my emotions, I don’t want to do a disservice to the reality of where we are because I truly believe that if I’m unwilling to recognize hell for what it is then I’m less able to recognize its transformation into goodness when/as it occurs.

Pray for us as we talk to our kids about it. They knew that daddy had scans today and so we’ve made ourselves accountable to share with them results.

Thank you for your love and support.

peace.

44 thoughts on “MRI Results…

  1. Ryan, I know you via friends & love you in your battle. I pray for you every time I think of you and ask for God's healing and comfort for you and your family. There are never the 'right' words but I hope that the Spirit can convey my sincerest blessings and yearning for your soul's peace. I will someday- whether in this world or beyond- be able to hug you and thank you for your courage.

  2. Rybeeee,
    My phone rang as I was teaching a Fire Science class at the college and it was my wonderful sister Brenda and I said "oh SHIT" this is not going to be good. And it wasn't. One of the students asked after I hung up, Lt. Cooper, you o.k? and I said no I am not. He then said "you look like you got kicked in the NUTS!". That said it all.
    Are prayers are with you and the fam.
    Love,
    Uncle Rick

  3. Thank you for being strong enough to write to us. I pray that the Lord would give you the answers for the plans of the future in your treatment. I pray for PEACE and the Lord's arms around you and your Family…….Praying with Love, Kim Stokes

  4. Ryan, You don't know me but I'm compelled to write to you tonight. Your dad was one of my ministry mentors growing up each year at the Yosemite Family Encampment. I have a great affection for your family and although we have never met, my heart is aching–actually, it's more my gut is feeling this news–so terribly deeply. I have no great words to share except that I love your family and am praying for God to heal you. I can't imagine how exhausted you all must be so I'm also praying that God will carry you in a special way….that He will attend you and hold you and that He will give you what you need when words fail. For what it's worth, you are loved, wept for, celebrated and admired. bw

  5. my heart is so heavy its so hard to think possitive it is fully and completely unfair. me and my wife have wept and prayed for you guys. i love you like a brotha not a brother but like black people cause i think its stronger feelings that way: pat pat on my chest kiss my two fingers and hold them out in your direction exclamation exclamation exclamation

  6. When I read this I had these thoughts: he's being a strong man, mighty in God's power; an example to us like Job from the bible. The following quote leaves the first part out for effect, "…God is and will continue to tell a beautiful story in my life or death." Thank you for sharing. We're praying for you, and won't stop.

  7. Read your post through a friend of a friend of a friend on facebook – my mom went through cancer treatments a couple of years ago and she is living breathing proof that miracles happen. You and your family will be in my prayers through this difficult journey.

  8. You're right to be sad and to be angry. And to trust still. I don't know what else to say, but I hope you'll continue to share your words.

  9. Ryan,
    My heart is heavy for you as well. The strength and courage you have for sharing this incredible ordeal leaves us all speechless. I pray our words wrap you in warm LOVE through it all. We will continue to share your journey with other friends and family to bring more people in to pray. Thank you for sharing with us Ryan. We all love you very much!

  10. I'm praying for you and your family Ryan. Can't imagine what that situation must be like, but you are strong, and I know God has a reason for all of this. I will continue to pray for healing for you, and peace for your family.

  11. Ryan and Jessica, Our paths have not crossed very much, especially in your adult years, but I've had many crossings through the years with your parents. I've read your story with much interest and have prayed for you and will continue to do so. It is a privilege to pray for healing, peace, boldness, comfort for you. God, bless this young man and his family. Will Fox

  12. Ryan, keeping you in my prayers my friend. Asking all my Bikers For Christ partners to keep you and your family in prayer as well. Mike

  13. My heart goes out to you! I can not possibly understand what you must feel. In fact I'm here to try and give you another bit of info that might give you some hope during these impossible times. I have lost several family members in the past 4 months and I believe this therapy could have saved them because it saved a friend of mine. The therapy is called Gerson Therapy. My friend had gotten pancreatic cancer and tried all of the traditional american medicine. When the finally told him that there wasn't much hope he tried one last treatment which was the Gerson Therapy. It 30 days after starting therapy he had his cancer completely in remission. When the doc asked him with shock and dismay what he had done, the the doc's response was, "oh well, we can't sell that here." This treatment has a 60% success rate and can be done along with traditional medicine. It does not work against your bodies immune system, its is cheap and cures cancer so that is doesn't come back ever! I invite you to watch the documentaries on this. If you have Netflix please look up, "DYING TO HAVE KNOWN," and "THE GERSON MIRACLE." I hope you consider it. I always tell people about it because my friend has now been cancer free for 5-6 YEARS! I believe in it. I will pray for you. I wish I could cure you hopefully this treatment can. http://www.youtube.com/watch?v=DoUl7F7dWdE

  14. Ryan thank you for sharing your journey and for being real. You and Jessica and your beautiful children are some of the strongest and amazing people I have ever met. TJ and I pray together and you will remain in our prayers. I can't think of anyone who deserves to to be Blessed more than you!

  15. I don't really know what to write, after I've read your story… I saw this link on a friend's facebook page, and for some reason, I felt compelled to come here, to read each blog~ this is a little unlike me, I don't go to links often and read everything in front of me. As I'm writing, even right now , I'm praying, asking the Lord what the reason was that He brought me here. I can not imagine what you and your family is going through~ But you and I both know that God knows. Isaiah 40: 27-31… " Why do you say, O Jacob, and complain, O Israel , "My way is hidden from the Lord: my cause is disregarded by my God ?" ( I am NOT saying you are complaining my friend~ please don't read it that way!! :) ) ' Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary, and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
    For whatever reason this is happening, for what ever cause it is for- Jeremiah 29:11… " For I know the plans I have for you, saith the LORD…" and our ways are not His ways. But I believe and I trust that you are in the Master's hands, your wife and your children are too. God bless you and keep you, and cause His face to shine upon you. You never know , through all that you are going through, whose life you have touched, who needed to see the faith of God in you. I will keep you in my prayers.

  16. Ryan, I am asking God right now to bless you, Jessica and all our family. We will ask our prayer group at NW Church to be praying for you too. Your life and your faith are a light for all of us.

  17. Ryan it is so unbelievable this crazy path you have been on…I'm so saddened by this news. Honestly, I'm not going to pretend that I understand or that I'm okay with it. I keep asking "why" this has happened to someone with such an amazing heart filled with so much compassion for others. I know He has a plan, but this reality is just so hard to accept. My heart is aching for you and your family. I love you and am so thankful for you. We will continue to pray for you and your family. Hang in there my friend, sending big hugs and prayers your way. Lord, PLEASE bring healing and peace for Ryan we need him here spreading compassion and your word .

  18. Hard to believe, Ryan. Simply hard to believe. Thank you for who you are, who God is in you, and for what you are doing in that place.

    Most of all, thank you for sharing this painful journey with all of us and reminding us what authentic faith looks like through the mess of this life. Praying.

  19. Just heard the news. I've thought of and prayed for you often during this. Continued prayers for you – for your family.

  20. Many, many prayers for you and your family. I know this is not an easy time, and there is so much emotion to be felt, at different time, and all at once. You are facing an incredible battle, which most cannot even fathom.
    I am praying for God to take this opportunity to show us a miracle, and trying to remember that miracles come in all shapes and sizes, and sometimes we do not recognize them as miracles until later.
    You may not recognize it, but your story is a legacy in the making. You've touched so many lives already, through ministry, your blog and word of mouth. I myself have never met you, but can see how your experiences are reaching others.
    God bless you and your family.

  21. loneliness can decrease “brain reserve capacity” which neuroscientists describe as our brains resilient ability to continue functioning despite deterioration as we age. Brain reserve is considered to be a buffer against diseases and age related changes that can eat away at neurons which are cells in the nervous system and bran that process and transmit information.

  22. loneliness can decrease “brain reserve capacity” which neuroscientists describe as our brains resilient ability to continue functioning despite deterioration as we age. Brain reserve is considered to be a buffer against diseases and age related changes that can eat away at neurons which are cells in the nervous system and bran that process and transmit information.

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