Something’s gotta give…..

Good evening. I might as well write this, and get it over with. I’m exhausted and overwhelmed. It’s been an extremely long 5 years of battling this disease. Fatigue, stress, anxiety and nerves sure do compound over time. How many times does one have to be knocked down? Can I not just enjoy my life that I love? 5 years….and going. Something has to give eventually, right?

We’ve been through a lot, and unfortunately we aren’t any closer to being out of the woods. Dr. Rapson (my local oncologist here in Lansing) called me from the hospital. I asked her to call me when she found any news, and she did. First, there is no official report, but she decided to go and sit with the radiologist to view the MRI.

The spot I had radiosurgery on (Gamma Knife) is still there. This could mean many different things, especially since she couldn’t tell me exactly how it contrasted in the imaging – different contrasts mean different things – blood old and new, scar tissue, etc. It isn’t larger so that is a great thing.

The most troubling thing and one that is the most devastating is that there is a new spot near the previous one. Without an official report, I cannot get a true understanding of its description. Dr. Rapson said it is very small and indiscriminate, but worrisome. She seemed reserved about it, but said I should see my neurosurgeon soon.

This finding has many implications. First, it means the original spot most likely without a doubt is/was angiosarcoma. There was a glimmer of hope it was a more benign cavernoma, but this is proving to be false. It would have made a world of difference. Second, disease in the brain takes almost all clinical trials off of the table as well as many standard therapies due to the seemingly impenetrable blood-brain barrier. It leaves us with very few options if we cannot get stable or no disease from here on out. It’s very scary, and I am so very tired of all of this.

I was so very excited to go camping this Wednesday. This is crushing me. We still have a lot to figure out, but we are heartbroken right now. It just feels like I am dying slowly, and this disease is toying with me. You might think “slowly” is a good thing in order to get quality time in, but it is excruciating to continue to go through these gut-wrenching decisions on my life, time and time again; to continue to visualize my wife without me; to look at my sons and their innocence, only to dread what may be coming for them losing their father; to watch them play, laugh, learn, cry, and just want to be with me, knowing their worlds could shatter. It’s horrendous.

I play “death videos” in my head on what I want to say, what lessons I want to teach that I won’t be there for, what life memories will be made without me being around, how it is okay to go on with life without me…..this happens to us all going through this – we just never, ever want to have to do them. It is the most awful pain to force yourself to go through, but in order to get it done, I would rather do it sooner rather than later. However, in my mind, doing them admits that the end is death, sooner than later. It’s a whirlwind of emotions. So, yes, this delayed suffering is amazing to spend time with my family that God has given me, but this is the 5th time my mind and body have to go through this, and it’s not even a physical pain.

I am exhausted.

What now? We do what we have to in order to survive. At this point, I am not even sure what that means. I don’t have the final report yet, but it doesn’t sound promising as far as any chance at a good report. I’m also waiting to hear back from a few people in my life who are reviewing the images as well. I have had an appointment scheduled this Wednesday for a while with my neurosurgeon at MD Anderson, Dr. Lang. I kept that appointment for this very reason. I also overnighted my scan images to MD Anderson before knowing the results for the very same reason. Instead of camping Wednesday to Sunday (on a trip we have been looking forward to for so very long), I will be traveling to Houston for my decisions on my health, life and future. I am truly and utterly destroyed right now, and there isn’t much life can do. I’ll pick myself up as I have in the past. Adversity and despair are not strangers to my life, but neither are miracles, hope and courage. We will get through this.

As for silver linings and blessings, God has granted us some as always. It’s not wide spread. It’s very small. The other spot didn’t grow. I kept my appointment with my neurosurgeon still. The ducks are all in a row to get a plan going quickly. I am still alive and well, and physically able to do just as much as I have before. Hopefully, I should make it back home by Thursday or Friday to spend some time camping with my family still. We will get through this.

Please pray. Pray for guidance. Pray for control of this disease. Pray for an answer and a plan. Pray for safe travels and peace of mind. And pray for my family’s safety as they go camping without me. Please pray for an unremarkable PET scan in less then a month (beginning of July).

For now, we just need some time alone as a family of four. Thank you for continuing to love us all unconditionally. We have yet another battle to forge in this never-ending war.

We love you.

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32 Responses to Something’s gotta give…..

  1. Kathy Schlaud says:

    Praying!

  2. Leann Kirkendall says:

    We received your letter. Of course, it is not what we were hoping to hear, but we do
    admire your bravery and truthfulness in bringing the news and letting us know how
    you feel about your present situation. Thank you for being you and for always being
    able to tell us what you know.
    We will keep on praying for you and Andi and your lovely family. May God give you
    traveling mercies as you go back to Texas once again.
    We love you,
    Leann

  3. Leann Sherman says:

    Hi, Ryan.

    I’m a friend of Corrie Perlroth Painter. Stick with her; she knows a lot and is very well connected – and a great friend. Thinking of you and praying for you down here in Rockville, MD.

  4. Leann Sherman says:

    Wow- just noticed that you have a friend named Leann who spells her name just like I do! Hi, Leann. I see that we are both sending Ryan good thoughts.

  5. Marra Chinn Allen says:

    Please keep your courage and find strength in God–and in your family. My thoughts are with you…I pray you a calm mind, determined heart and resilient body to rebound from this.

  6. Briones family says:

    Dear Ryan,
    You’re always in our prayers. BIG HUGS!! <3
    The LORD is my light and my salvation — whom shall I fear? The LORD is the stronghold of my life — of whom shall I be afraid? — Psalm 27:1
    Dear God we ask that you be with Ryan and his family, who need your palpable presence as they fight their battles. In Jesus' name we pray. Amen.

  7. Susan says:

    I am a friend of a friend. I wIll pray for you and your family. I have been praying for answers and relief for people with AS since becoming aware of it. I will pray for continued strength for you in your battle.

  8. James Dean says:

    Ryan, thank you for the update tonight. As hard as it was, you did a fantastic job saying what was on your mind. This gives the whole team the picture at the present, and can continue to Pray for those things that you have ask us to do. God will continue to watch over and touch you and your family. Stay strong, and I know that is not the easy thing to do at this time. God Bless.

  9. Jon towers says:

    I’m amazed by how strong you are. You should know that it gives others hope 🙂 🙂

  10. Christine says:

    Thanks for sharing. You are in our thoughts and prayers. Try to continue to trust in Jesus and enjoy your family time.

  11. Judy Kozel says:

    Hi Ryan,
    All I have to say is CRAP!! I’m sorry for the news you received and I so admire your optimism. I also understand you’re tiredness. This has been such a battle for you and your family. As you head to Houston, I will pray for you as I have been. I am a friend of your cousin, Marilyn Z. I feel like kicking the dog right now but I won’t. Have a safe trip and know that so many are thinking of you!!

  12. Katie willerick says:

    Oh Ryan, I am so very sorry and will definitely continue the prayers. Don’t give up! We love you!

  13. Regan George says:

    Praying Ryan. Stay strong. Thanks for being so open to allow us to follow your journey.

  14. Judy & Bruce says:

    God be with you as you continue on this journey… Only he knows why this is happening. His will be done. He will take care of you.
    Love to you all.

  15. Donetta Malloy says:

    I don’t know you, but have been praying for you for years. I’m also heartbroken along with you. I know you are exhausted. But Jesus called us through the narrow gate. So even if the wide gate (the worlds way) would be to give up, I will continue to pray & believe for complete healing. Try to rest in the peace that others are carrying the burden in prayer. Much love to you & your family.

  16. Rachel Peters says:

    I’m so sorry. I can’t even imagine how difficult this must be on all of you, dread just hanging over your head all the time. I will continue to pray, you and your wife are two of the strongest people I’ve ever known. Keep the faith.

  17. Ruthe (a friend of Jennifer Brubaker) says:

    Hi Ryan, I am a friend of Jennifer Brubaker…I have never met you however have followed your posts. My heart goes out to you and your beautiful family..Your strength I’d an inspiration to all. I have three children and you and y Po u r family are in our prayers!
    Ruthe

  18. Dan Duffy says:

    I heard a little about your journey from your father who I recently met and wanted to let you know there is another brother in Christ praying for you and your family. I won’t get into details about my story and my wives accident but wanted to share some insight it has given me. The greatest gift was the one I gave myself in giving up the search for answers or reasons and trusting in Him completely to whatever tomorrow brings. To know that He had the answers, reasons and ability to bring light to all my darkest thoughts and worry was enough. To than use my voice to give Him glory and praise through pain and suffering has a power like no other testament I’ve ever known. I’m sure I became a better husband when I realized every morning she was still here was also the same day many others in this world would wake in grief. You have the opportunity to make every day mean more to those around you than what many fail to see clearly in a life time. I pray that you have all the time you need in this world to feel you gave all you could. All of us travel different roads in our journey back home so please don’t take my words to mean I know everything about yours.
    God bless

  19. Sandhya says:

    Sure Ryan; God is our only Hope and HE is very compassionate.
    U r v brave 🙂

  20. Jennifer Lee Edgar says:

    Ryan I have everyone I know praying for you!

  21. Briana Kunisch says:

    I am so sorry that you are missing the camping trip with your family. That alone is very disappointing. I wish there was better news for you. I think of you guys often and will continue saying prayers for your family.

  22. sandy maclean says:

    I hear fatigue and fear in your voice Ryan. I want you to know that all of us who have been with you through this challenge will NEVER let you down. We will pray more and send more positive energy your way than in the past, and we will challenge your fear and fatigue. Get up Ryan !!!!!!!! It’s not over yet. Look in the eyes of your wife and boys and remember the reason you WILL fire up your engines once again. Sending you a warm caring hug !!!!!!!!!

  23. Patrice King Rener says:

    Dearest Ryan…my heart is heavy for you and your family. I just finished reading your blog. I sit here with so many emotions and thoughts running around in my head that I would want to say to you… but in all honesty… I cannot even put into words the feelings I am experiencing for YOU especially and then all of your loved ones. I believe in my heart that you have endured far more than any human being should have to endure in this life. My faith is strong in that I am holding God in charge of this since it is far too enormous for any of us to handle alone…. and God only knows… he IS helping you each and every single day… he has to be. I wish I had the words to comfort you….. and to say just the right thing to HELP but in all reality… I know I cannot possibly have the “right words” for you… but I can offer you my pure love and compassion for you and your entire family. I will continue to pray for all of you and keep you very close to my heart as you continue this journey that is just so hard to comprehend. You are most definitely NOT alone Ryan… not now, not ever. You have so many willing to help hold you up… please let us all do just that…. Hold you in any way, shape or form possible to show our pure love for you. If at a distance… know this love is pure for you. I wish I had the words….. God, how I wish I did. 🙁 All my love and compassion to you Ryan. I continue to pray…and pray… and pray. (((tight hug)))

  24. Dawn Byers says:

    Prayers for you and your family. I have no great words of wisdom, only that you are thought of daily by many around you. Sending positive thoughts and energy your way.

  25. Kim Robinson says:

    I will continue to keep you in my prayers as well as your family! I am friends of the Slot family and have been following your story! Peace and hugs to you!

  26. Rick Sims says:

    Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will stengthen you and help you. I will hold you up with my victorious right hand.

    Isaiah 41:10

  27. Cyndy Gusler says:

    We are friends of the Slots. Houston is praying for you!! ❤️

  28. Liz says:

    Philippians 4:13
    I can do all things through Christ which strengtheneth me.

    Ryan you have been such an inspiration for me, keep looking up.

    <3 God Bless You <3

  29. Tinka Bloedow says:

    Terrible. And more terrible. But while our strength runs out, God’s strength is forever. I know. I have been in the dark, bottomless pits of despair. And God was there. Is there. And will be there.

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