A Cancer Update: Waiting…

more waiting

It’s been about a month since my last cancer update and yesterday I started to feel a little guilty about not sharing our latest. To be honest, I haven’t known quite what to say or how to say it… Sometimes I wonder how I ended up in a job like this. I’m an introvert at my core and more private than most, often finding it hard to put my life on display. But I am so thankful to have you all in my/our lives. You have been so encouraging to both Ryan and I and it feels wrong not to let you in.

The past few weeks for Ryan and I have been some of the hardest weeks of our lives for no other reason than the excruciating pain of the “unkown”. 

During the first week of November, Ryan had his post-chemo PET scan. PET scans are what show the location and amount of cancer. At the hospital they inject you with radioactive material, have you wait about an hour in a dark room, them scan. This was our 3rd PET scan, so we knew the drill. We received our first PET scan before chemo to form a baseline and show our doctor where the cancer was located and how severe. Our second PET occured half-way through chemo and it showed that the treatment was, in fact, working. The third PET was to show that treatment was successful. 

The day we went in for our last PET we were buzzing with excitement knowing that our journey with cancer was almost over… But the day did not go as planned. From the moment we walked in, everything was off. From the nurse who administered the IV to the PET technicians… It was just, weird. The nurse gave Ryan a bruised vain, the technicians broke out in a verbal argument during the scan, and the overall scan ended in about half the usual time.  To be honest, we walked out feeling unnerved and frazzled. It was not what we were used to and quite clearly the B-team (or D-team) working that day. Regardless, we knew our results would be stellar since our 2nd scan had shown so much progress.

A week later, we sat in our oncologist’s office. We were dripping with excitement to hear about our next steps with radiation when he walked in and said, “guys, I don’t like what I see here…” And our hearts literally dropped. I remember sitting in that exam room when those words came out of his mouth and the feeling of Ryan’s hand gripping mine so tight as the rush of white hot fear hit us both at the same time. My eyes instinctively darted around the room searching for the nearest wastebasket to get sick in, while Ryan tried, unsuccessfully, to steady both of our shaking hands. I will never forget that feeling, which now sits as a visible scar on both of our hearts.

After further conversations and extensive review of our scans, it all pointed to the possibility the cancer that was once diminishing with treatment may now in fact be spreading. Something we didn’t even know was possible after such a great review just 2 months earlier. Everyone was confused and alarmed. PET scans are famous for picking up things that may not in fact be cancer, so after consulting with another specialist our doctor put us on a fast track to finding more information. He ordered a stack of STAT tests to see how fast we could get to the bottom of this abnormal PET scan. Straight from that appointment we were rushed into a CT scans, a surgery consult, and a needle biopsy. Our heads were spinning and we didn’t even have time to process what was happening. 

Just a few days later, after all of our tests came back, we were sitting right back in the same cold seats, in the same exam room, when our sweet doctor walked back in and said “we still don’t have enough information.” I replied, maybe just a touch too loudly in hindsight, “HOW IS THAT POSSIBLE??” The CT scan showed fewer issues than the PET, but still validated most of the more alarming aspects. The biopsy came back “inconclusive”… seriously, HOW. How is that even possible? Ryan had been poked, prodded, and scanned for a week straight and there was still not enough information. Ryan, being the ever so graceful one, said, “okay, so, what’s our next step?”, as I was still trying to pick my jaw up off the floor. 

Our next step was to schedule surgery with the ENT to remove the suspicious lymph nodes from Ryan’s neck since the biopsy was unsuccessful. Our oncologist and ENT tried to get our surgery on the books as soon as possible. They didn’t want us sitting in the unkown for weeks and weeks, but the Thanksgiving holiday threw everything off kilter. It would be virtually impossible to have surgery before the first week of December.

Fast forward to today.  On Monday Ryan will go in for his 3rd surgery in 6 months to have the lymph nodes on the left side of his neck removed for biopsy. Hopefully, we will have answers by the end of next week. Either way, we will move straight into more treatment. If it isn’t cancer (our prayer) we will start radiation to finish up his original treatment plan. If it is cancer, he will be admitted to the hospital to receive a much stronger, more intense form of chemo treatment that requires significant off and on hospitalization. Our doctor has assured us that if it is cancer, he is confident about this next step in treatment. We trust him, but our hearts our weary. 

To have finally made it through such a tough season of chemo and to be told we may be looking at another four and a half even more difficult months is enough to make you hide under the covers and never come out. But even more than that, the unknown is what feels the heaviest and what follows us around all day.

Making plans or dreaming seems impossible and even silly, but that’s when we have to stop ourselves and realize that we were called to live this moment, today, well. That’s it. Tomorrow will worry about itself, we are only in charge of how we respond today.  That’s been our motto these last few weeks. To be exactly where are feet are planted and do this season, a season of waiting, well.

The truth is, whatever is next, God is already making a way, a plan, and His timing, however frustrating it may be, is always, perfect. 

 

The Task of NOT LETTING CANCER STEAL OUR JOY!

I am sure this seems like a heavy update with lots of harsh facts & details, so I’ll just end it with this. We are still so full of hope!  We know that cancer is quite literally trying to steal our joy and we refused to let it.  Our favorite coffee shop is right outside our doctor’s office and we schedule fun “coffee dates” after each appointment.  We’ve decorated our house more for Christmas this year than ever before, and have truly soaked in every second with our families and each other.

So please walk away from this post with a feeling of hope, for you, for us.  Even though we are waiting in the unknown, the hope that we have far outweighs it all. Even though it seems everything has changed, nothing really has. We still love each other, our jobs, and it’s Christmas! We will continue to make the most of every day.

And lastly, for those of you who have so kindly been asking what you can do, the thing that we covet the most are your prayers. We would love nothing more than to have you praying for Ryan’s complete healing along side us and to join us in celebrating each and every day, because it truly is a gift. 

56 Comments

  1. Brittany
    November 28, 2018 / 11:37 am

    Thank you for sharing this incredibly difficult journey with us. My 3.5 year old and I say prayers every night and I will add you both to our list. Sending love and prayers from Kentucky. xoxo

    • Ashley Brooke
      Author
      November 28, 2018 / 3:45 pm

      Thank you so much Brittany, this means the world! xoxo – AB

      • Ivy
        November 29, 2018 / 11:07 am

        Ashley May the Lord hear our prayers and Thank you and Ryan for opening up and sharing with us how to stay positive in the mist of darkness. I will be praying for you and Ryan for complete and total healing!!

  2. November 29, 2018 / 6:44 am

    Oh, Ashley…what a heavy, heavy cross this must be. Praying fervently for total healing. Thank you for opening up and sharing so that internet friends (even if we’ve never met! :)) know how to best lift y’all up to the Lord! xo

  3. Kris
    November 29, 2018 / 7:35 am

    Thinking of you and your husband today and sending prayers….So sorry to hear of this unknown you are both going through. Keep up your joy and strength!

  4. Diane
    November 29, 2018 / 7:46 am

    I believe in the power of prayer. God will never fail you. Let your love for each other and your faith carry you through this wonderful time of year. I am praying for Ryan to be cancer free.
    Xoxoxo Diane

  5. Shari
    November 29, 2018 / 7:55 am

    Ashley…..I am in tears as I read this morning! They are, however, not tears of despair but of awe……of your ability to put this in writing in such an open and honest….and beautiful writing….about a huge chunk of your life that is as painful as it gets. More than that is the strong faith in God that you and Ryan share……so I pledge to pray with you. I am not sure when I have been so touched by a someone that I have never even met…..but then that is the upside of social media….in many ways I have “met” you and Ryan.
    Forward with FAITH and HOPE, Shari

  6. November 29, 2018 / 8:12 am

    Praying for both of you everyday! I’m continually inspired by your strength and positive attitude and am hoping for the best. Sending you love.

    Briana | youngsophisticate.com

  7. Annie
    November 29, 2018 / 8:24 am

    So much empathy and love to you both. Praying over Psalms 16:5-6 for you this morning. It’s given me so much hope in hard times. We are so blessed to have a God who understands our suffering and gives us access to joy in the midst, even when it totally doesn’t feel that way sometimes! Also praying you’d have grace for yourself when you sometimes just need to be angry and sad.

    Lord, you are my portion
    and my cup of blessing;
    you hold my future.
    The boundary lines have fallen for me
    in pleasant places;
    indeed, I have a beautiful inheritance.

  8. Jessa Bray
    November 29, 2018 / 8:56 am

    Praying so hard for both of you. Loving you through the unknown and anticipating the reality of all the dreams you share with each other. Love you guys so much.

  9. Venice
    November 29, 2018 / 9:32 am

    Thank you for sharing such an intimate part of your life and marriage with us. Praying for you both.

  10. Robyn
    November 29, 2018 / 9:33 am

    Sending prayers & well wishes to you both. The hope & optimism in your posts is inspiring.

  11. November 29, 2018 / 10:13 am

    I was filled with anticipation as I read this post. I admit I was fearful. Thank you for being brave and sharing. I can’t imagine how difficult it has been. You bring such joy and positivity to others I want you to know that you are in my prayers. Ryan and you are blessed with each other and family and friends. And total strangers who care.

  12. Carrie
    November 29, 2018 / 10:22 am

    Ashley – I just said a prayer now and will continue to do so. I am so inspired by the Hope you have in the Lord. Brought me to tears this morning. Praying.

  13. Jessica Harrell
    November 29, 2018 / 10:41 am

    Praying for Ryan and you! You are such a beautiful couple – inside and out. Hoping you get quick answers/solutions and treatment plan in place. So glad you aren’t letting it steal your joy – especially during the most joyful season of the year. Keep the faith and remain positive – everything is going to be just fine.

  14. November 29, 2018 / 10:55 am

    Ashley, I know it’s not easy to share something so personal with your readers. I have tears in my eyes but prayers in my heart for you and Ryan to make it through this phase. Your positivity is so inspiring and I know there are readers out there who have gone through similar situations and could use that positivity. Thank you for sharing.

  15. Betsy
    November 29, 2018 / 11:37 am

    Ashley and Ryan, As I read your post this morning I’m thinking of Psalm 23…..find that relaxing,resting place and know that He has you in his hands.Wishing you both a beautiful Christmas and will keep you both in my prayers.Keep your faith and positive thoughts, it will all be OK….

  16. Caitlin
    November 29, 2018 / 12:14 pm

    Ashley,

    I will keep you and Ryan in my prayers. She Reads Truth is currently doing a bible study on gratitude and today’s scripture is on giving thanks in waiting (does it get any harder than that?!). “But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.” (Isaiah 40:31). I will pray for Ryan’s total healing and for strength for both of you as you weather this next hard part. Take comfort knowing that you are being lifted up in prayer by so many.

  17. November 29, 2018 / 12:15 pm

    Thinking of you and sending all the prayers/positive vibes your way. Your positivity is so inspiring, and I truly believe that will come back in the best way possible to you both. xx

  18. Carly
    November 29, 2018 / 1:47 pm

    Sending prayers from Nashville!

  19. November 29, 2018 / 2:12 pm

    Prayers for complete recovery! xo

  20. KW
    November 29, 2018 / 2:34 pm

    My heart aches for you both. What an INCREDIBLY hard road to walk, but you are doing it with so much grace and faith. You both are such an inspiration in every way – as husband and wife, as faithful Christians, and as just the best, most kind-hearted human beings. I am praying daily for your hearts and spirits, and for Ryan’s complete healing.

  21. November 29, 2018 / 2:47 pm

    {{Sigh}} Ashley and Ryan, I am so sorry this is happening to you. Please know I will be praying regularly for both of you. This is a joint project of yours. I believe you WILL beat it, but it’s the in-between time that is both challenging because of the process, but beautiful because of the amount of love and caring you are generating for one another. At this very moment, I pray to our Lord to wrap His loving, caring, peaceful, strong, healing arms and spirit around both of you, and to help pick you up and carry you forward, one day at a time, until and after you are completely healed. So much love and huge hugs to both of you… Nancy

  22. November 29, 2018 / 4:07 pm

    Ashley, you and Ryan are such beautiful souls to share this with everyone! I can’t imagine the feelings you are both going through right now, but I truly believe in the power of prayer. I will absolutely be sending all the prayers and positive vibes your way (virtually and IRL ♥️)!

  23. Paula
    November 29, 2018 / 4:13 pm

    Both of you are in my thoughts…
    Please keep Isa 41:13 in mind, it always brings me comfort.

    I know you have probably heard every remedy or suggestion. I would like to mention Essiac Tea. It has helped people I personally know. Check out Herbal Healers.com for info & testimonials. Also my sister used Emu Oil during radiation, she applied it before & after each session. She didn’t blister at all.

    paula

  24. Denise DiBelardino
    November 29, 2018 / 4:48 pm

    I am praying for you, Ryan, Dolly, and all your families! Virginia prayer base covered

  25. Chris Thomas
    November 29, 2018 / 7:18 pm

    Sending prayers and lots of hugs❤️

  26. Christine
    November 29, 2018 / 7:23 pm

    Oh Ashley, I cannot imagine the emotional roller coaster for you and Ryan. Your candor about this journey has been so incredible. Sending you lots of prayers, warmth, and love as you walk into the unknown with Ryan’s upcoming surgery. Take care!

  27. Janie
    November 29, 2018 / 7:38 pm

    Ashley, that sick feeling in the pit of our stomach and a heart that feels as if it could explode from hurt, pain and disbelief. That cry…God…WHY??? This is so understandable and God hears, sees and knows your hurt, pain and fears. I know from your posts that you have great faith and how wonderful to be able to call out to HIM. HE IS with you and Ryan and all of your family. I have been blessed by you and your posts. As we enter this season of Advent, it is my prayer that each of you find some peace and comfort in knowing that HE has come and WILL come again. Tonight, know that I am praying and holding you both near and dear to my heart. Hugs and Prayers Janie

  28. Evelyn
    November 29, 2018 / 8:16 pm

    Sending love and prayers yalls way ♥️♥️♥️

  29. November 29, 2018 / 8:22 pm

    There is power n prayer and you are in mine.

  30. Nadia
    November 29, 2018 / 10:40 pm

    I’m a reader who’s never commented (not because I don’t love what you share in all your posts) but I want to add to the many and say I’m so amazed by how you, and encouraged to do so more in my own life, trust the Lord. Your vulnerability makes me feel teary-eyed and your hope and faith is clear and so sweetly genuine. Thank you for sharing. May the felt-presence of the Lord be so near you, wrapping and holding and enveloping you this season. Will be praying!

  31. Abbey L.
    November 29, 2018 / 11:30 pm

    After reading all of the comments of these sweet strangers and friends above me, I can’t help but think how funny it is—how this world strangely connects people in the simplest of ways. I’ve been following your blog for a while now after happening upon it on Instagram, and I want you to know that you and your husband Ryan are covered in prayer! Even though we are strangers, I feel like I know you guys because of your stories I see each day. My brother-in-law is a pastor and to this day, after all of the sermons I’ve heard him preach, the words that seem to always make their way back to me are these—“The worst thing is never the last thing.” Thank you for having the courage to share your story and the courage to choose JOY. Take comfort in these words and know Birmingham, AL is thinking of you. 🙂

    -Abbey, Birmingham, AL

    • Janie
      December 1, 2018 / 9:12 pm

      Abbey, your post touched me. Yes…we are all connected..one with the other and love and kindness helps us to move forward in life when it may seem just too hard. it is then we are reminded that there truly is something much greater ahead. Christmas Blessings to you and yours! Janie

  32. Erin
    November 29, 2018 / 11:34 pm

    Sending positive vibes & prayers your way! Your positive outlook on life is contagious and Ryan is lucky to have a cheerleader like you in his corner. Thank you for sharing even the incredibly difficult times with us!

  33. Grace Evans
    November 29, 2018 / 11:35 pm

    Ashley, you and Ryan are both in my prayers, hugs dear friend!

  34. Ashley
    November 30, 2018 / 12:09 am

    I admire your strength and light in this unimaginable situation. Sending prayers and positive thoughts to you and your husband.

  35. MaryAnn
    November 30, 2018 / 1:22 am

    Oh Ashley & Ryan, I am so hopeful the Pet scan was wrong! Cancer is such an unfair, long, winding road, full of pot holes & not enough smooth patches! My dad had to have his neck lymph nodes removed during his oral cancer surgery because they were showing suspicions on the pet scan, but they returned normal, during the long surgery (8 hours).
    I am praying everything will turn out great and Ryan won’t need the extensive chemo!
    We’re still on our cancer road, nearly 3 years later, and over 20 trips to the doctor that is a 10 hour drive, and it definitely gets to the point where you think “will this ever end”, but you just soldier on to get to the smooth road of life again! Wishing you both the strength and courage I know you’re already filled with! Much love and many prayers to you both!

  36. Susan Erlenbach
    November 30, 2018 / 1:29 am

    My darling girl; I am so very sorry for all that you and your husband are enduring. Many prayers & much love to you both!

  37. Reese
    November 30, 2018 / 2:59 am

    You are in my prayers. As you both walk towards Ryan’s restored health, I pray you’ll both have what you need when you need it. Whether it’s caring and innovate physicians, coffee dates, friends who make you laugh and friends who steady you with their strength. You have each other and an abundance of good will, hope and positivity flowing towards you both.

  38. Cathy Lovelace
    November 30, 2018 / 6:21 am

    Ashley and Ryan…you don’t know me, but I’ve known and loved Ryan’s parents since we met in my late teens and I’m now 61…
    As Joy shares your updates I’ve read them, wept with you, hurt with you, and yes I’ve walked a similar path with the godly man God has in my life these last two years. He had cancer of the tongue and went thru chemo and radiation. He also has a non Hodgkin’s lymphoma they are monitoring right now as well. His name is Mark.
    Long story short, we totally understand and my heart is with you. We pray for you regularly and will continue that God will bring complete healing and give grace and peace during these difficult days you are walking. So many times, Mark has said God has assured him He’s got this and him and to trust. Trust in the great physician and healer.
    So, I wanted to encourage you and thank you for sharing. Prayers will continue.

  39. November 30, 2018 / 6:26 am

    Glorious God, we thank you for Ashley and Ryan and all their gifts and the joy and inspiration they bring to the world. We pray they feel your love and comfort every step of the way. Thank you for giving them such courageous spirits that they are able to enjoy life even through hardship. We ask with all our hearts that this season comes to an end and Ryan is gifted perfect health. These bodies you’ve given us are amazing healing machines and we pray to see Ryan’s miracle. In Jesus’ name we pray. Amen.

  40. Jennifer
    November 30, 2018 / 7:11 am

    All my best to you guys. I am not typically one to comment on blogs, but came across yours a couple of weeks ago. I had stage iv lymphomas in 2016-2017 and it had spread to my brain. Lots and lots of chemo both in hospital and outpatient and it was really the most awful time, but I’m in remission now and am sure you will soon be too! Keep your head up and don’t let the big C win.

  41. Theresa
    November 30, 2018 / 7:26 am

    Praying for Ryan and you Ashley. Thanks for sharing your story. The hope you have is an inspiration. We serve a mighty God and it is my prayer that Ryan receives complete healing. Thanks for reminding us that every day, every moment is to be treasure. May God bless you and comfort you during this difficult road you are now traveling.

  42. Kaylanwedekind
    November 30, 2018 / 8:01 am

    This was so hard to read. Thinking and praying for you, your husband, and families.

    Have you talked to your doctor about next generation sequencing and try precision medicine?

  43. Melissa
    November 30, 2018 / 8:44 am

    Oh dear Ashley and Ryan. Praying every day for you both. I really do love you even though we have never met. I wish I could take all of this away from you. What I know I can do is pray like crazy. ❤

    xoxo,
    Melissa

  44. Patricia Haddad
    November 30, 2018 / 9:28 am

    I am torn between feeling awful for you and Ryan and feeling inspired! I’ll pick inspired. You two keep plowing ahead and don’t let anyone stop you. You’ve got this! With all the prayers coming your way (including mine), you can do this, together!!!! You are in my thoughts and prayers.

  45. Karin
    November 30, 2018 / 9:41 am

    Ashley and Ryan my heart is heavy for you both but also Joy is there in Knowing your trusting and asking Our Father, for that’s what Jesus told us to do. I will be joining with you daily I’m so sorry to confess I had misunderstood and thought it was done and had stopped praying.
    Sister and Brother I praise God for how your pressing on.
    With my prayers and my love
    Karin

  46. December 2, 2018 / 12:54 pm

    Thank you for the update! Sending many prayers to you both. I really admire your determination to find the joy throughout your journey. Many prayers for success and continuous joy!

  47. Allie
    December 2, 2018 / 7:57 pm

    Ashley,

    I remember sending you a DM from the waiting room when my grandfather was in the hospital & was diagnosed with cancer. I carried my ABD Best Day Ever water bottle with me every where I went in the hospital & to every radiation session I went to. It was & still is a constant reminder that no matter what is happening, today can still be the best day ever. I will pray for you & Ryan today & everyday!

  48. Melissa
    December 2, 2018 / 8:33 pm

    Aending

    Sending prayers your way!! I am hopeful everything will turn out well in the end. One of my best friends battled the same type of cancer Ryan has (se was 26!) and is now completely healthy. I was with her when she got her med port removed after the doctors confirmed she woulnd’t need any more treatment, and it was such a happy day! I pray that same day will
    Come soon for you and your husband.

  49. Michelle
    December 2, 2018 / 9:09 pm

    Sending up big prayers for you and your husband! Prayers for hope, joy and lots of grace! I know in my heart that he will recover from this cancer and that he’ll be even stronger after!

  50. Susan
    December 3, 2018 / 12:57 am

    Ashley, reading your post made me want to cry.. and at the same time made me feel so in awe of you and Ryan. I’ve had cancer and can somewhat relate, especially the testing, the waiting, the ups & downs and trying to maintain a normal life. Just know there are so many of us praying and sending good thoughts your way. God bless you both; keep the faith that Ryan will be healed.. getting over these bumps in the road isn’t easy.. but trust you’ll get there… you got this. So glad you both made the choice to be joyful and keep the spirit & true meaning of Christmas in your hearts. God Speed. Hugs xoxo

  51. Heather
    December 3, 2018 / 2:28 am

    Sending you both strength and courage. Thank you for sharing. Lots of positive light and love + abundant prayers.

  52. December 3, 2018 / 7:06 am

    My mother is dealing with pancreatic cancer and we just lost my grandfather, not gonna lie- it’s rough! we are headed to Houston this am for a pain blocker procedure. I wake up praying and go to bed praying- all that is getting me through. I am so sorry! I will add you all to my prayers! one foot in front of the other!

  53. Emily
    December 4, 2018 / 12:24 pm

    I went through Chemo for Hodgkins 2 years ago. When I was first trying to get diagnosed they tried a needle biopsy, but i ended up needing an excisional biopsy as well as the results from the needle test didn’t show anything.

    I ended up being treated with a chemo regime called BEACOPP it is more common in the EU and was tough.

    I hope that the most difficult part of your family’s journey with cancer is almost offer.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.