Come Again?

It’s been almost a year since I’ve written a blog. And it isn’t because I have not wanted to. I could tell you that it is because I’ve been so busy loving my children and husband. Or that I haven’t had time because I’ve been focused on taking care of my home, my family and myself, or any number of reasons that are absolutely true. But, those reasons have not kept me from writing a blog. Just like the apartment bed I’m sleeping in right now, my blog is a placeholder for the scariest, most painful part of my life, and I had no desire to go back there.

But here I am. Both in this godawful bed with 7 air conditioners buzzing right outside my window and writing a blog at four in the morning because I can’t sleep. In Little Rock, Arkansas. Land of wonderful restaurants, beautiful river trails, quirky little galleries and the University of Arkansas Medical Sciences/Myeloma Institute for Research and Therapy. My home away from home. The birthplace of my darkest moments. But also the birthplace of my only hope for survival.

Most everyone knows that I was diagnosed two days after Christmas, 2012, with a cancer called Multiple Myeloma. I had never heard of it, and why would I? Statistically, I wasn’t supposed to get it. But I did, and I went to Little Rock to find my hero, Dr. Bart Barlogie. He had me in remission before my first stem cell transplant, and after my second transplant I was considered MRD Negative. That stands for Minimal Residual Disesase. So, in the most detailed machine, one that looks at over 4-5 million events (cells) they could see no myeloma. And still, today, I am MRD Negative in complete remission. *Sigh of Relief* Or so you would think. Afterall, I’m writing a blog. So it can’t be all good news, right?

Every four months or so I come back to Little Rock for testing. It’s no big thing, just here a few days, lots of scans, blood tests, see the doctor and go home. This week was my first week to meet my new doctor, Dr. Van Rhee. He does all the trials on the Immunotherapy treatments. Very cool stuff. So I was happy and excited to meet him. Plus, mom and I had some burning questions about my genetic profile, kareotype, etc. These were questions we couldn’t get to Barlogie before he moved out to New York.

So, we were sitting in the little exam room and in walks the cutest, sweetest personality, maybe Sweedish, man and introduces himself as Dr. Fritz Van Rhee. He had the SOFTEST hands. Ank kind eyes. I liked him immidiately. He sits at his computer and pulls up what I recognize as my PET scan. Then flips through my chart and starts quickly going front to back to middle, then looking at the screeen, then flipping some more. Then he lands on one of the pages that mom and I wanted to tald to him about. It’s called a Foundatiuon One Report. It looks for mutations in my disease. He starts reading, looking at my PET, then stops and looks at me. Oh Crap. I realize right then that I’ve gotten much too used to good news. It’s time to tighten those facial muscles and engage my core or I might crumble right then.

“Have you seen your PET?” he says. I say no, that it has not shown up on my MyChart (our online system to review records). I glance over to mom and say, “This is why it wasn’t on there.” Dr. VanRhee is looking at his compurter and rotating my 3D body around and around. “You have a mass here.” he says. “No, that’s a lymphnode that I’ve always had, you can check my reports.” I reply. I can feel a nervous giggle working it’s way up my esophogus. “No, your node is here (he points), this mass here (he points…to a mass I’ve never seen before). And there it is. I can see my 17 months of remission explode into a million beautiful lights and fizzle out on the cold linolium floor.

So now comes the serious talk. I will be taken off protocol immidiately. For those of you that didn’t know, I do maintenance chemotherpay daily. I would have continued to do that for 3 years. That has been stopped and I have been given a regimine of Kyprolis, Monday and Tuesday. Dexamethasome, Monday and Tuesday. Revlamid for 3 weeks on, one week off. A double dose of Kyprolis. I don’t have any friends on that regimine. But I don’t say that. Remember, I’m working really hard to crumble because I know what’s going to be said next.

“We are going to biopsy this mass, Stephanie” Dr. Van Rhee says. “We need to know immidiately if there is myeloma there.” But, I’m confused at this point. “Wait a minute, I don’t have any myeloma cells in my marrow and I’m MRD negative. How can there be myeloma cells in the mass?” I say as I think I know the answer, but am probably in a bit of stupor and denial.

“This happens many times in relapse (not that word not that word not that word). You may have become Nonsecretory. You have no M Spike, no diseased marrow, no protein in your urine. You can grow lesions on their own. That is why we image you so much even though you are in remission. Had you not had the PET, we might not have found this until it was too late.”

I go inside my head at this point, and the rest of the visit is just prescriptions, describing my new chemo side effects, questions about home life and working, to which I replied that my homelife was my work. His response to that was “Good”. I can’t help but think of my nonsecretory friends. Many of them are already gone. Enter the stone face panic. I’ve become really good at keeping that in check until I’m someplace private.

The next dreaded thing to do is call Lee. Everyone who knows me knows how much I absolutely adore my husband. He is my best friend, one of only 4 people on this planet whom I am comfortable enough with to walk around without a hat or scarf when I had no hair, and we took our vows seriously. Every last one of them. Which makes this very difficult to tell him.

It was by far the hardest part of my day.

So here I am, now 5 in the morning, waiting for UAMS to call and tell me they were able to find a spot where they could sqeeze me in. If they cannot do it today, mom and I have to drive home and come back in a few days. Ugh.

After I’ve been biopsied, started my new chemo rutine at home and finished my first cycle of Kyprolis I have to go back to UAMS. I was so hoping they would tell me this time that they are confident in my health, that I’ve done great, and that I don’t havve to come back for 6 months! That is what should have happened. Instead I have to come back in 5 weeks.

So, Friends, I’m sorry I haven’t kept up via my blog. I promise to do better. I’ve met several people that have found the doctors at UAMS through this blog, so I believe there is a purpose other than my own. But please pray for me. Please pray that the core biopsy comes back clean for no myeloma. That I am not a nonsecretor, that I’m still in complete remission and am MRD Negative. Please pray for the strength of my family, too. It shreds my heart to know that we may be getting ready for round two.

“29 He gives strength to the weary and increases the power of the weak. 30 Even youths grow tired and weary, and young men stumble and fall; 31 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.” Isaiah 40:29-31

25 thoughts on “Come Again?

  1. I love you so much Stephanie and you WILL and ARE healed through the Holy Spirit. I am so sorry my sweet friend the fight continues. You are the strongest woman I know and we are all here for you. Peace be with you love.

  2. We spoke briefly in the waiting room at Mercy Oncology OKC about a year and a half ago. I am now in remission from Lymphoma. Just want you to know that I am praying for you. The grace and peace you carried yourself with when we spoke touched me and helped me at the time. So thank you for that and may God bless you and your family.

  3. Stephanie, you are always in my prayers. We love you and may God give you and Lee and the kids. Strength through this. I can imagine the heartache that this is. Love you always, Gwen

  4. No!!!!!! Stephanie, you are strong! You are amazing! You are a superwoman! You are beautiful! You are an inspiration! You have a faith I can only hope to someday have! You are so loved! I hate this for you! But I will pray for you fervently, for your family, for your medical team. You are a fighter and you’ve got this. You have an army behind you fighting with prayer.

  5. Oh, Stephanie. Praying for you. Praying for your strength. Praying for your hope. Praying for Lee and your whole family. Praying no myeloma cells to be found anywhere in your body! Love you.

  6. Praying for you and the family. My heart breaks hearing this news. Jason and I are praying for you and sending positive thoughts your way-this is just a bump in the road!

  7. I am praying for grace, love, and peace in your life. I know you trust in lord with all your heart. He is with you and walking with you along this journey. I met you and your mom in the infusion center at UAMS. (I had the long blonde hair wig.) I am so sorry to hear you are going through this again and feeling that complete kick in the gut. I think you often and was wondering how you were doing. I will continue to keep you in my prayers.

  8. Stephanie, I had a lump in my throat reading this blog entry as I imagined how those moments were for you. I don’t have any words to make this easier for you but please know I pray for you often and I will continue to do so. You have a huge group of prayer warriors on your side. Hugs to you! L&L, -Gina

  9. It’s hard to express what I am feeling. You are always in my prayers and I think of you often. I pray you receive the good news you deserve. You are a fighter and I know you are fighting the good fight. Keep it going and destroy this monster. Love you!

  10. I wish I could wave a wand and make it all go away. I did something better and prayed that God will take care of it. I have great faith in God, You and Lee.

    I can only offer the fact that with God on your side, lee on the other and the fact that your nothing less than……. A BadAss you will see this Heath crap in your rear view mirror.
    Your nothing less than an inspiration to me and my family.
    Be well. We love you

  11. Stephanie,

    You are amazing, strong, and full of faith. I’m praying for you everyday! I pray that you will receive a clean bill of health. Your a fighter and you will win this battle. Love you so much girl!! Keep fighting!

    Love ya, Calvert

  12. As I read this my stomach is in knots. This my fear every single day. I am thinking and praying for you. I know this is your worst nightmare for you and your family. Please let me know if I can ever do anything to make things easier

  13. Hi Steph, I keep you in my daily prayers. I will also pray for the mass to be free of myeloma. I am so sorry you are going through this but I know you will beat this once again. Thanks for updating us, your words are always so moving.
    -Jennifer S.

  14. Stephanie

    I am glad i got to read your blog – this is the first time i have read it and am thankful i did. I will pray for you, your Mom, your husband and your precious children. He is not done with you yet!! Fight the good fight again with that beautiful smile. You will come out even stronger than before. His will not ours – Stay strong. XoXo

  15. Steph,

    You have all the Di Russo’s Praying for you. I spread the word to my kids and they all agreed to keep you in their prayers. Stray strong.

    You’re a child of God.
    Kathy Di Russo

  16. Stephanie, I’m so sorry that you are going through this. It’s a long, grueling journey that you and your family are on. Sending prayers up for all of you. Beautiful post – thank you for sharing with so much honesty. XO

  17. Stephanie,
    I am a follower of your blog and hope you keep posting your thoughts on this site. You are an inspiration to all of us out in Myeloma land. My family has been dealing with this for over 20 yrs, my father had myeloma in 1994, my brother in 2002. My brother was treated by Dr. Tricot at UAMS. I now have smoldering myeloma and am going back in mid-november for my annual BMB and all those other tests….. We must hope for a breakthrough and your contribution to this through the research that is done at MIRT on yourself and others will eventually lead to better treatments for all who have this scrouge. Keep up your positive attitude and know that there many many people out here rooting for you!

  18. God is with you. The blood of Christ made sure that you will be healed.

    Father I thank you that nothing is impossible with you, I pray for healing in Stephanie’s life in the mighty name of Jesus Christ, I declare health right now!

    It is well

  19. Stephanie,
    Hoping all is well with you? I have been keeping an eye on your blog and have seen no recent posts? Hang in there, we are all pulling for you out here in Myeloma land.

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