Beating the Monster…Again

It’s been a whole year since I updated my blog. So much has happened since then. Some good, some not so good. I had the amazing opportunity to speak at a myeloma conference at UAMS, with Dr. Van Rhee, Dr. Morgan and Dr. Davies, as well as several other amazing myeloma advocates. That was awesome. I felt like I could use all of the knowledge I’ve gained, all of the heartache and pain, to be a force for good. I hope I reached some of the younger myeloma patients out there. Lord knows we need that support!

Since then, actually since about February of this year, it seems as if I’ve been in constant flux. I never seem to know if I’m coming or going, if my myeloma is behaving or not, if my immune system will or won’t work this week, etc.  Oh, did I forget to mention that I’m no longer in remission?  That was a hard one to swallow.

After several checkups with Dr. Van Rhee where we carefully watched what was happening in my body, we got the news that I never wanted to hear. Not only had the Myeloma in my marrow come back, but my monster, the plasmacytoma in my chest is active and growing. On top of that, my myeloma has become nonsecratory and refractory to most of the chemotherapies I’ve been on thus far. That means that it’s SMART. It has mutated and ‘learned’ the drugs given to me to fight it. It no longer produces the protein found in blood and urine that makes it easier to track. It truly, truly is my monster.

For the past 3 months I’ve been on a chemotherapy regimine of cytoxan and Pomalist, along with all the other magic pills I take. I wish I could say it’s been fun… Cytoxan is a BEAST. Our goal is to reduce my myeloma numbers as much as possible to prepare for a third transplant in January. Yes, a THIRD transplant. Heaven help me!  Lol….

I return to Little Rock the first week of January. Mom and I will live there for about a month, maybe a little longer. Unfortunately, we weren’t able to secure the amazing charity apartment through Open Arms, so finding an apartment or house near to the hospital, and safe for how fragile I will be has been somewhat difficult. God will provide, though. This I have no doubt. He has given me so much through this period of my life, it’s hard for me to stay dissapointed for too long.

I know so many people still pray for me, and for that I am eternally grateful. Please continue to do so!  I’m in a different position than I was in the beginning, in 2013. Because my myeloma has mutated, gotten smarter, things may be a little more difficult. I’m going to try to keep up with this blog, to let people know how I’m doing, how my family at home is doing. Speaking of, this is going to be difficult for my babies. If you see them, give them a smile. It’s hard to have a mom so far away when they know it’s because I’m sick.

One last thing. As we get closer to the holidays, please remember to pray for all of the families affected by cancer. It seems that there are more and more every day. Being a support group leader, I see new faces all the time, but it’s not just those faces. It’s children of friends, husbands of friends, parents of friends. And it’s cancer that we may have never heard of before. Hold your loved ones close, and if you haven’t been affected by these destroyers, praise God, and pray for those of us that have.

‘Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.’  Galatians 6:9

26 thoughts on “Beating the Monster…Again

  1. Praying for you and your babies. Thank you for the update. Will continue to pray. “fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.”
    ‭‭Isaiah‬ ‭41:10‬ ‭

  2. Newby…I am so sorry you have to continue to struggle with this monster. You are always in my prayers. I pray for the family also. Love to you all.

  3. Precious daughter…your faith and love of God is so inspiring. Your love in being a wife and mother makes my heart swell with pride. Knowing how hard you fight for Lee, Harper & Gunnar to “appear” okay is remarkable. As hard as it is I am grateful to be by your side during these most difficult of times.Your efforts to remain positive show through your beautiful smile. I love you with all my heart….Mom

    “I have not stopped giving thanks for you, remembering you in my prayers.”
    Ephesians 1:16-17

  4. Steph there are so many things I want to tell you I don’t know where to begin just know we love you very much and keep you in our prayers. My mom use to tell me to say this prayer when I’m in need sacrado corazón de Jesús en vos confío which is sacred heart of Jesus in you I trust. I hope this prayer will give you comfort. We keep Lee, Harper and Gunnar in our thoughts and prayers. 💕

  5. Hi,
    I started following your blog when I was diagnosed in March, 2015. I am treated by Dr. Wolf at UCSF. I am leaving San Francisco as I am typing this reply. Maybe you have looked into this already but UCSF is currently enrolling patients in CAR-T cell trails. I immediately thought of you as Dr. Wilf was excitedly explaining the trail to me. I am almost 2 and 1/2 years out from a single auto and am now MRD positive. Going to start Dara/ Rev/Dex. I am Revlimid naive as I was in renal failure when first diagnosed so I had Cytoxan/Velcade/Dex. My prayers are with you. I am 54 years old, married, mother to two beautiful girls.

    • Thank you for following my blog, Letty! CAR T is my long term goal. Unfortunately, at this time it’s not ‘in my toolbox’, as my specialists at UAMS love to say. I’m a bit of a complicated case 😐. I actually relapsed on Dara/Pom/Dex, But I know so many other people who are doing so well! Good luck to you, and please keep in touch!

  6. My dear Steph,
    Your faith and courage are admirable. Our prayers have been for you and the whole Holmberg family since the first time we heard about you. May the Lord continue giving you the strengh you need to fight this monster.
    Love and prayers, John and Ceci Kane

    • Yes! How are you, Jim? We secured a Home Away from Home apartment the other day. It’s just difficult going from a completely paid for apartment to one that is not. I trust that God will provide physically, mentally and financially. I’ll get this done just like the other two! Please keep in touch!

      • Stephanie – We are about to return to Denver after my first consolidation round. We’ll return Jan. 21 for second consolidation. Marsha and I want to help you with your Home Away apartment costs. Would that be alright if we gave to Little Rock Church on your behalf (they have a way for us to do that)? I assume you and Kim Burket have already arrived at a fee for your stay here? When do you plan to arrive and how long do you expect to stay?

      • Thank you guys so much! I cannot adequately express how grateful I am to you both. As much as I despise the fact that all of us, and our families, have to be on this Myeloma journey, I am constantly blown away by the goodness in people like you and Marsha! Yes, we are working with Kim. We will arrive on the 7th, but have to start paying in a little over a week to insure we get the apartment. I’m not sure exactly how long I will be there, a minimum of 3 weeks, possibly up to 5 weeks. Any donation would help so much! Thank you!

  7. Prays for you and your family. God will give you the strength to get through this. I hate mm. I have been in remission since 2014. I will keep you in my prayers.

  8. I’m glad we can help out. When I’m in treatment I often don’t feel like eating solid food. We have almost a full tub of a plant-based nutritional shake powder called Vega One (coconut almond flavor). Would you use it if we left that behind for you at HAFH? I can’t seem to attach a photo.

  9. Stephanie I read your blog. I have two friends in Little Rock. The message I just sent was from Gay Jennings. Her church has a furnished home by med center for just these kinds of needs. Hope it helps.

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