I Will Say Goodbye: A Song for that Devil of a Relationship with Dexamethasone

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BY JENNY AHLSTROM

Right after my myeloma diagnosis, I started a new relationship that put me into a spin. It was nothing like I’ve ever experienced. I would stay up late at night, laying in bed staring at the ceiling until 2 am. I became a neat freak, making five trips a day to the laundry room to obsess about how the laundry was stacked, or randomly throwing away formerly useful items that were now “clutter.” I was indignant for the first time that my house was not at all Fung Shui-friendly and started noticing that my kids were really, really LOUD. ¬†Depending on the day, I would cry without warning or become enraged at someone who took my parking spot in the middle school parking lot. I had it bad.

Losing my sense of humor was my husband’s first clue. This mad-woman was not the girl he married. Was it the stress of the myeloma diagnosis? Was something or someone else on my mind? It took us both months to realize what was happening – and none too soon. Yes, my new bad co-dependent relationship with Dex was throwing us all for a loop.

It was one of those truckbrokedown/husbandleftme/dogjustdied times in my life, which meant that it deserved a song. I wrote this song for the myeloma drug we all love to hate. Hope you enjoy.

 

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About Author

Jenny A

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

25 Comments

  1. Wow!! Jenny!! You are so multitalented!!! You have a beautiful voice!!! And the guitar too!! Wow!! Love this!!! You and Lizzy are a gift to all of us out here in MyelomaVille!! Loooooove all that you have done to create Myeloma Crowd!!! I post your links on my blog all the time and follow several groups on FB!!! Thank you for everything your done for us!!! Julie

  2. Karen Centofanti on

    Hi Jenny, it’s Karen, we met in Boston. You are fantastic, as I told you, and a singer/songwriter to boot! Wow! I loved your song. It expresses exactly how I feel about Dex. BTW I saw Dr. Richardson on Tuesday after the Boston meeting and he couldn’t believe your energy and devotion being a mother of six, a patient, and doing all the good work you’re doing for the Myeloma Crowd. Oh Dear, wait for it, I hate to say it…maybe it’s the Dex helping you out when you need it? LOL

    • Jenny A

      Karen, so nice meeting you in Boston. So glad I’m NOT on Dex right now. It makes me quite psychotic so my lyrics would have been quite different. Ha ha.

  3. Wonderful! How creative and clever!!! You started my day with a smile- thank you. Especially as I’ve been off dex for 10 months but now am adding it to the mix again. You are multi talented!

  4. Susan Benjamin on

    Susan Benjamin: Thank you you Jenny , for this beautiful song (how do I get a copy?. It brightened my day. And my gratitude for all the hard work that you do on behalf of multiple myeloma patients. You are so talented.

    • Jenny A

      Susan, I don’t know if you can download it here or not. I don’t really have it for sale anywhere. If you can’t download it, I can email it to you. Glad you like it!

  5. Wow. Beautiful voice, tune, chords, recording! Nice words. Definitely need to work on saying goodbye to Dex!

  6. ELLIOT BERSHADER on

    DEX is wonderful and often referred as the DEVIL DRUG due to a mean-type mood changer. I think all military personnel should be given DEX prior to engaging in battle (LOL).
    Most patients take 40 mg once per week at ten 4 mg pills. I propose you take two 10 mg pills per day for five days. Take at night before sleep for a restful night. If your take DEX before 6pm you might not have a restful night.
    If any members of this site has an IGA multiple myeloma situation…write me concerning a way to kill your MM CELLS. You may not go into full remission…but you could live another 20 years. ELLIOT VELMOUA@AOL.COM

  7. I remember taking dex 40mg/day, 4 days on, then 4 days off. My red face gave me away but I was easily irritated. Your song & voice are a delightful reminder and inspiring to those on dex today.

  8. Leonid Feygin on

    JENNY AHLSTROM:

    Could you publish lyrics of this wonderful song (my English is not that great) ?

    Thanks.

    • Jenny A

      Don’t be unkind, why be so cruel
      What did I do to deserve to play the fool?
      You lift me up, and then let go
      You’re playing games with me, for all I know
      And I will get by after all that we’ve been through
      The real me is trapped inside until I’m free of you

      And I will say goodbye, when it’s time
      Waiting for the day that you’re not on my mind
      After all is said and done, I know I’ll be just fine
      And I will say goodbye when it’s time

      I’m in a rage, I want to cry
      Must think this crazy pain is worth my while
      I want to go, I always stay
      I’m running round in circles, can’t go on this way

      But I will survive after all you put me through
      Friends wonder why and ask just what I see in you

      And I will say goodbye, when it’s time
      Waiting for the day that you’re not on my mind
      After all is said and done, I know I’ll be just fine
      And I will say goodbye when it’s time

      And I will survive after all you put me through
      The real me is trapped inside until I’m free of you

      And I will say goodbye, when it’s time
      Waiting for the day that you’re not on my mind
      After all is said and done, I know I’ll be just fine
      And I will say goodbye when it’s time

      And I will say goodbye, when it’s time
      Can’t wait for the day that you’re not on my mind
      After all you put me through, I know I’ll be just fine
      And I will say goodbye when it’s time

  9. Susan Mandel on

    Wow!! You are definitely multi-talented and you put into words SO WELL how we all feel about that devil!! You rock, Jenny!!

  10. Bonnie Falbo on

    Jenny-
    I wish I knew you. What an amazing gal you are. You have so many gifts. Thank you for sharing all of them with us……..LOVE your voice.

  11. Jenny you are truly an inspiration to all of us suffering from this godawful disease! Your song and voice are beautiful and needed. I wish there was a place where all of us SUFFERING from MM could communicate with each other and possibly help each other, because at least myself feel SOOOOOO alone in this battle.
    Please keep up the good work, you are making a difference, and just hearing your song and story bring tears to my eyes, because I, and so many others are feeling the same thing. Sometimes our families seem to give up on us, as well as our Dr.’s. It’s makes me so sad that sometimes there doesn’t think that anyone is in our corner.
    Sorry for babbling.
    Thanks again my sister in cancer!

  12. I am new to the MM world, but hearing your song helped me to understand that I was being impacted by the drugs and not just going crazy!
    Thank you

  13. What a lovely song Jenny! Thank you for sharing it with us.
    My husband is currently on the 40 mg 4 day on, 4 day off thing, so really appreciated listening to the song this morning. Humor is key. Lots of Myeloma sitcom material on Dex.
    Thanks

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