A Tribute to My Dear Myeloma Friend, Advocate and Warrior, Lizzy Smith

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Today I say a heart wrenching goodbye to my dear myeloma friend, Lizzy Smith who passed away yesterday.  Her passing is a great loss to me personally and to her fellow myeloma survivors. She would want an airplane to fly a banner over the sky to read that she did NOT die from the severe pneumonia that she battled over the last week, but of multiple myeloma – a disease that would not stay away, even with the most intense treatments.

Liz was diagnosed at the young age of 44. She was a 5 day-a-week runner, took vitamins and ate mostly organic fruits and veggies, so her diagnosis was a complete shock. Immediately after she was diagnosed, she left an abusive marriage, and with her two daughters moved to Utah to undergo tandem transplants under the loving care of her parents. She was convinced that she was the only female with multiple myeloma living in Utah until I saw a Tweet of her hiking a local mountain. I reached out to her and we met up at a local restaurant. She was a force of nature to be reckoned with and immediately jumped into helping me launch the Myeloma Crowd website, meeting with me weekly as we brainstormed about designs and ideas and that would be helpful to other patients. She wrote over 430 articles on the site since the beginning of 2014, contributing valuable knowledge for others living with 635555632303257986lizthis disease. Her energy and enthusiasm were more than contagious, they were awe-inspiring.

Liz did not want to be known not as a myeloma patient (too passive) or a myeloma survivor (she was never just “hanging on”). She wanted to be a myeloma warrior, fighting against a disease that could dish out punishing blows.

Liz was a whirling force of nature. Between her tandem transplants, just months apart, she didn’t rest. While the rest of us were staying home, fearful of public germs, she took a vacation to Washington DC on Amtrak. Before her third transplant, she went skydiving to prove that she could still live an exciting life in spite of having myeloma. She was a gifted writer who had a way with words and a clear voice. She was positive, uncomplaining and unapologetic.

She never, ever spent time feeling sorry for herself. She made decisions in advance about how she would not just endure life with myeloma. Her motto was to LIVE and she made a case for living life to its upmost.

And that’s why I’ve learned to live. Live BIG and GRAND as often as I can. As often as my health and treatments allow, and responsibilities to children, self, family and loved ones. I travel like crazy and have discovered locales that bring me great joy. I go hang gliding. I ski. I do things that are outside of my comfort zone. When I feel angry, sad and depressed, I hit up the salon, go for a walk, or play with my friend Katherine’s dog. Anything to get out of that zone and into a different one. I plan to go skydiving soon. Wear your favorite shoes, use your pricey perfume and favorite dishes daily, and break out the handbag you paid way too much for and have been hesitant to use in case you ruin it. Who cares? It’s doing no good in the closet. Go hang out with your friends and laugh. Pity parties are allowed, but letting them go for too long accomplishes absolutely nothing and can be extremely dangerous to our fight to get well, recover, and gain our emotional, spiritual and physical health back.

liz-and-family-2She was passionate and protective of her family, especially her daughters Morgan and Sienna. She was in head over heels in love with her new husband Bill, to whom she has been married for a year. She had great love for her parents, Keith and Jackie, and were so grateful for their love and support during her transplants and care for years after. Her family was her center and she adored them with her whole heart.

Her myeloma friends feel the loss deeply. Gary Petersen writes:

Lizzy Smith Conley is gone!  I truly hate myeloma which has taken Lizzy, another of the handful of dedicated, selfless, and dynamic myeloma advocates.  It is hard for me to believe in a little over one year we have lost three outstanding myeloma advocates, Lizzy Smith Conley, Pat Killingsworth, and Mike Katz.  With Jenny Ahlstrom, Lizzy helped to establish the Myeloma Crowd and was a tireless author of many of the excellent articles written for the Myeloma Crowd website.  Most of all she refused to let this disease break her spirit, she remarried, loved life and tried to live every day to its fullest.  She was my friend, I admired her, and was shocked and saddened when I heard she relapsed, but had hoped, prayed, and believed she would find a way to beat this relapse.  Today is a very sad day, and I hope she, Mike, and Pat are together, and advocating for us from on high!  My sympathies to Bill, her daughters, and her entire family.

Liz, you leave a gaping hole in the world of myeloma and for your friends and your family. You shaped the Myeloma Crowd into what it is today with your energy, creativity and dedication and your voice will be sorely missed. Our thoughts and prayers will continue with Bill and your family.

With all our love, your fellow myeloma warriors.

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About Author

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.

28 Comments

  1. Stephanie Holmberg on

    I am at a loss. Liz was someone I truly looked up to, and someone I thought of often. I enjoyed our talks on Costa Rica and ideas for Myeloma Crowd articles. I absolutely hate this disease.

  2. I am so sorry for your loss, her family’s loss, and the loss for the MM “community”. My mom was 80 when diagnosed, and she always said she was going to beat it. Too old for transplants, too fragile for aggressive chemo…tablets, then velcade injections. Her last biopsy reported..”suspicion of MM” !!!. That was in 2014. Due to her age, good and bad cells grew back slowly. Her body gave in on may 25, 2015..a few days after she said rhete was so much she still wanted to do. That was her spirit…to fight. With the help of her wonderful oncology team, they gave me almost 9 more years with her after diagnosis. From stories ive read, she had it easier than most..as many times she fell due to other health issues..never broke a single bone miraculously. She’s been among the angels for over a year, and i know she’s still fighting..but to guide the rest. I know her story is different due to her age, but feel free to reach out to me. Her younger sister is now fighting it, theres suspect that another sister may also have it so its close to my heart, and i worry about hereditary issues, trying to spread the word regarding research funding, etc. God bless you all. We will find a cure, as mom said…im going to beat this thing because i HAVE to. We can make that happen together

  3. I’ve been spending much of the day going through Lizzy’s articles and her last one summed up so much about her life: https://www.myelomacrowd.org//becoming-biggest-myeloma-advocate-must-tips/

    In the short time I knew her, I kind of took for granted that she would come out of this OK. She was was too happy and spirited and would somehow overcome. Now I understand why she never took anything for granted.

    Thanks for your heartfelt tribute, Jenny. My thoughts go out to her family at this difficult time.

  4. Thank you for that. Even though I did not know her pesonally, I could tell she was a spitfire. I am deeply saddened at losing her. She will be in the hearts of many.

  5. Martha Armstrong on

    Stephanie Holmberg took the words out of my mouth! I always read Lizzy’s posts and passed them along to friends who had any form of cancer but especially to those with MM. My heart goes out to her family….especially her children, her parents and her husband, Bill. As Stephanie said, I hate this disease!

  6. Madeleine Deveau on

    So saddened by this, Liz was a warrior and so inspiring. Well said Jenny, may we have some of her courage as we journey with MM.

  7. Jenny, I am so incredibly devastated by Lizzy’s passing! I feel like you 2 are my myeloma girlfriends, battling this evil disease together. Your tribute is beautiful and inspiring. I donated to the Myeloma Crowd in her honor yesterday. I will post her story on my blog, as I do with so many Myeloma Crowd articles. I can’t believe stupid myeloma stole her life . I am so sad for her daughters and new husband! She fought hard and we all learned so much from her posts! She will be so very missed. She was a powerful force in so many many ways! I can’t believe this happened to her! We’ll all forever be asking “why”, “how”, how come beautiful vibrant full of life Lizzy!! Thank u Jenny for your beautiful post and update. I’m writing this from the chemo lab, while receiving my Kyprolis infusion, trying to process this tragedy. Love and supportive hugs to u her friend, and her family. Julie 🙁

    • Julie, thank you for your note. I can’t believe it either! Thank you also for donating to the Myeloma Crowd Research Initiative. Liz was so excited about funding both projects to make a real difference for patients. I wish you the very best in your own myeloma journey and I hope we are able to contribute to a cure for you and us all.

  8. I did not know Lizzie but your tribute is lovely. I am an 8-year survivor, two stem cell transplants and numerous meds. I only know how to live to the best of my ability. That is something we must all do. None of us gets out of this thing called the cycle of life. We all die of one thing or another. We can only make the best of whatever we’ve been given. Take inspiration from her very active and, it seems, fulfilling life and commit to do the same.

  9. My deepest condolences to her family, friends, and all who love her.🌷
    I am a myeloma warrior as well. Diagnosed in May 2016. Completed 4 rounds of chemo. Completed 5 out-patient days of stem cell collection at City of Hope in Duarte, CA. Being admitted to City of Hope next week on Oct 11. Ready to fight and get on the healing road! I trust that God has a purpose for this and want to be there for others going through this. All for His glory!✝
    Lizzy lives in the hearts and lives she’s touched over the years.💖
    (Stupid myeloma!😔)

    • Cindy, best wishes to you as you start your treatments. Liz would tell you to PLEASE have a myeloma specialist in your corner. This is absolutely critical for your best long-term outcomes. Thank you for your kind words!

    • Amos Tumwesigye on

      Dear cindy Stott I wanted to pray for you and to tell you to be strong as I did the same procedure and though tough you will get through it I went through it in August last year and iam now transitioning going back to work full time but it was not easy but worthy it.I suffered it alone without my wife as she is undergoing immigration process it was very tough I pray for you and if you need extra information and the good excellent doctors specialists ask my email is ssebumwende@yahoo.com, my tweeter acc is mabati26 be strong and focus to have the will to live I love you and wish you all survival from the monster and indeed you will come out victorious.

  10. Remarkable tribute to Lizzy, someone who clearly approached life in the way we all aspire to along this journey. Thank you for sharing her story and allowing some of us to find inspiration to live our lives as BIG and GRAND as she did!

  11. I did not know Lizzy but saw her efforts and knew she was a warrior. I know the myeloma crowd will miss her so much. This disease is so variable and life so uncertain, but we all will keep pushing for cure. I so admire you all who, like Lizzy, work very hard everyday to help others. Your continued work is a tribute to her.

  12. Victor Thuronyi on

    Yes, very nice tribute, Jenny. This was a surprise for me because (unlike Pat Killingsworth who gave a blow by blow account of his travails), Lizzy, although sharing a lot, didn’t share all the details about drugs and treatment plans and chronology. So on seeing her last post where she talks about her treatment, she doesn’t say when it was that she went on the most recent treatment. I am guessing that she just had the bad luck to come down with pneumonia and this is what ended up ending her life? Its sad, of course.

    On the other hand, as you say, she did a lot of things right, including remarrying. Kudos to her and her husband for that! I am also guessing that her kids will be ok. A great example for the rest of us that how you live your life is what is important, not just extending your life. And writing about it for others is good too, as well as helping others in diverse ways.

    Lizzie’s immediate cause of death is a reminder that infections (and pneumonia seems to be a very common one for myeloma patients) are one of the biggest causes of death for myeloma patients, and this can occur regardless of the current status of your myeloma, but particularly if you are immunocompromised. This tends to happen from a combination of having myeloma and taking a therapy that suppresses your disease-fighting white blood cells (neutrophils) and perhaps also other elements of your immune system. So I am not feeling like such a klutz for putting on my mask when with my grand niece today, who I noticed was coughing. Of course, important to take precautions but sometimes even these will not work.

  13. What a blow! It was so easy to think of Lizzy as an adventurer- author- family person…..anything but a relapsing multiple myeloma patient. Her articles were always interesting and leading edge. She is a huge loss to our community. Though we never had the chance to meet, I will really miss her.
    Thanks for the tribute, Jenny.

  14. What horribly sad news. I was just recently acquainted with Lizzy through her blogs so didn’t “know” her that long. Jenny, I am so very sorry. I can tell you will really miss her. Our support group lost our founder several months ago and it was quite a blow. Lizzy was so young; I will be praying for her lovely daughters and husband.

  15. Jenny, very nicely written. I read Liz’s blog for number of years and finally met her this spring at your Myeloma Crowd conference this spring. Still so hard to believe she is gone. So sorry for the loss of your friend and for her family.

  16. she looked like picture of health, so sorry for her passing my sympathy to her children family and friends who will feel her loss may she rest in peace and continue the myeloma fight for all of us from above.

  17. Jenny I am so sorry for your loss and for her family and friends. What an inspiration she was. I always admired how just left her old life just like that. She was very brave. I have learned from this disease to not only pick your battles but to pick how I spend my time and not waste it.

  18. Amos Twumwesigye on

    Dear myeloma patient worriors its terribly disheartening to hear from a sudden disappearance of a dear friend from myeloma Lizz .she was the first patient I ever came across , talked to her in person .she indeed gave me hope and courage when I was empty oh what a loss .I was pushed off balance on hearing the bad news.myself iam undergoing treatment and its tough but I will heed to the advice I was given by my dear friend lizz may her soul rest in peace.

  19. Thank you Jenny for this beautiful tribute! You have no idea what an inspiration you yourself are to others. How wonderful you should honor Lizzie in this manner! I am sorry to know that a champion fighter has gone, so young, so talented, so valuable… and on and on; and, that at last she had found happiness! I am an eight year MM survivor and like Lizzie a two transplant warrior… Yes, I agree we must go on living the best way we can. Like my loving nurses at the University of Michigan Cancer Center say: “It is a new normal…not a bad thing at all.” Blessed to be under the care of MM Specialist and researcher for a cure Dr. Andreji Jakubowiak now leading the MM Team at the University of Chicago…I strongly believe in Clinical Trails and speeding up the FDA process plus the treasure of information sharing can save lives especially for women…. The more we know, the better we can help ourselves live a better life. After reading this tribute to Lizzie, I will try to be a better patient and advocate or like she would say just live life better….

  20. Jenny,
    I just found out about Lizzy just a few days ago at HCH BMT clinic and was caught off guard by the news; I’m devastated. Those of our ilk are often described as medically friable. Obviously I haven’t stayed connected, last I heard, you, Lizzy and M were meeting for lunch. You might recall, I knew Lizzy from the “get go”, I first met Lizzy as her mentor as part of the BMT clinic support, from then on she always called me her hero and a model to fight this disease. Of course, I felt quite the opposite, I considered her one of my heroes, and a model to live by. I’m going to miss my friend. Jenny, please contact me.

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