Myeloma, Party of Two: Legacies
Elaine was a fiery red head who loved her family, open water sailing, and Schlotszky’s sandwiches. She was mother to my best friend and grandmother to our godchildren. She was caregiver to her husband, whose cancer took him several years ago, and she was my friend.
She was also a patient.
In one of life’s ironic tragedies, Elaine transitioned from cancer caregiver to cancer warrior when she was diagnosed with advanced stage mantle cell lymphoma in 2012. Elaine became a patient at the cancer center where we live soon after my husband Daniel, and since then we shared many conversations, treatment updates, and hospital visits over the last eight years. Her advice was invaluable, and her insights brought with them a unique understanding of my role as caregiver and Daniel’s role as patient.
She had many treatments over the last eight years. Like Daniel, she experienced clinical trials, tough procedures, successes and failures. As her options began to run out, she underwent CAR T-cell therapy. Sadly, it was unsuccessful, and her doctors said that nothing else could be done for her. Elaine passed away last month.
I have struggled to write this column because Daniel and I shared a connection with Elaine that went beyond friendship. It was a blood cancer connection. And with her passing, I feel acutely the finality of the blood cancer cycle. It is something that only people who read this column are likely to understand. Seeing another person fight the same complicated, all-consuming struggle as Daniel and I fight – as many of you fight every day – is enough to instantly bind people together and become a heart-wrenching loss when they leave us.
Legacies are a tricky thing. Death is so final, and we want our lives to have meant something. I know that Elaine’s family could describe in detail how she was a loving wife, mother, grandmother, and friend. But for me, her legacy is not just based upon the relationship that we shared. Elaine’s legacy was what she paid forward.
Elaine was the recipient of others’ kindness when her husband David was fighting cancer. She told me stories about patients and nurses she would run into at the hospital. There were nice strangers who shared inspirational stories or who provided her with encouragement when she needed it. Then, again, when she returned to the cancer center, this time as the patient and not the caregiver, again these kind nurses, strangers, and physicians appeared. It never seemed to fail that when she was the most discouraged, one of these cancer connections gave her what she needed the most. Their gift to her became her gift to us. Just as those people paid it forward to Elaine, Elaine paid it forward to us.
Having multiple myeloma is not like having other cancers. It can be very isolating. Explaining to most people how your loved one’s chromosomal abnormalities impact their risk level, or why you’re worried about an increasing M-spike, will often get you confused looks and blank stares. People don’t understand why lasting remission is difficult, if not impossible, to achieve with myeloma. People don’t understand why Daniel is still getting treatments two years after he started them. It’s been going on for so long now that I think most people forget that his myeloma is not in remission. We rarely talk about it with other people because they can’t imagine what it is like to live with the side effects – the diarrhea, the swelling, the sleeplessness and fatigue – all while still working a full-time job.
Elaine understood. She was an anchor for us. She gave support to us in ways that we needed and could not even articulate. She listened, gave advice, checked on us during clinical trials, and made time to visit with us when we were at the hospital. It was a comfort knowing that Elaine’s wisdom was only a phone call or a text away. These past eight years would have been much lonelier without her.
Recently I began a friendship with someone whose husband was just diagnosed with smoldering myeloma. Having “watchfully waited” for six years with Daniel’s smoldering myeloma before he progressed to active myeloma in 2018, I instantly empathized with her as she is trying to navigate these new and difficult days. I hope that I can pay it forward and be for her the experienced voice of reason that Elaine was for Daniel and me. I remember so vividly how much I needed a voice of support in those dark days, and how thankful I was to connect with Elaine on how to be a good caregiver to Dan.
In the end, perhaps paying it forward is the one legacy worth striving for. All we need to do is to help. Be there. Listen. Knowing that when we do, we honor those who first helped us. I think Elaine would have agreed with that. I think Elaine would have reminded us that no one wants to leave this life early, but what we do with our time here is as important as what we leave behind.
Giving to others, paying it forward, and being a community is the best way to not only use your time well, but also create a legacy to pass on through others. I don’t want to remember Elaine’s lymphoma or how she left us too soon, but every time that I share a word of encouragement with another caregiver, or I assure a new patient that they’re in good hands, I will honor Elaine’s memory.
Legacies can be so much more than names on stadiums, university buildings, or large estates. The best legacies we can leave behind are the peoples’ lives we’ve touched. I’m thankful to have been a part of that, and I hope to continue to be so, regardless of how long we have in our own blood cancer cycle.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 and active (symptomatic) multiple myeloma in 2018. You can view a list of Tabitha's previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Dear Tabitha, I am so sorry for your loss and I send you my love and best wishes. I agree with every word you have written in your column and hope that, like you, I can take the opportunities to listen to others and share their experiences. I also find it hard to explain my condition to other people and I can empathise with the reality in which you and Daniel live. Good luck to you both.
So beautiful, Tabitha. Thank you for honoring mama in this way. I cried through the whole thing. ❤️
This is so well written, Tabitha, a description of your tremendous loss in a manner that is ultimately a message of encouragement for those of us fighting multiple myeloma and our care givers who do the real work.
Dear Marjorie, my love and best wishes are with you as well. Your columns and supportive comments are testament to your kindness and caring. I imagine that you are a joy to all who know you!
Brian, thank you so much for sharing how Elaine's story impacted you. You've affirmed my hopes, that this column would be received as a word of encouragement and a lesson for living, spoken through the voice of our dear friend. I'm so thankful that you "heard her words" through this column.
Lisa, sweet friend, beloved daughter, and "caregiver extraordinaire", you are your mother's greatest legacy. She loved you so much, not only for caring for her throughout her illness and your father's, but also for the wonderful person that you've become. I am forever thankful for you both.
Beautiful tribute and way to honor her. ❤️
Thank you Tabitha. Your column left me jolted. Not quite two years ago, I lost my best friend to a rare cancer. She was only 42 years old. She left behind parents, a husband, and two precious children. Losing someone close is always difficult, but losing someone so young and full of life is devastating.
Like you, I am doing everything in my power to honor her memory. Even though we are a thousand miles apart, I have stayed connected to her family and her children. Every time we go back home, I make sure we have time for them and include them in our little get togethers. Of course, Covid-19 has hampered that to some extent this year, but thank goodness for instant messaging and face-to-face online communication.
You are so right about legacies being more than a name on a building. Legacies are the imprint people make on your life and yours on their lives.
Glad to hear that you and Daniel are doing well.
Tabitha, I am so very sorry for your loss. You have written so eloquently, as always, and painted a picture I can see so vividly in my mind.
You are so very right, legacies are much more than names on buildings. Touching lives is truly special and a gift we can leave behind.
I pray for Daniel and his therapy. This is definitely a marathon. I don't think a lot of patients in my oncology office understand what a frequent flyer I am or how long I've been there. I want so badly to ring that bell, but in the multiple myeloma world, that doesn't happen. We press on!
Praying for you and Daniel and for many happy days ahead.
Thank you for this beautiful and beautifully written column.
We're all in this together. One day at a time.
Thank you for sharing your kind comment, Carol. I hope that Elaine knew how much she meant to all those who loved her.
Patty, I'm so sorry that you lost your best friend to cancer. I like how you put it, "Legacies are the imprint people make on your life and yours on their lives." What a beautiful way to remember her.
Susan, Daniel and I know how you feel about wanting so desperately to ring the bell. While bells may or may not be in our future, surely "pressing on" is our big win. Thank you for your prayers. I pray that you and your family have many happy days ahead as well.
Marilyn, I agree with your comment as well - we are all in this together. One day at a time. I'm so thankful for the wisdom of this wonderful community!
Dear Tabitha,
Thank you for a beautiful column. Your words touched my heart. I’m so sorry you lost your friend, but her legacy will live on through you and everyone she touched. Myeloma certainly is unlike most cancers; we just press on treatment after treatment and pray for the best. Reading your column and those written by others never fail to give me encouragement. Knowing that others are experiencing some of my same challenges fortifies me to carry on. Thank you.
Patty
Patty, thank you so much for your comment. I'm glad to hear that The Myeloma Beacon's columns provide you with a source of ongoing encouragement. Indeed, the Beacon columnists and your comments encourage me too! I suspect that they help us all to carry on. Best wishes and thanks again for being a part of this special community.
Thank you for your lovely column, Tabitha. It is wonderful how we can relate to fellow patients and caregivers and learn from this understanding. I feel for all those I share a room with during cancer treatments and do my best to honour and respect their journeys.
This is such a great column, Tabitha, but I am so sorry that you lost such a dear friend. There could not be too many people who understood what you and Daniel were going through, while at the same time struggling with her own cancer diagnosis. I am sure that she will always be in your thoughts too.
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