My Myelomaverse: Time To Tell
I was diagnosed with smoldering myeloma in 2010 when my children were 7 and 10 years old. Three years prior, their Dad drowned after being ejected from his surf ski, a specialized lightweight kayak.
I’ll never forget sharing the news of his accident with my children. Their Dad was in a coma in the intensive care unit. They were so young, it was such a shock, and they came up with what I thought were very sophisticated questions. “Is he going to die?” my eldest asked. “Most likely,” I replied. “No, what are his chances, Mom?” he insisted. I had to be honest. “He is going to die,” I said. “He got too cold and his brain stopped working.”
My son got busy making a hat for his dad out of some golden fleece we had lying around. As our kid, he knew the importance of keeping your head warm to retain your body heat. As a Waldorf student, he had some basic sewing skills.
Fast forward three years. I didn’t have the heart to break more bad and terrifying news to my children at the time of my diagnosis. I felt like we had just come out of the shock and the initial grief of their Dad’s death, and were becoming accustomed to our ‘new’ normal.
I had just purchased a house with enough of a yard for shooting soccer goals, trampolining, chasing chickens, and planting vegetables. We were getting used to just the three of us around the dinner table and navigating holidays and Father’s Day. I had developed a whole new level of parenting stamina: volunteering on a weekly and sometimes daily basis, chaperoning field trips, traipsing around the state for soccer games on the weekends, taking care of the various needs of my kids, learning how to deal with my own ongoing grief, and theirs.
I felt fortunate to have the time and freedom to parent on this level; it was a gift. I didn’t have the time or the bandwidth for my own diagnosis.
I told my closest friends and solicited their advice. Do I tell, or not? Some were supportive of my decision to hold off, others were not, citing that my kids would hate me in the future if they knew I was withholding information. They thought I’d create trust issues for my kids. This was a chance I was willing to take.
Although I was handed a “Preparing for Transplant” binder at my initial cancer center visit, no one could tell me just when that might happen. Statistically, it was likely to be within two years. I felt like there was too much uncertainty around my rate of progression to warrant disrupting the status quo in my kids’ lives. As the last parent standing, I knew that my kids’ biggest fear was that something would happen to me. It was something that caused a lot of anxiety, necessitated tearful late-night conversations, lots of reassurance (“I take good care of myself”), trips to the therapist, and discussion of ‘the plan.’
I wasn’t having it. So I waited and waited, trusting that when it was time to tell, I would know.
Keeping my medical issues private took some intention. Although I told my siblings my diagnosis (with explicit instructions not to share the news with their kids), I kept my diagnosis from most friends. I had to develop language for my kids around why it was necessary to avoid germs, like when we flew and disinfected our seats, tray tables, and armrests. Why I carried hand sanitizer hanging from my purse, and used it a lot. Why I didn’t eat at buffets. Why I didn’t allow their friends over if they were sick. “I have a wonky immune system,” I said. They never once asked why.
I scheduled my doctor’s appointments and tests at the cancer center to occur during the school day, racing back and forth to be home when they came home from school. I got a post office box so that no correspondence with the word ‘cancer’ ever came into the house. I wanted their childhoods to be as carefree as they could, despite their earlier trauma, and I didn’t appreciate random reminders of my situation showing up in my mailbox.
The time to tell came when my bone marrow biopsy in March of this year, my second in 10 years, revealed 60 percent plasma cells and I was told I needed to begin treatment. At the same time, the first COVID-19 wave was cresting, and my son had to leave his college campus and return home. There was no way I could keep this private anymore; every cell in my body was telling me it was time to tell. And so I did.
Over my life time, I’ve learned the value of safety nets, or scaffolding, as is the trendy term. I first consulted with my kid’s counselors about how to go about breaking bad news to teens. They advised finding a neutral location, using language they could understand, not giving too much information at once, and letting them guide the conversation.
I followed their advice. My children and I along with my partner met on a Saturday in late April, in a conference room in my partner’s closed office building. We each sat in a corner of the room, so we were physically distanced. My college student had been home from campus for barely a week and was quarantining at my partner’s home. My younger son thought we were just getting together for a family chat. I brought along some Kleenex and a whole lot of brave. Telling my kids was what I had been dreading for 10 years. I knew it would be heartbreaking for them. I felt queasy and lightheaded, but it had to be done.
I started by saying it was good to all be together. Then I started choking up. After taking a few deep breaths to steady myself, I continued. I could see alarm dawning on their faces. I referenced my wonky immune system, and explained that I had tests done recently to try to get a better picture of what was going on. Then I named it – multiple myeloma – and said it was a blood cancer.
My kids were shocked and stunned. They had no idea. I answered their questions, I followed their leads. This time, it was my younger one who wanted to know the prognosis. My older one did not. But I gently presented it anyway, because I didn’t want them to leave the conversation thinking that I might only have a few months to live, as was the case with a family friend a few years earlier. I tried to focus on the positive, using words like ‘treatable,’ ‘chronic,’ ‘drug developments,’ ‘stage 1,’ but also including the word ‘incurable.’ I wanted them to know the full story. I promised them transparency from here on out.
Over the ensuing weeks and months, I have had the chance to double back, to talk some more, to clarify, to process, and to be transparent. This processing is familiar territory for us. When a parent dies when children are young, kids deal with their grief to the ability of their developmental level. These levels change every few years, and new feelings come up. I’ve always encouraged ‘feelings’ conversations, and I’m grateful we have that type of communication down pat. I flat out asked my children if they were angry at me for keeping my smoldering myeloma diagnosis from them, and they emphatically said they were not. They understood my rationale, but said they were grateful I was telling them now. I really needed to hear that.
And although COVID-19 has robbed me of the ability to hug my partner and kid – and has made life more complicated, and frankly, a bit more terrifying – the intersection of the pandemic and the progression of my myeloma has forced me to come to terms with one of my biggest fears: telling my kids about my diagnosis. I can cross that one off the list now, exhale, and move on, feeling a little more free. That, for me, is the silver lining.
May we all go from strength to strength!
Else Sokol is a multiple myeloma patient and columnist here at The Myeloma Beacon. Her column is published once a month.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
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Else, what a strong and positive person you are! Stay strong and positive and your kids will follow your lead.
Aloha Else,
Your story gave me chicken skin! I suspect this is a scary and confusing time for you and your family. I remember this time all too well. Thank you for sharing it on the Beacon.
I am writing to offer you some hope. I was diagnosed in 2012 when my boys were 11 and 12 years old. While I have a wonderful wife, I was still sick with worry about being diagnosed with a terminal disease and leaving my young children without a Dad. I vowed to do everything I could to get them to at least young adulthood before I passed, but wasn't sure it would be up to me.
Fast forward to 2020 and I am still here! Not only surviving, but doing pretty well. Myeloma is definitely a part of my life. Treatments, blood tests, a stem cell transplant, countless doctor appointments, all of the side effects of treatments, and minor symptoms of the cancer itself make this an unignorable feature in my and my family's lives.
But once the fear of the diagnosis diminished, I also was given a renewed urgency to enjoy every day. I am still able to help my wife with our business and spend as much quality time with my boys as possible. That even includes fishing, hunting, surfing, golfing, and general goofing off.
I'm not able to keep up with them, but I am able to be a part of their lives, and I have succeeded in seeing them to young adulthood. Due to tomorrow being so uncertain, I think it even made me a little better a father. We certainly didn't put off much enjoyment to another day.
With today's treatments, it is possible you too can still enjoy seeing your children finish growing to adults. Have patience with yourself getting past this initial "diagnosis phase." It generally gets easier with some time.
Wishing you all the best!
Carpe Diem & Aloha,
Tom
Hi Marilyn. Thank you for sharing your kind words of wisdom. Wishing you well!
Tom, Aloha! I hope your chicken skin reaction wasn't too uncomfortable. I'm psyched to hear that you are doing well after 8 years and have been able to shepherd your boys into young adulthood. Hope received, thank you! This initial diagnosis phase is indeed a big hurdle, and I'm grateful that we have some time to get used to it.
Wow, I don't know how you kept that a secret all those years! But now you have an even bigger support system. I know they are your biggest cheerleaders!
Thanks for the article. I remember trying to figure out how to tell my kids about my diagnosis. There's a lot out there that's instructive regarding the disease, the treatments, how to best get through them, etc. There's very little regarding how you break this news to the important people in your life, particularly your children, and particularly when you are struggling with accepting the diagnosis yourself. I suppose it's far too personal for a nice little pamphlet to deal with. All we can do is the best we can do, and I think it's clear you did that quite well. And for what it's worth, I received my diagnosis the same year Thomas received his. I'm still here as well, and I hope and trust that you'll be around for many years to come.
I nominate you for “Mother of the Year.”
Susan – It was challenging at times, but I was committed. And yes, having their support isn't something I ever thought about, but now that I have it, I can feel the strength it gives me. It's awesome!
Mike – Thank you for your kind words of hope, and way to hit the 8 year mark! I suppose that 'the pamphlet' doesn't exist because treatment is so focused on the body, leaving little time for, or attention to, the mind and spirit. How can we change that?
Craig – Ha! Thanks for the chuckle.
Dear Else,
It is amazing to hear your story. I am so sorry for the loss of your spouse! You have been such a good parent, and I agree with Craig's comment. I am sure he was not kidding you! The children are so fortunate to have such a considerate parent, in sparing them the pain of knowing that you knew you had smoldering myeloma. Now that they are more grown up, they could better handle this information.
I hope that you have older adults around you too to help you to get through the upcoming treatments. I needed, and got, a lot of help from my spouse, my parents, and also my children, who were in their mid-twenties when I was diagnosed with myeloma.
Good luck with everything! Stay safe!
Nancy
Hello Nancy,
Thank you for reading and for your supportive words. As a single mom, I have witnessed the truth of the African proverb 'It takes a village,' and while most of my family lives in New England, I'm lucky to have my awesome sons, my solid partner, a bunch of caring friends, and a supportive faith community here in the Pacific Northwest, and they are my village.
Take good care!
Else, this is beautifully written. You are incredibly brave and your boys are lucky to have a mom who considered their feelings so deeply all these years despite the mental anguish it caused you. Wishing you all many hugs in the future.
Dear Else,
Yyou are such a brave and strong woman. It appears you have had more than your fair share of tragedy in your life. My husband was never diagnosed with smoldering myeloma, but we now know he probably had it for at least two years. You were so courageous to live with the knowledge of smoldering myeloma for 10 years, wondering when you would get diagnosed with multiple myeloma. Fortunately for you, yours was at Stage I. The way you broke the news to your sons was incredibly thoughtful, and now that they are older, they should be able to understand some of what it means to have multiple myeloma.
My husband was diagnosed at 64 when our boys were young adults, which made our job of telling them much easier than your situation. And of course we didn’t have COVID-19 to worry about at that time.
We wish you well with your treatment and pray for remission.
Dear Else, how my heart goes out for you. I can’t imagine how tough this is, past, present, and future. It sounds as if you did as well as is possible when breaking your sad news. I hope that somehow your treatment can start and you can reach a good remission as soon as possible. Best wishes to you.
Dear Else,
Thank you for sharing your story. You are doing a great job of managing the situation and parenting your children.
I too was diagnosed with smoldering myeloma with young children whose parent had died some years earlier. I elected not to tell them of my diagnosis in 2014 when I was diagnosed, and only told family and close friends to protect my children after the trauma of having had a parent die from another form of cancer. I started having treatment in May of this year and told them of the diagnosis when I was informed that treatment would need to begin (they are young adults now). I wish you all the very best with your treatment!
Ann Marie
Clara B – Thank you for your kind words and future hugs. I'll take as many as I can get!
Hi Patty – I appreciate your support, well wishes and prayers for remission. Thank you!
Hello Marjorie – Thank you for your hopeful words and wishes for a good remission. I appreciate them!
Hi Ann Marie – It seems we share a common path. I thought I was alone on that path until now. My heart goes out to you as I can imagine how upsetting it was for you to receive your diagnosis, and I know the resolve it took to keep your condition private as you smoldered for 6 years. I hope your children are coping as best they can with your diagnosis and treatment, and I wish you continued strength and a deep and long-lasting remission.
I relapsed when my child was three. We did not tell him anything at first, but he picked up something was wrong and asked us in his own way. We were honest at his level. You need to make the choices that best fit your family. But, after my mom revealed a big secret, we realized it is not the best way in our family to hide things.
Good luck with you treatment. I have now lived with multiple myeloma 10.5 years, so there is much hope!
Hi Alyssa. Thanks for sharing your perspective, and I appreciate your wishes of hope. Stay strong!