Myeloma In Paradise: Who Do You Tell?
It’s been a few years now since I was diagnosed with multiple myeloma, but I still continuously face the dilemma of whom to share this information with.
So far I am lucky to be (outwardly) asymptomatic and, other than the steroids helping me to get a little fatter, I don’t look any different than I did before I was diagnosed and started treatment. I therefore have the option of choosing whether or not I tell people I have multiple myeloma.
Of course, the people who know about it and don’t see me very often continue to greet me with the “you look great” comment. Those who don’t know what’s going on must just attribute how I look to my natural beauty (insert joke here).
However, who to tell about my myeloma, both on the professional and personal sides of my life, was actually a serious issue for me, especially in the early days of my diagnosis.
When I was first diagnosed in 2012, I was in the early stages of a multi-year project that took a lot of time and involved a lot of meetings. I can clearly remember addressing my clients in a room and wondering if they knew that something was wrong with me. When I began my induction therapy with Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasone (Decadron) a few months later, having to meet with clients while in a chemo fog was really challenging!
During these early months, I had an inexplicable desire to tell all of my professional associates that I had multiple myeloma. It didn’t matter that I had no visible symptoms or limitations on my physical abilities; for some reason, I needed to let them know. Luckily, I had a good psychologist who worked with me to examine why I felt the need to tell them and to eventually talk me out of it.
It turned out that I was looking for sympathy. I also wanted to show everybody that I was strong enough to continue working even though I had this terminal disease. While this revelation about my diagnosis may have made me feel good about myself for a few minutes, it could have had serious implications on my consulting business, where clients trust me with large projects that usually take many months, or even years, to complete.
Not everybody would be comfortable giving a long-term project to a cancer patient, no matter that the illness has not yet begun to cause me significant disability. It’s the headline “Cancer” that they would be forced to pay attention to.
While I have made a conscious decision to never lie about my condition, I have also made the decision that I will not share the fact that I have multiple myeloma with anybody that is a professional associate. I have continued to follow this strategy to this day.
Implementing this strategy has not always been so easy. As probably is the case for most business people, the lines of who is a professional and who is a friend often cross and blur for me. However, I have been able make this distinction, and so far my medical condition is not known in my professional circles. At the same time, I have vowed that if I begin to have symptoms that I cannot work through, I will share my condition with my clients before I take their project on. I think it would be immoral of me to begin a project that I couldn’t complete.
Beyond the professional implications of the question of who to tell, there are also the problems of which friends and acquaintances to share my diagnosis with.
I mean, how do you bring this up? “I hear you caught a bunch of fish last week. That’s excellent! Oh, by the way, I have terminal cancer?” That just doesn’t work.
My insecurities before I got sick were the driving factor in my desire to tell anyone and everyone about my diagnosis. My wife and I just called up and directly told all of our close family and friends. They wanted to know the same way that we would want to know and help with any of their major problems. That part of the equation was easy and still seems pretty logical.
For our children, who were 11 and 12 at the time, we waited until we really thought we understood what I had and what I was facing, then we sat them down and shared all they needed to know as honestly and openly as we could.
The harder part has been the friends and family who are on the periphery of the “need to know” basis. With my counselor’s advice ringing in my ears, I withheld my diagnosis from anybody that wasn’t in our inner circle. As time goes by, it has gotten much easier for me to not share my diagnosis.
As of now, I no longer have the desire to tell everybody. I have gotten much more comfortable with having multiple myeloma, partly due to becoming more informed about what I am facing, and partly due to the maturity I gained by facing my own mortality.
Now I look at my disease as something that I only share if the person really needs to know. It turns out that the people who really need to know are a pretty small circle. I’m finally comfortable with that.
I have been blessed with the time of symptom-free health to figure out the answer to the question who to tell.
For those of you who are recently diagnosed, I encourage you to be patient. Tell the ones who need to know; you know who they are. Most likely they are the same people who you would hope would tell you about their life-threatening condition, not so that you could give them your sympathy, but so you could let them know that they are loved.
Aloha and carpe diem!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Tom,
I, like you, have not told many people about my diagnosis – just my family and doctors. When I was working, I did not want people trying to keep doing things for me because they thought I did not have the stamina. I did tell two people at work when I had my stem cell transplant, in case I did have to ask for help early on after that time. Since then, it has not come up as a subject in conversation, nor have I felt the need to tell other people. It is necessary to tell your doctors, however. Fortunately, I can go exercise at a place that is free to cancer patients, so we can freely discuss things. We usually do not discuss cancer but lots of other things. It is reassuring to know that I do have this outlet.
Tom,
Loved your latest column. When I was diagnosed, I really didn't want my friends and associates to know of my cancer. I've always tried to be a private person and felt this would draw too much attention to myself. But due to the loss of height (5 inches / 13 cm), I had to let folks know. I didn't want sympathy nor help because I would normally take care of my own concerns. That was short lived, as I needed help going to doctor appointments, filling out paperwork for disability, and prepping my home for my new physical limitations. Now I approach life as an advocate for multiple myeloma and inform everyone I meet of the symptoms that could possibly be indicators of the disease.
Multiple myeloma in fact restored the outgoing personality I had in the military and showed me that everyone has a purpose despite a diagnosis of an incurable cancer.
Again, great column Tom.
Kully
Sage advice Tom! We have taken the same route and only shared my husband's diagnosis with very close friends and family. Like you, my husband does not look like he has an incurable cancer, and those who know of his condition are always surprised at how well he looks. Of course, he still has "bad" days after his monthly treatment. You are absolutely correct when you state that the people you tell are really the people you love and who love you.
Hi Tom,
Wonderful column! Your topic is something we all deal with. Maybe most intensively when we are first diagnosed, but it's a continuing question as we meet new people.
As you allude to, I don't think there's a one size fits all answer to this question. For some people, keeping the news as close to the vest as possible is best; for others, maybe sharing a bit more widely is helpful. Also, one's professional situation can have a lot to do with who you want to (or need to) share the information with, as you've pointed out. Some people are more private, some more open. Also the changing circumstances of the disease may dictate who you need to tell.
When I had MGUS and then smoldering myeloma, I kept that news very private. I did not want sympathy from anyone, nor did I want anyone to worry about me. But when I was "upgraded" to symptomatic myeloma, it became important to share the information more widely with co-workers so they would know why I was working from home more often. And with an even wider set of people when I went through my transplant because I went on disability for several months.
I did learn an important lesson. If you have a daughter who wears her emotions on her sleeve, it is best not to share even the news that you have MGUS with her while having lunch outside a cafe in Paris. My daughter was studying abroad in Paris when I got the MGUS news, so I waited until I took a previously-scheduled trip over there to tell her in person. I didn't think it was that big of a deal, but she sure did!
So there could be a whole other column on choosing the appropriate time and place to tell someone, once you've made the decision to share the news.
It's not an easy question, but, like you, I've become a bit more comfortable in dealing with it - in my own way - as time has passed since my diagnosis (or I should say, diagnoses).
All the best to you!
Mike
Hi Tom,
I really enjoyed reading about your thought processes and your current posture on telling people about your multiple myeloma. When I was first diagnosed, I asked my oncologist how to tell my adult children, and he asked me why I wanted to tell them. My answer was truly me – that's who I am. I thought long and hard about how to tell them I had multiple myeloma, so I was very careful and didn't overwhelm them with information. It's been nearly two years since then, and now they want to know about every test result and how I'm feeling. They were helpful when I was very fatigued and had a continuous upset stomach, but now that I'm doing very well on my current treatment, they are happy and excited with me when I give them new information. Every time we talk seriously about multiple myeloma, I remind them that this disease fights back and that I will always have to be on alert.
Soon after I was diagnosed, I retired from active work. I had been an elected member of the Maryland State Senate for nearly 20 years and a lobbyist in Maryland for 13 years after that. I retired because I hated the commute and it just happened to coincide with my diagnosis. I am still active in some governmental issues as a private citizen, and I have been fairly open with the people I consider either work friends or personal friends about my status. To a person, everyone has been supportive, but not "O you poor dear" people. I think that's because I've been very matter-of-fact about it.
If I was still an active lobbyist, there is no way that I would let anyone outside of my closest friends and family know about my illness. I think people are terrified by the word CANCER even if they see that you are functional. You are taking the only logical course of action and I applaud your decision. It's really very "freeing" for me since I don't have to remember who knows and who doesn't. If I were still in the work force I would do exactly as you are doing.
Good luck on your journey and thanks for writing.
Barbara
Great column and really interesting and important topic.
I was diagnosed at 43 and work in financial services. Due to the nature of my diagnosis – advanced stage and significant deterioration of my hip – I needed to be off my leg and on crutches. It had also been pretty obvious to my work colleague that something was wrong beyond the leg prior to diagnosis. I also really wanted to work as much as I could through treatment and was able to get through induction with Revlimid, Velcade, and dexamethasone (RVD), and then a transplant, while working for the most part. How effective I was, I can't say, as that period is a bit of a fog now. So my choice was to be transparent and just tell the people who deal with me everyday.
It has worked for me. My firm has been incredibly supportive and I would list my firm, my family, and my doctors as the three legs of the stool that keep me mentally and physically healthy. I am the first to say that I am so fortunate to have had the scenario play out this way, but if I had not been transparent, it could not have. It is easy to imagine a different approach if I were in a different situation.
Also, now I work very hard to keep up the appearance that I am fine and I am, but like many of you, I still need to deal with the maintenance regimen and appointments, imaging, etc.
Just wanted to share perspectives.
Tom,
I like your advice about telling others on a "need to know basis". When first diagnosed in 2012, I didn't tell the immediate family right away, and when I did, I made it clear that I didn't want advice on what to do by a couple of well meaning in-laws who are nurses. I think it was difficult for my husband during this time as he had more of a need to talk to others about it.
Initially I was symptomatic due to the anemia that led to my diagnosis. It was difficult to keep it from my four co-workers (I was their manager), especially when one day I had a blood transfusion and hid the IV site that was kept in so I could have a second transfusion the next day. This all was happening while at work as I was a nurse manager in a hospital and two of my co-workers were also nurses. The staff thought I was at a long meeting. Within a couple of weeks I did tell my four staff members and my boss, as they "needed to know". They were wonderful and supportive and, per my request, they did not tell others and would deflect any questions accordingly. I kept it this way for quite awhile at work.
I relapsed in 2014 and went on LOA, disability, and retired in 2015. As time has gone on, I have become more open in discussing my diagnosis. I agree that when newly diagnosed you need to give it time and careful consideration on who to tell, how to tell (thinking of children and elderly parents), and those at work who need to know.
Diane
Hi Tom,
This was a wonderful article on a difficult topic. I believe that this decision is definitely an individual one, and it also depends on how sick you are at diagnosis. When I was diagnosed, I was a professor in a nursing program that was undergoing a key accreditation. Within 4 months, I was undergoing an autologous stem cell transplant. I really didn't have a choice. The sense of loss I experienced from taking sick leave at this time was almost as devastating as the cancer. At that time I didn't have a choice who I told.
What I appreciate about your personal experience is how you explored your motives and responsibilities in an ethical and authentic manner. Your advice to newly diagnosed individuals – to have patience with the process – is right on.
The other challenge as the years go on with a chronic cancer is how to communicate about a remission – with whom and how much.
Thanks for your writing,
Maureen
Hi Tom,
Thank you for this fine article. I always enjoy your columns, and your attitude! My husband was diagnosed with multiple myeloma in 2013, after suffering some pretty severe vertebrae fractures. I was his caretaker for a few months while he was recovering, and then again last year, when he had a relapse.
He is retired, and back on the Revlimid regimen - doing better, except for the shingles he recently contracted! Anyway, I was struggling with caring for him and trying to keep a very active real estate business going. Initially, I shared his condition with a few clients, in hopes they would understand my having to send in another agent to help out now and then. I also hired a caretaker when I needed to be gone from the home.
Bottom line – the clients "seem" empathetic, but, in reality, they have a personal need of their own to buy or sell a house, and if I wasn't available, they were ready to move on to another agent. I, then, decided it's best to keep my personal life completely separate from my business life. There are times when I meet with someone who is experiencing some medical issues, or has recently lost someone to an illness, that I will share a little bit, but I agree, it's best to keep your personal matters to yourself.
Keep up your great attitude! And, thank you!
Tom,
Thanks for an interesting column about who you share a diagnosis with! When I crashed in 2009 with vertebral fractures and the immediate need for chemotherapy, plus having a stem cell transplant some months later, all I could do was to focus on getting well again. I work part time with my husband, and had financial matters to attend to, and did manage to do that. I had help from professionals with that. They were surprised that I could still function at all, I think! I did not have disability insurance, but in retrospect, that might have been a good idea to have that.
Thus, many people knew of the myeloma and offered a lot of sympathy and support. In return, I would listen to their problems too. Eventually, I decided that my best area of helping others would be the writing and also in related work, including educating others about myeloma. So I will talk about it with anyone who is interested in the subject now. Since I am a 'senior' now, I don't need to worry so much about my future career possibilities.
Thank you, Tom, for your columns, and this recent one on who to share your diagnosis with. I too was working at the time of my diagnosis, in the emergency department of our local hospital. After my transplant in May 2012, I felt that I could not return to work in the hospital because of my compromised immune system (all the super bugs, etc). I was very upset to have to leave my job as I had been in the medical field for many years – thirty years at this hospital. So most of my friends at the hospital knew about my diagnosis, and I felt alright with this.
Aloha All,
You people are AMAZING!
I am absolutely floored at the response to this article. I wrote about a topic that quite frankly I was not sure would spark a lot of interest. Your thoughtful and in-depth responses illustrate that, as usual, I was wrong about the importance of the subject. This actually affects many of us.
For anybody who is just finding the Beacon, I can't imagine a better illustration of the power of our community. You folks who read the Beacon and respond in such a thoughtful way create a resource for everybody who has a question about how to deal with our myeloma situation. No matter what the situation is.
Thank you very much for making my articles much more powerful than I ever could.
Aloha and Carpe Diem!
Tom
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