Myeloma Lessons: Time
In most editions of this column, I focus on lessons I have learned while dealing with multiple myeloma. My hope is that what I have learned will help others.
This month, however, I want to talk about a lesson I learned many years ago – a lesson that has been reinforced by what I have gone through since my myeloma diagnosis three years ago.
When I was a young man, before I had children, I was like many fresh-faced lawyers and other professionals – ambitious and focused on my career. I knew that long hours and dedication were necessary to get ahead, and I was only too happy to do what it took.
Then the little ones came along. It was not long before it dawned on me that every extra hour that I spent working was an hour taken away from family time. I realized something elementary, but which had eluded me to that point in my life.
Whether rich or poor, young or old, no matter our color or creed, we all have the same amount of time. Sixty minutes in every hour, 24 hours in every day, and seven days in each week. Regardless of the resources at your disposal, you cannot buy extra time. And once that minute is gone, it cannot be retrieved.
Once I began to appreciate this fundamental truth, it colored much of my decision making. Perhaps not surprisingly, it particularly affected decisions I made about my career. I turned down good jobs because the time commitment to do the job right would have taken away from my ability to spend time with my family.
Like most of us, when deciding what kind of parent I wanted to be, I examined my own childhood and determined to do things differently than my parents had done. My parents were kind and loving, but I felt that we could have spent more time doing family stuff.
So I thought of it like this: I could be very successful in my career – perhaps even a “star”, professionally speaking – but I chose instead to be the best dad I could be.
I did not attend every single kid’s event, but I made it to most of them – the away tennis matches, seemingly endless horse shows, piano recitals, and football games.
I often kidded myself that I was doing this for the kids – to support them – and that was true. But it was just as much for me. Those times are fleeting, and what you miss you can never get back.
We myeloma sufferers and our loved ones also care about time, but largely in the context of how much time we have left. We focus on “progression-free survival” and “overall survival.” Those time spans define how we are doing dealing with and beating this disease.
I would be last one to argue that survival times should not be an important focus of our battle.
But how we use the time we have, and the decisions we make in dealing with the disease, can be just as important.
One of the most obvious applications of this is the decision regarding continuing to work. For some, there is no choice to be made. The effects of the disease can be debilitating such that continuing to work is not an option. In other instances, money is tight, so despite the diagnosis, continuing to work is necessary simply to pay the bills or continue to be eligible for health insurance.
Some, however, are fortunate enough to have a choice.
In my case, before my diagnosis I was toying with the idea of retiring several years down the road. After I learned that I had multiple myeloma, I was determined to retire once I had finished my initial treatment and recovered from my transplant.
I worked in a political environment in a position that was vulnerable to changes in the administration, so when a new governor was elected, it seemed like a good time to get out. The new folks tempted me with an offer to stay on in a position more challenging that the one I was in at the time. I was not persuaded to change my plan.
I knew that my time was finite, both day-to-day and in the ultimate sense. It was more important to use the time I have to be with those I loved and to do the things that made me the happiest. (In the interest of full disclosure, I did take a part-time job, but the terms of that position do not require that I put in a pre-determined amount of time.)
The recognition that each day is precious can have implications for other decisions we myeloma folk have to make. For example, it may be that a particular treatment regimen or clinical trial would require that we be away from home often, or for long periods of time. Is that the right choice for our overall quality of life?
Of course, no one would argue that we should allow concerns about time to automatically override what is the best choice for dealing with our disease.
My point, though, is that consideration of how we parcel out our most precious and finite resource deserves to be an important component of every decision we make.
Time. Use it wisely, because you can never get it back.
Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Andrew, I just finished reading your article. You are so right about time, and how important it is to make use of our time wisely. There are so many choices to make with multiple myeloma, from doctors, locations, treatments, retirement, or continuing working and etc. that sometimes we forget to spend the time with the people that are the most important to us, or doing things while we still can and are able to.
Very good article, Andrew. I too am a professional and throughout my life I recognized that's the priorities are God, family, and then whatever else we value. I practiced this prioritization throughout my life, and my family and I have been blessed. I retired at 53, because my son was graduating from college and he no longer would need financial assistance. My wife and I simplified and dedicated our time to volunteer work. We did this for 11 years, then came myeloma. So use your time wisely, set priorities, you will never regret it.
It's been 5 years now with myeloma, and I am so happy I spent my time as planned. If I would have postponed retirement till 65, those cherished experiences of spending 11 great years working with my wife would not have happened. Thanks for the insight you provided for all of us with myeloma to spend our time wisely. Once it gone, it's truly gone.
Andrew,
We have a lot in common. Besides the bike riding, I too am a lawyer but work in house as tax executive for a large privately held company. I have been thinking about time and retirement more often now since turning 64. My decision as to when is being driven primarily by medical insurance concerns. Besides my obvious needs, my wife has some serious medical issues as well. She is two years younger than I so my goal is to work until she qualifies for Medicare in 2 1/2 years. At my office I have a great staff and understanding executive team that enables me to be flexible. I have 4 boys that I put through college and like you attended as many of their events as I could while they were growing up. Work life balance has always very important to me and I promote that with my staff. Now that the boys are all grown and we are empty nesters, we are looking more closely at retirement and what it will look like. So far, I have been able to do almost everything I want without the myeloma restricting me to any large extent. So for now, I am staying with the plan to work for 2-3 more years. That of course can change if I have a serious relapse. I think there are a lot of late 50s and 60 something myeloma patients going through this type of analysis.
So beautifully said. I am always encouraging everyone to use our time to the best. And you never know what tomorrow holds but take today and just spend it wisely. Thank you for this.
Lesli Garris
Thanks all for the kind comments.
Eric - Although I have not been retired as long as you have been I feel the same way: this time has been so well spent.
Ron - You bring up a good point about insurance. That is a prime consideration. I am fortunate to have great health insurance which made my decision much easier. Happy to see that you have plan but are willing to be flexible about it.
Andrew
Great article. I'm 62, still working but I'm lucky that I can work from home and handle all my work on my laptop. Insurance is a concern, that's part of the reason I continue to work, but I also enjoy what I do. Oh there are days that are more challenging then others, but having the flexibility to work from home and spent more time with my wife and family makes it great.
Let's all enjoy the time we have.
Excellent article Andrew, and even more important, excellent advice. Many of us can identify with your life experience and the importance of using what time we have to the best of our ability. I cannot believe I am saying this, but we were fortunate to have just retired when we learned of my husband's multiple myeloma. Of course, he was not fortunate to be diagnosed with myeloma, but the timing was extraordinary. Because we were already retired, we made some significant decisions that might have been impossible had one or both of us been working.
Like you, we value our time with each other, with our two boys and with our dear friends. We carefully plan our life around his treatment regimen and our periodic trips to the treatment center. Since the fog of initial diagnosis has faded, we are much more confident on what treatments to pursue and when to schedule our appointments.
Continue to share your thoughts and experiences - they are so helpful and hopeful.
I'm 61 and still working primarily because I can work at home.
Paradoxically, I think I work more hours than I did previously, because the work is always right there! I would have continued working for my previous employer but he was, shall we say, not a particularly nice or fair person, and about a year after my myeloma diagnosis, I decided I had had enough. But I wasn't ready to retire. If I were going to continue working, it would have to be a more pleasant environment. Fortunately, one of my colleagues of many years offered to take me on and allow me work at home. I realize how lucky I am with this situation. It's really a "no questions asked" arrangement. I am a commission-based sales person, so it's all a question of numbers, not hours.
The thing about time that affects me most now is that I am impatient with others who know of my illness, yet waste my time. I am particularly sensitive to people who keep me waiting. Strangers, I forgive. But those who know of my condition and who don't respect the fact that I am trying to make the most of whatever time I have, do annoy me.
Great column, Andrew!
If I had the choice, I would retire. At my stage in life, it is not an option. But on the days that fatigue hits, I find myself wishing my life away (ironically) that I was further along in my life and had the option to slow it down and smell the roses – i.e, retire.
However, to give up working from my point of view is to say that multiple myeloma is winning the race and knocking me over, and that can't happen for sometime yet.
I have also found that with friends my age, how different their outlook to life is to mine. They look forward to going out, I look forward to sleeping.
Only a terminal prognosis can give you the perspective that most of us have. As many have said in the past, in some weird sense, it is both a blessing and a curse. I do have a new found appreciation for things I took for granted in the past.
Thanks Andrew for the thoughtful column. My husband and I spent a lot of time with our children as they were growing up, and those memories are precious now! I drove 'Mom's Taxi' for many years, as they had many after school activities – from music lessons, skating, swimming, badminton, Brownies, Girl Guides, and more. I still work in bookkeeping part time, since my husband and I have worked together since our first child was born, in 1983! That is a focus for us together that needs to be done, for his medical practice. When I was first diagnosed, I found that my work was something that I could hang on to, outside of the worries of being a cancer patient.