Myeloma Lessons: I Have A Dream Too
Dr. Martin Luther King, Jr. had a “Dream.” In perhaps the most inspiring and powerfully delivered speech of our generation, he outlined his ambitious goal of equality for all.
I have a dream too, although mine is far less encompassing – and decidedly more self-centered – than Dr. King’s.
For many years, my dream was pretty simple: live to the ripe old age of 93, surrounded by scads of grandkids and great grandkids. Live an active life right up to the end.
And then the doctor came into my hospital room last June and told me that I had multiple myeloma. He said that it was incurable but treatable. And my dream changed.
I resolved that we would treat the hell out of this disease and, perhaps, alter my ultimate dream a bit to fit this new reality. Maybe only live to 85. Still enough time to play with the grandkids and great grandkids.
Those of us fighting myeloma and other treatable but challenging diseases know that our dreams are now subject to constant revision based upon circumstances often outside our control. The promise of new treatments gives us hope. The reality of our individual physical conditions sometimes tempers that hope and other times gives us reason for optimism.
A recent Beacon forum discussion began with the question: “Is the relapse rate for myeloma really 100 percent?” Thus began an interesting debate regarding whether myeloma was curable for some and, in fact, how you define a cure.
Unless you have immersed yourself in the intricacies of myeloma testing, this may seem like an odd debate. Whether a disease like myeloma has been cured should be a fairly straightforward question to answer. But, given the limitations on various tests used to determine the presence of the disease, how can anyone really ever be sure that a patient has been cured?
This is a dilemma not just confined to myeloma. How many of us know of friends or relatives who have been treated for cancer and then been declared “cancer free,” only to find out later that the cancer unexpectedly reappeared? And even those deemed cured still are compelled to return periodically for testing just to be sure that the disease has not returned.
Believe me, nothing would make me happier than the announcement of a definitive cure for myeloma. A cure that is clearly defined and easily verifiable. That would be a dream come true. But, for now, my dream is a bit more realistic.
Think about it this way. Most people likely have evil things lurking in their bodies about which they are unaware. From what we know, myeloma is one of those malicious things. It lingers below the surface of our consciousness, probably for many years, before it has a noticeable impact on our lives. And, during the time that it is hibernating, what difference does it really make that we have it?
Good Morning America co-host Robin Roberts wrote a book about her cancer experiences entitled “Everybody’s Got Something.” To which I would add: “But sometimes we just don’t know about it.” In this context, the debate about cure or no cure becomes secondary to the reality of our life at the moment and what we dream it can be.
Having been through the ups and downs of induction therapy, a stem cell transplant and its aftermath, and now continuing therapy in the form Aredia (pamidronate) infusions and Revlimid (lenalidomide) maintenance, my dream has evolved. It has become more specific and realistic: all I ask for now is a stable physical condition without treatment. That’s not too much to ask for, is it?
This might not be a cure in the literal sense, but it’s cure enough for me. If I can live my life mostly as I please without making significant concessions to the disease, and without having to deal with the side effects of treatment, why should I care if I have been cured in the literal sense?
Sure, there is the psychological burden of a potential relapse, but this differs only in degree from what all people must deal with, whether they have been diagnosed with a disease or not. Everybody’s got something, whether they know it or not.
For many years at family celebrations, it has been my custom to offer some brief remarks in the form of a toast. I would always conclude with the Hebrew blessing, L’chaim. For those present at these events who are not familiar with the term, I translated it as “to health.” Not long ago, I actually looked it up and discovered that it really means “to life.” But I rationalize my error by observing that health, at least relatively good health, is the most important part of a good life.
I am not naïve. I understand that all of us are dealing with serious health challenges, either our own or the ones of a loved one. You may have dreamed, as I did, for a life free from significant health concerns. But we are where we are and must adjust our dreams without giving up on their central feature: To live the fullest life possible.
Dreams are a wonderful thing. They are a set of goals that give our lives direction and purpose. But stuff sometimes happens and we are required to make adjustments. My current dream/goal of symptom control without treatment may or may not be achievable. I may need to modify the dream to account for the reality that my life presents. If that is the case, then so be it.
Dr. King had a dream that was inspirational. It was meant to light a path for others to follow. I don’t know this for sure, but I suspect that Dr. King knew that the ultimate goal he outlined would be difficult, if not impossible, to achieve in its entirety. But, by dreaming big, he hoped to inspire.
Having been diagnosed with this incurable disease, we all have dreams – like mine to be free of significant symptoms and the need for treatment – which we may not be able to fully achieve. But it is important to have those dreams and to pursue them with all of the means and energy available to us. We may not reach them, but only by setting our goals high can we achieve the most in life.
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 .
Nice to read a column that stays on the subject of myeloma. I guess it's you, Pat K and me that feel that way.
Aloha Andrew,
Excellent column! You captured my feelings very well. Who cares if I have this disease as long as it doesn't substantially affect my life. I share your dream completely.
I hope you have a great 2015. Keep on biking!
Tom
Very good article. Having mm is to have a new normal; what you do with that is up to you.
Good thoughts to end the year. We all know that even a long life is "short," and we would be wise to make the best of every day. It's just likely truer for most of us with mm. The reminder isn't entirely a bad thing.
Nicely done Andrew.
Great article! And so easy to relate and identify with. Thanks for writing a positive yet realistic account of the malady and the dreams to beat it – dreams of the warriors in this big fight and those of their loved ones!
I was just diagnosed at 38, and every time I see an old couple loving on each other, it makes me cry. I just wanted to grow old with my wife. I want to see my kids get married and have kids. I just want to see them happy.
I appreciate all of the nice comments.
Garrett, I completely understand your feelings. Most of us here have had similar reactions to our diagnosis. I urge you to educate yourself as much as possible about the disease and the many treatments available and which are being studied. Make sure that you consult with a myeloma specialist who can design a treatment plan for your individual circumstances. This disease is becoming more treatable and patients are living longer every year.
Great job Andrew (or should I congratulate Audrey because I know she wrote it while you were out riding your bike). Seriously great job, as usual and thanks for all your help as we stroll down this path together.
Don
at least with MM, we get a warning to get our affairs in order, determine what's important in life. My goal is to live to be 90, then get shot by a jealous 25 year old husband.
I agree that we can get our lives in order and also appreciate everything much more. Very good article and true. We have to accept life as it is now and make the most of it. Not wasting time on blaming anybody oranything for mm. It is random.
Nicely written article, Andrew. It is encouraging for M.M. patients and will help to set their priorities and manage them efficiently. Congratulations for your very good article.
I was told I had multiple myeloma a little over 2 years ago. I remembered that day when my doctor told me the news. The doctor told me that the disease is not curable, but treatable. For the time being, I am just having to get my blood checked every 3 months and a PET test yearly. I told myself that day no looking back; I will do things just as I have planned. I feel great for 60; I walk everyday and ride my bike daily. I refused to bow down to this disease as I will fight to the very end. NEVER GIVE UP!
Thank you for this excellent article, Andrew. It's a great start for 2015. L'chaim - to life!
Well stated and right on target. Nobody knows what life has in store. The day before I was told I had MM, in my mind, I just had a sore side – just another pain that would go away. And, in time, it did. The difference now is, I have to keep checking and testing. But it isn't bad. It's manageable.
The big difference is, I look at the future differently now. I pay attention to those odd pains and aches and, of course, sometimes imagine the worst. Then I realized that I probably had those pains for a while before I was told about the MM. Staying focused on my "new norm" and how lucky I am is now a big part my new and changing attitude. Whatever the future brings, I'll just deal with it as it occurs. That's what life is and where I need to refocus.
Happy new year to all!
Well said, Andrew. I was diagnosed with SMM two months ago at the age of 63. Before then, like you, I had the same lofty dream of living to a ripe old age of 90! I was humbled after meeting a 38-year old with astrocytoma and a 66 year old with hepatoma. I guess I should consider myself relatively lucky, having been struck by this random affliction that hangs over us all but which, in the grand scheme of things, is responsive to modern medicine. I will fight it and hope to lead a normal life ... like playing my golf!
Thank you Andrew. Keep on writing.
I am currently on a trial schedule taking an investigational drug for multiple myeloma, which I have been dealing with for 6 years now. I have had two stem cell transplants and both have been successful so far in giving me a quality life, day to day. I am taking oprozomib orally. I feel that, if the new drug works successfully for me, it will help my brothers and sisters dealing with the multiple myeloma also.
Thank you for all you doctors and research doctors for trying to aid us and equip us with cures and hope.
Sinecerely, Sid Simpson