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Myeloma Lessons: I Have A Dream Too
By: Andrew Gordon; Published: December 31, 2014 @ 1:04 pm | Comments Disabled
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? [1]” 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 [2] (pamidronate) infusions and Revlimid [3] (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 [4].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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URL to article: https://myelomabeacon.org/headline/2014/12/31/myeloma-lessons-i-have-a-dream-too/
URLs in this post:
[1] Is the relapse rate for myeloma really 100 percent?: https://myelomabeacon.org/forum/relapse-rate-multiple-myeloma-t4501.html
[2] Aredia: https://myelomabeacon.org/tag/aredia/
[3] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/
[4] here: https://myelomabeacon.org/author/andrew-gordon/
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