Jacqui, Sophia, and I just returned from the San Francisco where I gave the keynote address at the North American Educational Forum on Lymphoma. We had a fantastic week in San Fran. What a great city.
Here’s the talk:
Remission is such an ugly word. At least it is to me. And I suspect that it has that same quality to many of you. Remission, that place on the lymphoma road where the signs and symptoms of our disease have disappeared, is for some a fleeting place of respite before the battle begins again, and for others a temporary stop on the way to a cure. Remission suggests something transitory; that something is hiding; lurking in our bodies in a place that cannot be scanned, probed, or extracted. But no matter the ultimate outcome, it is a difficult place to be.
Now don’t get me wrong. I am thrilled to be in remission and expect to be here either for a very long time or forever. But living in remission is, and Californians will have to excuse this reference, but it is like waiting for the “big one,” knowing that the odds are decent that it might occur in your lifetime, but, that, well, it might just not.
Two years ago this month I checked into the University of Pennsylvania Hospital for a rigorous protocol of R-Hypr-CVAD that required me to be an in-patient every three weeks for three nights for over eight months. When chemo began my wife Jacqueline was almost six months pregnant with our first child. And as if that weren’t enough, in the middle of all of this craziness two very separate events defined what I call our lymphoma year: my daughter Sophia was born on November 30th and the very next morning I found out that the chemo that had made me sick, rendered me unable to take the best care of my lovely wife during her pregnancy, had worked and had quickly put me into remission; BUT, at that same time, during that same week of miracles, my father, who himself had battled cancer for almost nine years, had a recurrence. He declined quickly, and would pass a few months later while I was tethered to an IV, unable to be with him at his end. My solace in that is that in the months before he died he was able to spend some nice time with Sophia; that despite the cruel timing of his illness, he got to be a grandfather.
Looking back on that time in my life, it almost seems unreal. I have my health and my hair back, I have a beautiful daughter who’s smile lights up our house, I have been back at work now for more than a year, next weekend I will race in my first triathlon since treatment, and just a few weeks ago I saw my doctor at the University of Pennsylvania, Steve Schuster, who smiled as he saw the results of my latest tests, confirming that indeed his work had been a great, albeit, punishing success. I stand before you here today as both a sign of the progress in treating lymphoma—I can expect a long remission and hold out hope for a cure because of the research that all of us in this room are helping to make happen—and as a symbol of how much more work needs to be done in lymphoma research and prevention—because I understand that it is likely that some day my lymphoma will return. I remain confident that events like today’s that build connections between people like us will help keep us all healthy far into the future.
But despite my success as a patient, life in remission is not easy.
I am, therefore, for the foreseeable future, of two minds. On the one hand and foremost, I am an optimist. Despite statistically intimidating odds, I have no doubt that I will get to share with my loving family the joys and challenges of a full life; that I will live see my daughter grow up and dance with her at her wedding; and that I will grow old to become a creaky and cranky old man who complains loudly about things like drafts from the air conditioning, the pastrami being too fatty or too lean, and the fact that kids today don’t know from good music or movies!
On the other hand, being a survivor of lymphoma is no easy task. Despite the fact that I am in confirmed molecular remission for almost two years now AND despite the fact that a soon-to-be-released study doubles the five year survival of my subtype of lymphoma (and I should add that this new data does not include using rituxan as part of this protocol), that every time I read an article in the medical literature that says my disease is chronic and that it can be a poor prognosis lymphoma, I want to vomit; that when friends grow sicker from the ravages of chemo, or when their chemo fails and they are forced to try more radical approaches to treating their diseases such as allo- or auto-transplants or the unknowns of clinical trials, I fear that this too is my future; and, finally, that when someone I know dies from their lymphoma— as happened recently to Amber Pedraja, one of our founding chapter members in Philadelphia—I am terrified, knowing very well that I too might die prematurely; that I will leave my wife alone with our daughter, that I will not continue to do the research and writing that I love, and that my friends will remember me not for the life I led, but for a life cut short.
These contradictions are the essence of my life in remission. They are the yin and yang of my daily existence. They are inescapable. Yes, there are moments when I forget that I am a lymphoma survivor, moments that over time have grown in both frequency and length to sometimes take me weeks without really thinking about it. But as all of us who are survivors know, and even, I suspect, those who are considered cured, we have all been irrevocably changed by our experience with this disease. And because lymphoma itself is a disease filled with contradictions—some lymphomas are easier to treat than others, some are curable while others are chronic, and while we know lymphoma is a form of cancer, popular sentiment is often ignorant of this fact—our own internal struggles are thus reinforced.
I must admit that these contradictions have had effects on me that I do not always like. The moments that feel the worst are the moments when I feel angry that this has to be a part of my life; that my wife, who lost her mother at a young age to cancer has again been forced to consider an indescribable loss and that my daughter may not always feel me close to her. I am also angry at the way in which lymphoma stripped away my innocence. My father survived cancer for almost a decade so I was not ignorant of what illness can do, but, heck, I was diagnosed at 36, three weeks after my wedding. The only way I have been able to make sense of my situation, and of the suffering and pain that I have seen around me, is to conclude that there is NO sense to make of this, and that obsessing about a cosmic cause for my lymphoma is ultimately meaningless.
I have decided instead that meaning has and will come from the way in which I live my life; the type of father, husband, son and brother I am; the way I commit myself to my friends, my colleagues, and my community; and the way I dedicate myself to improving the lives of other lymphoma patients through the work I do as part of the Lymphoma Research Foundation.
In other words, I have been forced to take from the contradictions so inherent in lymphoma to choose life. And for me there have been a couple of things that have gotten me to this place that I’d like to share with you, because I think that in shared dialog we can perhaps find our place and our peace in this. A lymphoma diagnosis is disorienting and turns your world upside-down, and one of the best things I did for myself was to talk to psychologist about what I was feeling. Not only did that take a load off my own shoulders, but it helped me defer some of the fear and anxiety away from my wife, and allowed us to take better care of each other.
Second, I dedicated myself to something that could help both keep me in physical shape and also be a distraction. The distraction part was so important because if I didn’t stop poking at my lymph nodes I might just have poked a hole in my own neck. So I began talking long walks with my family and dog, and I began to train for a triathlon. Anything that gets you out-of-doors, breathing in fresh, hopefully clean air, works. It clears the mind and I think has helped cleanse my soul a bit. When I am feeling extra-stressed relating to lymphoma in some way, I go for a walk or a run and it clears my mind. It helps me from getting too stuck in my own head.
Third, one of the ways in which I have tried to lessen the anxieties of living in remission is to, as much as possible, jettison the “r” word from my lymphoma vocabulary. Instead of talking of remission, I talk of myself as lymphoma-free. For me, it is simply a positive way of talking about what I know is remission, but my linguistic twister makes me feel better about the future.
Fourth, and I suspect this is what has brought us all here today, I have dedicated myself to doing what I can do to providing support for other patients and survivors and to finding new treatments and a cure for lymphoma. A few weeks after my initial diagnosis I spoke to an old friend who had been diagnosed a few years before me with the same rare subtype of lymphoma. He told me of his involvement in LRF, and I asked him what I could do. That began a series of discussions that led to my wife and I, along with a dedicated group of other survivors and family members, to founding the Philadelphia/Delaware Valley Chapter of the LRF. And that it what brings me here to you today.
And, finally, I never hesitated to reach out to friends and family to talk with them about what I was going through. I knew that for some it would be uncomfortable, either because of their own direct and indirect experiences with illness. But nonetheless, I took the opportunity to create a large support group for Jacqui and I, and to also create a network for my friends and family to reach out to one another. There are many ways to do this, but I decided to do it though an online journal, or a blog. You can create them yourself or you can use a web service like caringpages.com.
I named my blog baldmike.com and blogged about both the mundane and the crazy from my chemo days. I shared the gory details of how my body reacted to drugs, wrote about my fears and my hopes for the future, and joked about everything from vomit to how I was convinced that Dick Cheney was breaking into the computer at my hospital to change my counts to keep me locked in my own neutropenic prison. I even wrote about the horrible chemo-induced low-platelet nosebleed I developed on Yom Kippur that I called the “Great Yom Kippur nosebleed of 5767”. I wrote in the blog that day:
“I know there are those of you out there who are saying to yourselves: “it is Yom Kippur, Mike’s stuck at home watching horrible television for the 8th straight day, he’s too tired to read and work on his book, so he MUST have been picking his nose.” And since it is past sundown for the year 5767 and I have a full year to apologize for all of my sins, I can tell you in all honesty, that no, I was not picking, I was just scratching my nose because of the dryness from chemotherapy.
I want to conclude by asking us to consider the following statistic: non-Hodgkin’s lymphoma rates since the 1970s have nearly doubled. We have yet to figure out what has driven this dramatic increase; some studies have pointed to environmental exposures such as pesticides or viruses. But one thing is for sure: we will never eradicate this disease if we do not know what causes it. This will not necessarily matter for those of us who are either living with or have survived lymphoma. And obviously the LRF and the scientists we partner with are hard at work developing treatments and cures. But if we want to save future generations from this disease, I urge us to consider reaching out to our colleagues in the world of public health—the epidemiologists and environmental health scientists—to help us figure out the causes of this illness so that we can begin to prevent it.
Thank you for the opportunity to speak with you all today. Thank you to the LRF for all that they have done and continue to do on our behalf. And thank you to the clinicians here today who dedicate themselves to bettering our lives. Good health to us all.
I now have the pleasure of introducing you to my wife Jacqueline Rick. While many of us here today are survivors, there are also here with us here today the caregivers, friends, and loved ones who have dedicated themselves to taking care of us in sickness AND in health, and I thought that my speech to you today would be incomplete without hearing the perspective of a caregiver, in this case, my wife.
Before I bring her up can I ask all of the caregivers in the room—all of the husbands, wives, partners, lovers, and friends and family to please stand up and be acknowledged for all that they have done for us.
Jacqueline, not a day has gone by in our now more than seven years together when I didn’t feel like a better man because of you; I feel your love in both moments of laughter and silence, joy and pain; Jacqui, despite originally being diagnosed with lymphoma just months after our wedding you have stood by me through the difficulties of coping with a potentially deadly illness, and even when the stress of life could have divided us, it brought us closer and closer together (I should say that through months 6 through 8 of her pregnancy Jacqui slept on a cot next to me in the hospital, never leaving my side); finally, everyday I gain great pleasure parenting our daughter with you and watching you mother Sophia with tenderness and love.