Myeloma On The High Plains: Living With Cancer
Looking down at the green grass is a good sign. So is the fact that I am writing this article. Both of these little “things.” and so many more, add up to my current status of living with cancer, as opposed to not living.
I am a male, 63 years old, who was diagnosed with multiple myeloma about 4.5 years ago. Prior to my diagnosis, I was having tremendous back aches and finally went to an orthopedist who suggested an MRI. On a cold Friday in January, upon the reading of the MRI results, I had my world turned upside down by the doctor, who told me I had cancer. Multiple myeloma, to be exact.
He told me that he had set up an appointment with an oncologist the following Monday to confirm my diagnosis. I was so naive that one of the first questions I asked him was “Does this mean that our (my wife's and my) planned trip to the Azores in March is a no-go?”
I cannot remember driving home. However, I do remember sitting in my truck in our driveway trying to get my hands around having cancer. I was blown away. Four and a half years later, I still am not sure that I can get my hands around having cancer. However, I now know that it is not necessary to “get it” regarding having or living with cancer.
Sitting in the driveway, I was scared. I just did not know what to expect or what would come next. I grew up in an age where having cancer, any kind of cancer, meant that one was going to die and die soon. I was so unaware of treatments, medications, advances in the field, etc. Cancer was not something that concerned me. Now it did, and I was scared. The price of ignorance was high in regards to worry and stress.
I had a stem cell transplant in August of 2015, survived, and since then have been on an active drug protocol that to this point has kept “my numbers” where my oncologist and I would like them to be. I have become quite familiar with names like Revlimid (lenalidomide) and dexamethasone. Daily pill taking is the new standard / routine of living. Getting my “port flushed” has nothing to do with plumbing.
Fear was and still is to a degree a large issue in my life. I was scared of dying, scared of being a burden on my loved ones, scared of how my “great old life” was going to be altered.
See, I loved my life the way it was. I did not want cancer. Initially, I was worried that I would not survive six months of induction therapy and then a stem cell transplant. I was so sad and tremendously disappointed that living with cancer was going to be my new norm, and that was only if I was lucky enough to live. I was crazy (and I still am to some degree).
Not that this is earth-shattering news, but living with a disease, as opposed to not living at all, is a gift. However, it is one that requires small steps, not large leaps. I have come to understand that the only way for me to survive is to take it one day at a time, one treatment at a time. In my professional life as a financial advisor, I tell clients that creating a plan for retirement is best done one step at a time. I usually ask clients the following question: “How do you eat an elephant?” Answer: “One bite at a time.”
Now I have to live that and apply that truism to cancer. Four and a half years later, I still struggle and get myself in trouble by putting way too many days, weeks, months, etc. together all at once. Living with cancer requires me to focus on the short term, not the long term. Small bites.
I also had to learn and am continuing to learn that fundamental truth in life: “We are not in control!” It was something I had always heard about but never really had to confront.
Yep, we are not in control! Oh, I get that I can make decisions about treatments; foods; and mental, spiritual, and physical exercises to make the journey more agreeable. However, the big picture is that none of us asked to have cancer.
I have a friend who is in Alcoholics Anonymous. I told him that I hated having cancer. He told me that I was giving it way too much power.
My friend asked me if I thought that he liked being an alcoholic. He said that when he gets up in the morning, one of the first things he does is acknowledge his disease, and then he asks himself the question, “Ok, now, what am I going to do with today?”
Brilliantly simple and very effective.
So I try to remember that the only “control” I have moving forward is in answering that question, “What am I going to do with today?” Answering that question each day first thing in the morning allows me to let go of many of the worries, anxieties, and stress that come with living with cancer.
Mark Pajak is a multiple myeloma patient and the newest columnist here at The Myeloma Beacon. His column will be published once a month.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Welcome to the Beacon. Thank you for the column. I’m sure many of us can relate. Now, what am I going to do with today?
Dear Mark,
Welcome to the world of Beacon columnists, and thank you for your first column. It was good to read about your experiences and your reactions to your diagnosis. It is scary, and I think that it’s honest and helpful to just say that. I feel the same way, hating the loss of control in my life and knowing that I have to concentrate on the day to day, trying not to think too far ahead.
I send you my very best wishes and look forward to hearing more about you and your life with myeloma.
Thanks, Mark, for the column about how you found you had myeloma, and how you try to manage the worries that come along with that. I look forward to reading more of your columns.
Excellent article and welcome to the Beacon! I enjoy reading everyone's articles. I, too, found my multiple myeloma through bone involvement, especially in my back, and an MRI revealed all sorts of tumors and I quickly learned I was not in control! However, I view each day as a gift and celebrate life as fully as possible. I pray you continue to do well. In December I will celebrate 12 years since diagnosis. So thankful!
I ask not only what am I going to do with today, I also ask that I don't screw it up. A sense of humor helps. JB
Good column!
Excellent article and it fully depicts this wild process. A great thing to ask, "What I'm going to do with today?"!
Hi Mark, and welcome to the Beacon. My husband has been on the myeloma journey just a little longer than you. However, your stories are very similar. I really felt your anguish at discovering that you had multiple myeloma. Our first 18 months after diagnosis are a blur as he went through induction therapy, radiation, and a stem cell transplant. He has been on maintenance therapy since January 2016 and it is keeping his myeloma in check. Like you, we take each day as it comes and try to live our lives to the fullest. We look forward to hearing more about you and hope that your myeloma stays under control.
Thanks for the column, Mark. The past month or so since my husband was diagnosed with active myeloma has seemed like that one moment of yours in the driveway contemplating a life that no longer has anything to hold on to for control. For this reason, I am for the first time talking to people I had not thought to talk to about fears of what is ahead. I find myself reading all the columns on this website to get a sense of what the road is like. But what I am finding is not a way to fix myeloma but company in thinking about it at all. Thanks for writing about your journey!
Thanks Mark. I am just three years in and your article really resonates with my experiences. One day at a time is a fantastic approach. Stay positive and live each day as well as you can. Hope to read more of your columns.
Welcome, welcome.
Hello Mark,
Thank you for your first column.
I was diagnosed in February of 2018, but had lived with MGUS and loads of labs for 4 years.
A couple of weeks ago, a Lyft driver felt compelled to tell me his mantra: "Every day I wake up in Seattle and the sun is shining, I know it's going to be a good day." I answered, "How about changing your mantra to : 'Every day I wake up, it's going to be a good day.'" Just a variation on your question to yourself.
Hello Mark and Welcome. I note that like me, you were diagnosed and started treatment when you were in your 50s. At my age, not being able to continue working was a big fear I had after my diagnosis. I am 67 some 10.5 years later and still am working full time (a desk job), and I plan on continuing until I am 70, God willing.
Hi Mark,
Welcome to the Beacon, where I find lots of kindred souls on the same journey as I am. Your story parallels mine. I had my stem cell transplant in 2016 and am still on maintenance drugs. Prior to that, I was in the early stages of MGUS and smoldering myeloma for a few years before my doctor suggested we collect my stem cells while I was relatively healthy. That was a good move.
I discovered my disease when I casually commented to my GP at my yearly physical that I seemed unusually short of breath as I walked or climbed small hills. I thought I had exercise induced asthma! Silly me! My blood tests led them to my early diagnosis. I also had my transplant while I was pretty healthy, so my recovery was speedy.
The change in my life style has made me sad, but like you, I focus on the fact that I’m still above ground and able to do a lot of things. Hiking and skiing and Zumba are pretty much off the table for me, but I find time to walk three or four or more miles daily.
I smiled when I saw what your friend said about having cancer and giving it too much power. I’m with him! I try not to dwell on the fact that I have this incurable disease. I continue to make plans and live my life! My mantra is: Every day about ground is a good day!
Hang in there and keep writing your column. I find reading the Beacon articles to be good therapy.
Great column as I can relate so much to your journey, thank you!
Mark, this is a well-put articulation of what it is like to be in your late 50's and have your plans for the future shattered in an afternoon. I can really relate to your driveway moment having been diagnosed with high-risk MGUS this August just after my 56th birthday. I knew something was going on with my frequent colds and shortness of breath after coming up the stairs, but I never expected anything so serious. I take to heart your words of wisdom as I sort out what it all means.
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