My Myeloma Story

Recapturing my Passion

The shock of my diagnosis caused a lot of anxiety and I didn’t always respond in the best way. In particular, I lost my passion for photography. I hope to take that back from this horrid disease.

I live in the pacific northwest of the US and one of my life’s passions is photography. You can see my work, read about my activities as a photographer, and pick up a tip or two at my professional site

I started seriously shooting photographs in 2009. By 2011 I was printing the best of my work and showing it regularly in regional art shows, first for judged prizes and soon offering them for commercial sale. I developed my presence on the internet and actively sought representation in galleries in the Pacific Northwest. Granted, in that time I’ve only earned slightly more than my expenses, but I don’t consider profitability the only measure of success. While I’m not paying a lot of bills with professional photography, I have transitioned beyond a mere hobby.

Unfortunately, my myeloma diagnosis in 2015 significantly cut into my ability to promote my photography. Between the time lost to appointments and the precautions necessary to avoid infections, particularly as I got further into treatment and closer to my transplant, I was unable to interact with the public in the way I need to promote my art. Sadly, I also allowed myeloma to interfere with the act of creating my art, and there is no excuse for that.

My portfolio primarily includes nature and landscape photography. There are many reasons for this, but the simplest may be that I enjoy getting out by myself, often before others are out of bed, to take in the beauty of nature. We regularly spend vacations and long weekends at the Twin Lakes in northeast Washington and that is where I draw much of my inspiration. When I’m out shooting alone I’m able to absorb nature, examine the light, and concentrate on interesting compositions. My full attention is on my environment and the photograph I’m going to create. I don’t think about work or other issues that may be vying for my attention in the real world. Simply put, photography is very therapeutic.

Understanding this makes it all the more ironic that following my diagnosis I found it incredibly difficult to get out and shoot photographs on a consistent basis. I explained in my first column that the shock of the diagnosis, the fear and anxiety that I felt, paralyzed me and separated me from doing the things I loved. Photography was one of those things. I knew intellectually this was happening, my doctors and family encouraged me to reengage with my work, but I didn’t. 

Up until my stem cell transplant there was no physical disability preventing me from getting out as often as I had before my diagnosis but I just didn’t feel motivated.  I really can’t explain why I let myeloma deprive me from enjoying a great passion. I can only speak for myself, but I’m guessing other patients have found it difficult to engage in activities they enjoyed before myeloma impacted their lives. I think it may be natural to let such a dramatic change in one’s life deprive you of otherwise joyful things.  

Unfortunately, recovery from my recent stem cell transplant still prevents me from having the kind of close contact with the public that promotion of my art requires, but I can return to producing my art. In fact, I have all the incentives I need. It is important for me to get out and walk and get some light exercise. Fresh air (clean air) is good for me. Quiet contemplation of nature is, as I said, therapeutic and helps me be more mindful of the beauty of each day I’ve been given. Maintaining good mental health and staying happy is one of my best tools to fight this disease. I have every reason in the world to regain my passion.

It’s not enough for me to say it, I must do it. 

This cancer has taken so much from us already, we can’t let it deprive us of everything that makes us happy. There is so much in life I no longer control, but I have not lost control of my photography. I am determined to recapture my passion.

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Photo Credit: © 2016 Mark Pouley.

I took this photo of the sunrise breaking through a tree in May 2016 during the break between my induction therapy and my stem cell transplant. It was one of the few early mornings that I got up early and out to shoot photos like I have in the past. The image is a great reminder to me why I love doing this and how rewarding it can be.

My Diagnosis

A routine physical led to the shocking news that I have an incurable cancer, multiple myeloma. The news sent me down a very dark hole that I struggled to get out of. Time, knowledge, and counseling helped me escape the depression and move forward.

In March of 2015 I was your basic healthy 53 year-old man, but I figured it was time for a check up. I made an appointment with my doctor and he ran all the usual tests. I left that appointment with a clean bill of health and a recommendation to exercise more. Four days later my doctor called me.  You know it isn’t good if your doctor calls. I remember his words distinctly.  “Your lab tests show monoclonal gammopathy, which may be early multiple myeloma.” None of those words meant a thing to me, until he said it was a type of cancer and he referred me to a hematologist. I couldn’t have been more stunned.   

That phone call kicked off a series of increasingly frightening and confusing doctor’s visits. On my first visit I learned the increased proteins could be nothing, but I may have something called MGUS. The doctor explained the condition and softened the blow by explaining the small likelihood of MGUS becoming myeloma. A few tests later and another visit to the doctor I was told I may have smoldering myeloma, which meant closer monitoring. I had progressed from, “don’t worry about it” to “don’t worry about it now.” Then I was referred to a myeloma specialist. 

Luckily I live near Seattle, Washington where some of the world’s best myeloma specialists practice. I made an appointment, my records were transferred and I waited an agonizing two weeks.

My myeloma specialist was very direct about my test results and diagnosis. I definitely had multiple myeloma. There was nothing smoldering about it. He then asked, “Did your other doctor discuss your cytogenics with you?” The blank stare on my face told him I didn’t have a clue what cytogenics even meant. He explained I had an abnormality called “del17” which meant that I was a “high risk” patient.

 Instead of watching and waiting, my previous treatment plan, he believed I’d begin treatment before the end of 2015. He also explained the science of myeloma in a way I hadn’t heard before. Not that relapse may happen, but that it most assuredly will happen. Then he spoke the words that seared into my brain. With my cytogenics my average survival was six to seven years. Did my doctor really just tell me I might not see my 60th birthday? 

In less than a month I went from being totally healthy to learning I had a deadly and incurable form of cancer. The kicker is that I still didn’t feel sick at all.

Honestly, at this point I was a wreck. My wife was by my side for all the appointments and we shared the news with my adult children, but that was it. I couldn’t even tell my closest family and there was no way I was going to tell colleagues at work. 

The secret knowledge ate at me, and I felt something I can only describe as shame. I was scared. Scared of dying and scared of living with the disease. I mourned the future I thought I’d lost. I felt jealous of people I thought would outlive me. While I did my best to stay productive at work, hiding my fear in the presence of colleagues, in the privacy of my office I often succumbed to paralyzing anxiety. I let thoughts of what might happen in the future deprive me of the present and separate me from the people I cared about.

I knew I couldn’t continue on this path. I sought help from my doctor and started seeing a counselor. My immediate family was my greatest support and I slowly started telling more family and close friends. When my colleagues learned about my condition they demonstrated great compassion. Instead of becoming “cancer guy” as I’d feared, I discovered a wealth of kindness and comfort. In fact, I found that my closest friends and family aided my recovery from fear and anxiety by refusing to treat me any differently than before.  

When I was first diagnosed the Internet was a very scary source of information so I avoided it. My specialist pointed me to The Myeloma Beacon and I found an informative, reasoned and compassionate resource. 

I’ll never forget the shock I felt leaving my specialist’s office after that first visit, but over time I’ve grown to have complete faith in him and the team. He is not locked into the statistics and he has great hope for my future. I learned about the amazing advances in myeloma treatment that I believe will keep me alive and kicking well beyond the previously stated expiration date.

With my willingness to share my experience with those close to me, and after learning more about the science of myeloma, I was able to accept the reality I’ve been handed. The fear hasn’t completely subsided, but the impact I let the fear have on my life has.

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Photo Credit: 2014 Mark Pouley.

This photograph of the North Fork of the Stillaguamish River was taken on March 21, 2014. 

Less than 24 hours after I took the photo, a massive landslide destroyed a neighborhood a mile upstream from the location, killing 43 people in its path. The location was severely flooded, and the river flow was forever altered. 

Almost exactly one year later, I received the phone call that set off my own personal landslide and forever altered my own personal path.