My Myeloma Story

Giving Thanks

The first holiday season after my stem cell transplant offered me many reasons to be thankful, and many people to share my gratitude with.

We are in the holiday season and I recently enjoyed our annual prompt to be thankful for all the joys in our life. As a multiple myeloma patient, it’s a good reminder for me to appreciate all the people that help me fight this disease.

I discovered with my diagnosis that it’s easy to become self-centered. What is happening to my body? What treatments do I need? When are my ap­point­ments? How does my health impact my schedule and obligations? For the most part, I think this is understandable, natural, and unavoidable. Even before multiple myeloma entered my life, I sometimes forgot to con­sider how my words and deeds affected others, and sometimes I forgot the simple act of saying “Thank you.” Now that I owe so many so much, I hope I can correct this oversight.

I’ve described how shocking my multiple myeloma diagnosis was to me. I honestly don’t know how my wife, family, and close friends felt when they heard the news. Did I ever really consider their feelings as I proc­essed my own? How difficult was it for them to keep their emotions in check for fear of upsetting me?  I don’t think I completely considered how hard it was for them when anxiety and depression overwhelmed me and disconnected me from my work and my family. I know I wasn’t always there for them to be the husband, father, and colleague that I should have been.

Almost immediately after my diagnosis, many of my responsibilities shifted to my wife and family. Because I couldn’t lift anything and I had to avoid exposure to everything that might cause an infection, I could no longer perform so many chores that were once ordinary. One by one, my family had to pick up my slack. Individually the tasks were minor, but cumulatively, our lives changed. The restrictions only grew over time.

Before and after my autologous stem cell transplant, the work load for my wife grew exponentially. She cleaned every inch of our living space, washed linens, and sanitized our bathroom and kitchen daily. She quickly learned nursing skills, flushing my central line, changing my dressings, and offering me a cold cloth when the drugs and my gastrointestinal system didn’t see eye-to-eye. Above all else, she was there for me always. I know this wasn’t an easy task.

I often felt guilty not helping more, and I tried to do what I could to chip in, but I fear it was too little to show how much I appreciated what was being done for me.

To my wife and children, I say “Thank you” for your hard work, support, and boundless love.

I have a great relationship with my brothers. It is marked by endless joking and laughter. When I told them I had multiple myeloma, they offered me strength and humor, sometimes dark, and it was always welcome. My brother and sister-in-law opened their home to me for a peaceful respite during my recovery from my trans­plant. My siblings are always reminding me I’m loved and part of a great family.

To my brothers, I say “Thank you” for a lifetime of smiles through thick and thin.

When I told work colleagues that I was ill, and that I would miss all of the summer, they understood. They stepped up and made sure that my work, and the people I serve, would not be left in the lurch. Many of them took on extra responsibility to cover for me, often sacrificing their own time or compensation to make sure I could give my full concentration to my recovery.

To my colleagues, I say “Thank you” for giving of yourselves so freely to continue our work.

I’m lucky to live near one of the nation’s leading cancer treatment centers. I have a better chance of beating this horrible disease because I have a gifted medical team working for me. They clearly possess great knowl­edge and experience that will help me. They also have great compassion, understanding the difficulty my family and I face fighting this cancer. During my visits, after we’ve discussed lab results and treatment op­tions, we talk about life. We chat about what we are doing at home, what makes us happy, and the ques­tions we have about the future. We joke, we laugh, and we remember there is life outside the clinic walls.

To my medical team, I say “Thank you” for treating all of my conditions, physical and mental, and re­mem­ber­ing the humanity of your patients.

The Internet is remarkable. We literally have access to all knowledge of mankind at our fingertips. Of course, that isn’t always good, because a great deal of the information is inaccurate, hurtful, and wrong. I had never heard of multiple myeloma before my diagnosis, and turning to the Internet for answers was often more harm­ful than helpful. Then I discovered The Myeloma Beacon. Here I found accurate information about what was happening to me, the science of the disease, what treatments were available, and a realistic reason to be hopeful about my future. In the Beacon’s forums I found caring, polite, and informed participants whose only interest was to help fellow patients, caregivers, and family.

To the editors of The Myeloma Beacon, my fellow columnists, and the many participants in the Beacon’s forums, I say “Thank you” for providing hope and support to this community.

I will never be thankful this wicked disease invaded my body, but I am grateful to be reminded of the many compassionate, strong, and loving people in my life.

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Photo Credit: © 2014 Mark Pouley.

I love the Thanksgiving holiday and I love the fall. This month’s photo is from my wife’s and my favorite lake. The photo was taken in the fall as the green turns wonderful shades of red and yellow.

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.