A Northwest Lens On Myeloma: Accepting Reality
I’m Mark Pouley, and I’m excited to join the Myeloma Beacon as a regular columnist.
I was diagnosed with multiple myeloma in the spring of 2015. I’ve experienced a lot in the last year, learned a lot, and changed a lot. Along the way, The Beacon became an important part of my mental and physical recovery.
I’m writing this column to pay it forward by sharing my myeloma journey. The one lesson I’ve learned since my diagnosis that stands above them all is that myeloma is part of my life, and accepting that reality is the key to continuing to live a full and happy life. I have so much to say, but I’ve decided to begin my columns the way my myeloma journey began; with my diagnosis.
In March of 2015, I was your basic healthy 53-year-old man. Nevertheless, I figured it was time for a checkup. 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 that because I had no other obvious symptoms, the increased protein levels in the preliminary lab results could be nothing, or they could be a sign of something called monoclonal gammopathy of undetermined significance (MGUS). The doctor explained the condition and softened the blow by explaining the small likelihood of MGUS becoming multiple myeloma.
After a few tests, including a bone marrow biopsy that indicated a significant level of abnormal plasma cells, the doctor told me I may have smoldering myeloma. Closer monitoring would be necessary. I had progressed from, “don’t worry about it” to “don’t worry about it now.”
An MRI was scheduled and I was referred to a myeloma specialist. Luckily, I live near Seattle, 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.
The MRI revealed “a focal myelomatous deposit (plasmacytoma).” 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 cytogenetics with you?” The blank stare on my face told him I didn’t have a clue what cytogenetics even meant. He explained I had an abnormality called “del(17p),” which meant that I was a “high-risk” patient.
Instead of watching and waiting, my previous treatment plan, he believed I should begin treatment before the end of 2015. He also explained the science of multiple myeloma in a way I hadn’t heard before. Not that relapse might happen, but that it most assuredly would happen.
Then he spoke the words that seared into my brain. With my cytogenetics, 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 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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The title of my column, “A Northwest Lens on Myeloma” deserves a short explanation. The “Northwest” in the title refers to where I live: the Pacific Northwest of the United States. The “Lens” in the title refers to one of my life’s passions: photography.
I hope to include with each of my columns a photograph that I’ve taken that reflects – in one way or another – the topic of the column.
This month’s photograph (below) is of the North Fork of the Stillaguamish River. The photo 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.
Photo copyright © 2014 Mark Pouley.
Mark Pouley 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 for The Myeloma Beacon, please contact the Beacon team at .
Mark,
Your journey sounds similar to mine, but move back in time 8 years.
I'll forgo all the details except for my treatment & current.
I also had a plasmacytoma, and my IgG level was 3600 when diagnosed at 49 years old. Other than these test results, I was the picture of health and had just completed running 4 marathons in little over 2 years.
We first treated with Revlimid and dex. Then I has 25 radiation treatments. I then collected stem cells and had a stem cell transplant. The diagnosis and all treatment was completed in 2008.
I am happy to report that all quarterly test results have been negative and I just completed 8 years from my transplant. That is 96 months, soon to be 100 months!!
I was also very afraid and thought 3-5 years was it. I now do blood tests every 6 months and hope to stay in remission for at least another 8 years. B then hopefully they can offer "cure".
Hi Mark,
Thanks for your article. The first year is very rough for a lot of us. I think I had more grief than anxiety, but having years of meditation training really helped with the fear and helped keep me present in just getting through the treatments of that first year – full-on treatment just a few weeks after diagnosis, then a stem-cell transplant, then the long transplant recovery.
It's now a year after transplant and I feel like I've gotten my life back. For me, maintenance therapy is quite tolerable, and I am cautiously optimistic that I will have a reasonable quality of life for many years, and when I need treatment again, I'll be able to get through it.
It's good you're in Seattle and have access to myeloma specialists. Those folks are hard to come by.
RT
Mark,
You and I have the 17(p) deletion abnormality in common. I was diagnosed first with MGUS, but moved quickly to smoldering and then to active myeloma. I did 4 rounds of Revlimid, Velcade, and dex and then had an autologous stem cell transplant in February 2015. Because of the 17p deletion, I started Velcade maintenance at my 100 day (post transplant) checkup and I've remained on Velcade every 14 days since. I return to my treatment center in a few weeks to see how I'm doing. I'm glad you've found the Beacon to be helpful to you. I was glad I found it too.
Welcome to the Beacon as a columnist, Mark. I think that you will find being a columnist to be an interesting writing assignment every month or so. That has been the case for me. I liked your photo of the Stillaguamish River, although the story behind the picture is sad. I think I remember reading about the landslide in the news. The picture looks a lot like it is taken in the Canadian Rockies to me! And good luck with your health!
Mark,
Welcome to the Beacon! Your diagnosis was certainly a difficult and rapid transition: it must have been rough, given that you still felt so well. At least I knew that I was sick with something, although I had no idea what. Also, like you, when I was told it was multiple myeloma, I had no idea what that was! Some fun, eh?
Hello, Mark.
The shock of the diagnosis is rough, for sure. I had no idea I had multiple myeloma as I was feeling great and went to my family physician for my annual wellness check. I felt pretty numb myself in August 2013 after getting the diagnosis, but as you said, we don't have to let the impact of the fear of this disease control us. I'm now on Velcade maintenance every 14 days (after Revlimid, Velcade, and dexamethasone treatment in the beginning, and a stem cell transplant in February 2014). Thankful for the good in my life.
I really like your idea of including a photograph with your column, and the one you chose is especially meaningful for you and for me, too.
Thank you all for the nice comments to my first column for The Beacon. You've confirmed my thought that there is no good way to get the news and we all tend to handle and move beyond that initial shock one way or another.
Trevor & Nancy: Your writing helped inspire me to want to share my story. I'm happy to join such a great group of writers.
Cheryl: Getting the news of the 17p deletion was a little "kick him while he's down" experience. It still is at times.
Jim: Congratulations on your years of remission. Hearing so many people racing past the "average" gives all patients great hope.
Radient Tiger: It is definitely grief as well as anxiety. It was explained to me that some of what I felt was in fact grief for the things I felt were lost with the diagnosis. While I've just started maintenance, I'm tolerating it well like you, and I hope that lasts for a long time.
Sylvia: Photography for me is part of having a "good life" as you say. I'm glad you like the idea of including photos.
Mark,
Welcome to writing for The Beacon. I'm sure you will find it as fulfilling and in a certain sense, therapeutic, as I have over the last 2+ years. I look forward to reading your columns and seeing your photographs every month.
Mark, Thank you for a well written article and the accompanying photograph. Yes, they both contain a story of how life never remains the same.
My doctor has many times told me, "Those statistics refer to the average patient. Your age gives you a definite advantage, and you are anything but an average patient." You will learn more about yourself and your body's resources as you finish your initial chemotherapy and the stem cell transplant process.
During my initial chemotherapy, my blood counts were always at or just barely below normal levels for all cells. Because of my age and my body's resources, I was released from the hospital following the transplant on day 10, if I remember it right. The doctors were nervous and did not want to let me go, but the blood tests had met all the requirements – significantly surpassed them, in fact. I do not have high-risk cytogenetics. I remain on maintenance chemo after 5.5 years.
You are fortunate to have a specialist within easy reach. You have access to many more treatment options than were available even 5 years ago. Look for your positives and dwell on that for a while. Work on pushing the fear out.
Mark,
I can totally relate to your diagnosis story. I was diagnosed at age 53 with stage 1 (April 2014) and was happy that they had caught it early and I felt that I would have a great prognosis. But then the FISH results came in and the doctor explained 17p deletion and gave me 2-4 years. I was never so depressed in my life. I had a 16-year old and an 18-year old in college. Yes, the Internet reading just made it worse. The good thing is my high-risk disease enabled me to enroll in the Empliciti plus Revlimid, Velcade, and dexamethasone trial, and I'm still in remission. There is a subset of patients with 17p that do well, I hear, so I am bound and determined to be one and you can be, too!
Thank you for sharing your journey. I look forward to hear more about it.
Hi Mark and welcome to the Beacon. I was practically breathless as I read your column as I believe many of us have experienced similar introductions to multiple myeloma. It sounds like you are in a good place, both physically and mentally. I am really glad that you are seeing a myeloma specialist since that seems to be key in gaining access to the latest treatments as well as opportunities for clinical trials.
We will look forward to your column in the future and seeing what spectacular photo you will be sharing with us each month.
Hi Mark,
Welcome and thank you for your article! It's always helpful – and encouraging – to hear another mmer's story. While I do not share your cytogenetics, I too know the shock of being healthy one day and suddenly being told I have cancer – and an incurable one to boot. For me, that was 4 3/4 years, a stem cell transplant, and a lot of maintenance treatment ago. As my oncologist told me at the beginning of this journey, no one can predict your exit date. He also said his goal was to make sure something else got me before the myeloma does. So far, so good. I wish the same for you. Once you get over the shock, I think it gets a little easier over time to come to terms with your new situation. Best wishes!
Hi Mark,
What a great first column! It’s really relatable because your feelings as you learned of your diagnosis and struggled to understand it closely mirror my feelings, and probably those of many others here:
I look forward to reading more of your experiences in the future.
Karen
I am 2 months in. Shock because I know many people with multiple myeloma. I have a mass behind my ribs (plasmacytoma) and multiple myeloma. I am very calm because of my meditation practice and knowing that my treatment is the best in the best hands (many myeloma specialists in north Florida where I live). Namaste.
Steve: Thank you for your welcome and your great columns.
Marcia: I think being younger and healthier than the average patient is a bonus for sure. Knowing anything about statistics makes it much easier to ignore the numbers and move forward with life.
Janet: ... that goes double for those of us with "high risk" abnormalities. I simply refuse to let it drive me to give up. Sure, I have to think about it when we discuss being more "aggressive" in maintenance, but I don't give the statistics anymore credence.
Patty, Linda and Karen: When I got past the initial shock and was able to talk openly with other cancer survivors, I was surprised to learn how common our feelings and experiences are.
Beverly: It is good to hear you've found specialists so soon and that you are finding peace well before many of us were able. I'm sure you've heard/read it a lot now, but there is so much good work happening with multiple myeloma that there is great reason to be hopeful for our futures.
In many ways you are "lucky". My wife was diagnosed late as she was being treated for back pain. She ended up with 2 collapsed vertebrae and 2 compression fractures and lost several inches of height. Catching it early in your case hopefully will allow you more healthy years. The last several years have also seen several new treatments become available and much progress in being made. My wife also has the 17p deletion and the 1q addition, so she is also high risk. She is 2.5 years from diagnosis and her M-spike is starting to creep back up again, so we will be looking at changing treatment options.
Hi Mark, welcome! I am grateful to the head of my hospital here in Rome for the way he disclosed that I had myeloma.
I had experienced episodes of intense bone pain and I was so weak that I could not walk straight. Differently from the orthopedist and another doctor I had seen, who dismissed the situation and talked about pain from my scoliosis, a young doctor I knew suspected there could be something serious and suggested I do electrophoresis and call him with the results. When he heard the numbers, he said I should go to a hospital, quicko.
At the hospital they did more tests and, even before all the results were ready, the hematologist had a good idea about what was wrong. He came to see me. I was in the garden. He said
“I have reason to believe that you have a type of cancer called multiple myeloma. There is no need for you to stay in the hospital, but we would like to see you on Monday to start the treatment. You see these people? They come for their treatment, then there are periods in which they don’t need to, then they come again.”
He made it sound like it was going to be a nuisance, but nothing too alarming. Then he added, “life expectancy is about 10 years”. Gulp! And yet, how kind of him to lie! Ten years sounds like you can cope, 5 or 6 sounds much scarier!
The doctors and the wonderful nurses are making my journey more tolerable. Nurse A. greets me in English, as she would like to learn the language, but only knows a few phrases and cannot find the time to study it. Male nurse S. makes me laugh or smile all the time! When I relapsed I entered the Day Hospital on a wheel chair, and pointing to the room with the three beds reserved for weak patients, he would say “Your suite is ready Annamaria!” One time I was given albumin, and he told me I was about to receive Fairy, the name of a dish soap, because it makes bubbles! And nurse G is so thoughtful! During my induction I was confused and did not know exactly what had hit me. One day she welcomed me saying “Happy Birthday!” It brought tears to my eyes.
Sometimes I bring them the delicious cakes that I make. I give a chunk to my doctor too, with the hope of convincing him that stopping the cortisone after one year is a good idea. But no, he is incorruptible!
Dear Mark,
Welcome. What a wonderful description of those first few months. We all have similar and yet different experiences. I really loved the landslide which sometimes describes the experience of having a chronic, incurable disease.
I have deletion P17 and also translocation 4:14. I already have outlived the original prognosis of 5 years. I am at 6, and 5 years from a stem cell transplant. Although I have relapsed, I am being treated successfully.
What strikes me is how many different faces there are to this disease. What else is hopeful, is each time I have gotten to a tough place, someone creates a new treatment. Finally, the community of Myeloma Beacon readers and writers have been one of my important support elements.
Sorry you had to join this special club, but the future is hopeful for us.
Maureen
Thank you Maureen. I've been reading your recent columns with great interest. I didn't realize you were also "high risk".
Annamarie: Not that I have many care providers to compare, but I truly think how we interact with our doctors and nurses is a key to our ability to cope. My team is great and helped me get, and stay on, a pretty even keel with this disease.
Dear Mark,
My husband was diagnosed with multiple myeloma in April of this year. We , too, live in the Seattle area, so I followed your stem cell transplant postings in the forum closely, as my husband will be getting one within a few months also at the Seattle Cancer Care Alliance.
I wish I could say my husband was feeling great at diagnosis. However, he was having lots of bone pain for months without an accurate diagnosis. It wasn't until he got pneumonia and sepsis that he was finally diagnosed with multiple myeloma, including two plasmacytomas. He was told he had translocation 4:14. Our insurance would not cover both Velcade and Revlimid, so he enrolled in a clinical trial where he was able to get Revlimid, Velcade, and dexamethasone (RVD). Months later we were told he also has deletion 13p and 1 q addition. It's been a real roller coaster.
It is such a lot to take in, but reading about how well many of you on the Myeloma Beacon are doing is very encouraging. My husband will start his 5th cycle of RVD tomorrow and is responding very well. I thought I might lose him to the pneumonia initially, but he's doing great now.
Keep writing Mark. It's very helpful to follow your journey.
Judy
Judy: I wish you and your husband the best with his treatments. It is a lot to process with all of the available treatments and the different variants and risks associated with the disease. It is a real shame when insurance interferes with treatment, but it is great that he qualified for a trial.