Author: Mark Pouley

Can’t know what’s high, ’til you been down so low. 

The future’s bright, lit up with nowhere to go.

To and fro the pendulum throws.

We are here and then we go, my shadow left me long ago. 

Understand what we don’t know.

This might pass, this might last, this may grow. 

Easy come easy go, easy left me a long time ago.

– Pearl Jam “Pendulum”

Not only do I like this tune and highly rec­om­mend listening to it, but I also find the song’s content very appli­­cable to multiple myeloma.

The physical and emotional effects of multiple myeloma are not linear. There isn’t one starting point that directly moves to a finish point. Life with multiple myeloma is a pendulum, not an arrow. To and fro the pendulum throws.

With some diseases, a person feels sick, displays evident symp­toms, is treated, and recovers. For me, like many myeloma patients, I wasn’t sick, and I didn’t have any evident symp­toms of the disease. It was accidentally discovered, I was treated, which made me ill, and I im­proved. Even so, I never returned to my pre-diagnosis self. Others come to their diag­nosis very ill with many symp­toms, receive treat­ment, and im­prove.

Whatever our end state is fol­low­ing treat­ments, it isn’t static.

For most of us, myeloma will return, the pendulum throws, and we go through the back and forth of illness, treat­ment, and im­prove­ment. Sometimes multiple times. Even during times of remission, our health may move to and fro.

It can be discouraging to feel your health im­prove only to see it decline again. However, that is often the reality of living with this disease. It can be confusing and discouraging if you ex­pec­t a straight line be­tween diag­nosis, treat­ment, and re­cov­ery.

Emotionally, I was at my lowest the first few months after diag­nosis. The anxiety I felt was sometimes debilitating and often cut me off from the people and things I love the most. This extreme low, how­ever, taught me to appreciate and recog­nize the highs that followed.

Possibly my highest point in the last four years was our recent family trip to Disneyland. However, there have been many other high points since my diag­nosis that I appreciated more because of the low place I had come from. Can’t know what’s high, ‘til you’ve been down so low.

Within weeks of experiencing this joyful time, I had bouts of sadness and anxiety, mourning the possible loss of time with my grand­chil­dren, wife, and family. While I intellectually under­stand these feelings, and I’m fairly good at letting them pass, they emerge nonetheless, sometimes unexpectedly and deeply.

I’ve never returned to the lowest point I felt after diag­nosis, but I know it can hap­pen again with a relapse or future treat­ment failure. Certainly, I swing back to sadness and depression with some frequency, even as my physical health con­tinues to move in a pos­i­tive direction. The highs may not always be as good as before, and the lows are not as bad, but like a pendulum, to and fro, the feelings change.

After my diag­nosis, I recog­nized how low I had fallen, and I sought professional counseling. I have friends and family to turn to, but having someone to whom I can say any­thing was im­por­tant. I didn’t have to con­sider whether sharing my feelings would scare him, make him sad, or make him judge me. Those con­sid­er­a­tions are always present when I talk to friends and family. It helped immensely, and I use the lessons I learned to help me past moments of anxiety that visit me now and then.

My counselor retired in August 2018 and, because I was feeling well, I didn’t look for a new counselor to con­tinue my sessions. Since that time, how­ever, I’ve realized how much I appreciated talking to him, even when I was in good spirits, and how it kept me stable. I realize now the importance of those conversations, and I’ve found a new counselor to help me main­tain my bal­ance.

Living with multiple myeloma isn’t easy. Understanding myeloma can chal­lenge the experts; it’s even more mysterious to non-medically trained patients. The variety of treat­ments avail­able give us many options, but it also makes the de­ci­sions dif­fi­cult. Enduring the changes in our health and emotions is tiring. Easy left me a long time ago.

The one truth about multiple myeloma is that we don’t know exactly what our future holds. We have ideas, good and bad, but what do we know for sure?

My doctors can prepare me for what may hap­pen in the years ahead, but there is no certainty in any prediction. This might pass, this might last, this may grow.

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 Photo Credit: (c) 2015 Mark Pouley

“The futures bright, lit up with no where to go.”

As I lie here in a clinic bed, watching the nurse put on her gown and gloves to prepare my infusion of Kyprolis (car­filz­o­mib), I wonder how this all became “normal.”

I remember the first time I felt like a medical patient on this journey. It was in March 2016 when I went in for the first of what would be three (so far) bone marrow biopsies. I distinctly remember how strange it felt to be shown into a treat­ment room, given an immodest medical gown, and be poked and prodded in preparation for the main event, a biopsy. At that point, my diag­nosis was still up in the air, and I wondered if that was what my future looked like.

Of course, the fact I was undergoing a biopsy raised my anxiety, but just having to undergo an un­familiar medical procedure was unsettling. Up to this point, I had rarely needed more than routine visits to doctors’ and dentists’ offices.

By my calculations, I’ve had myeloma treat­ment infusions nearly 103 times before today. I’ve had three bone marrow biopsies. I underwent an au­tol­o­gous stem cell trans­plant and all the testing and daily check-ins that went with it. With such a high frequency of doing the same activity for over two years, it would be impossible not to feel it had become part of my regular daily living. Repetition has turned the extraordinary into routine.

I have also gradually accepted that I am a cancer patient. While the procedures themselves keep me grounded in this fact, being around and communicating with other patients helps me understand even more what this means.

The first time I was sitting in the lobby of the cancer center lab, waiting for a blood draw, I noticed many people obviously at different stages of their battles with cancer. Many of the patients looked very ill to me. Frankly, at that time my anxiety was very high, and this waiting area was a frightening and uncomfortable place. I even tried to schedule my blood draws at a local clinic, so I could avoid the cancer center’s waiting room. My doctor preferred getting lab results from a known lab, and I kept returning to this same waiting area. Now I’ve been in this room hundreds of times as well.

Over time I became more comfortable sitting with my fellow patients. I stopped paying much attention to their outward signs of illness and appreciated that we were all there for similar reasons. I feel like I owe an apology to the patients whose outward appearance scared me when I first started treat­ment.

Prior to my diag­nosis, my seasonal allergy pills were the only medication I took on a regular basis. Today I take 10 pills a day, not in­clud­ing the five dexa­meth­a­sone tablets I take three times a month. Now I con­sider myself a medica­tion veteran, able to quickly provide a list of medications to anyone who asks (i.e., all nurses and medical professionals any­where). I know what I take and when I’m supposed to take it. It’s routine.

I ex­pec­t like most myeloma patients I ex­peri­enced significant anxiety and depression on the news of my diag­nosis. At times I found the stress debilitating. Passage of time alone probably would have reduced my anxiety, but I didn’t wait to find out. I im­medi­ately sought counseling with a mental health professional.

Taking this step was probably both the hardest and easiest thing for me to do as I entered this new existence. I knew that I needed to talk to a pro­fessional, but it was hard to admit I was in this position. I’d spent the last half-century taking care of myself, but now I needed help.

Talking to my counselor helped me understand that none of this new situation I found myself in is normal and it never will be. I’ve heard many other patients describe this stage of the disease as their “new normal.” I’ve used this same language on these very pages. While I understand the sentiment, I know this really isn’t normal. I have incurable cancer that impacts me every day of my life. It changes the way I look at the future, how I work, and how I inter­act with everyone I know. That is not a normal way to live, but it is my con­di­tion as a myeloma patient, and it likely won’t ever change.

I could fight it and suffer the mental pain of resistance, or I can accept it and learn to cope and adapt.

Accepting my life as a multiple myeloma patient doesn’t make it normal, but it does make it bearable. It also doesn’t mean that I agree with the situation, but I know I can’t change it.

I am still upset that I have incurable cancer, and I am frightened that it may take me away from my family and friends well before I had ex­pec­ted and hoped. My frequent treat­ment infusions, my daily pill intake, the inescapable fatigue, and minor side effects of treat­ment constantly remind me of my con­di­tion. Over time these things have become routine and normal to me.

I don’t control the pain, physical or mental, that being a myeloma patient causes in my life, but I do control the suffering that pain causes me. When I accept the situation as it is, I reduce the suffering and better enjoy the time I have with my family, my grandkids, and my friends.

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Photo credit: (c) 2018 Mark Pouley

The North Cascades Highway closes each winter and opens each spring when the snow has melted sufficiently to allow transit. Early spring crossings are greeted by the sight of marvelously full water­falls cutting through the forest. While the paths have been cut and are the same year-to-year, each season brings a new and relentless flow of water the forest has no power to resist.

“You look great,” isn’t normally a compliment or greeting that causes the receiver pause. For me, however, it creates mixed feelings and those mixed feelings can change depending on the person and the situation when the greeting is offered.

I realize how I react to what is said to me is my issue, not the speakers’.  Often, they really mean to say that I look “normal” and unharmed by my cancer and treatments. They are witnessing no outwardly changes in my appearance or behavior, which they take to mean the threat of the disease is passed, even if the word “cure” never comes up. They are expressing happiness for me.

I too am very happy that my current treatments are working and that I’m able to work and engage in most of my daily activities. I’m happy that people who see me regularly think that I “look great,” but sometimes I wish they knew the reality of multiple myeloma. I wish they understood the subconscious, daily struggles we patients endure knowing this is an incurable cancer.

What these people likely don’t know is that multiple myeloma is always present, even if at a given moment lab results suggest the disease is dormant.  As patients, we are always aware of the threat of relapse and we are likely experiencing side effects of treatment, compromised immunity, and other life-long impacts. Some patients suffer even more significant issues like required dialysis, disability from bone fractures, or severe neuropathy. 

My friends are being polite and, thankfully in my case, honest. They know I have a serious illness. They know I was away being treated for a significant time, and now I’m back and I look as well as I did before.  There aren’t any obvious signs that I’m dealing with cancer. I don’t expect them to withhold their compliment.  I also believe it is inappropriate for me to regularly update them on the actual progress of my treatments or the subtle challenges I’m dealing with daily. (Not to mention I would become the person everyone would avoid since those conversations become tedious if that’s what happens every time you see me.) 

Still, it feels strange to have people who are close to me believe the threat has passed and that I must keep much of the truth to myself and politely accept the compliment.

As I was writing this column and thinking about this issue, I had the opportunity to be among several family and work colleagues who I don’t see on a regular basis.  In fact, it had been many months since I had seen any of them. Many of these people told me on multiple occasions, “You look great,” and I realized I had a different reaction this time.

Instead of feeling like they might be dismissing the disease as something that had passed, I felt they were acknowledging how well I’ve recovered from the disease. Perhaps they had an expectation that I would have lost weight, or my hair, or I’d look sickly, or there would be some other objective signs of illness.   In this context, I felt my friends may have been surprised, or at least relieved, that I look well in spite of the multiple myeloma.

I honestly don’t know what the underlying meaning of these speakers’ statements was, but my own reaction was different than when I hear the same words from people I see every day.

The people I see infrequently have some knowledge of the seriousness of the disease. I’ve probably shared with them some of my treatment plans, especially when I left work all together for nearly a whole summer to undergo an autologous stem cell transplant. The risks and difficulty of that type of procedure are known, and sometimes even overblown by people not very familiar with the treatment.

When there are large gaps of time as I am moving through significant phases of treatment and later see these remote family and colleagues, there is time for them to imagine I am “stuck” at that serious phase of treatment and not moving forward.

In reality, with each challenge, I successfully move through rough points only to emerge at the end with the multiple myeloma posing a lesser immediate threat and my body and life substantially back to where they were pre-diagnosis. Honestly, the biggest lingering effect of my multiple myeloma today is the mental challenges that ebb and flow constantly as I contemplate my future. 

When friends and colleges see me only after the big challenges have gone by, when I’m stronger and able to function nearly as well as I did pre-diagnosis, their compliments act as huge reminders to me of what I’ve accomplished.

It’s easy, maybe natural, for patients to feel shocked at diagnosis to hear the very general and dire prognosis of multiple myeloma; to be told the odds of success we might encounter with the many treatments available to us; to learn about some of the serious side effects or non-correctable damage to our body we might suffer over time. But as soon as a first treatment works, and the cancer numbers start to recede, we are able to push some of the negative thoughts to the background. We can begin to enjoy feeling healthier, to believe we can move forward. We can begin to hope the future is a little more indefinite than it seemed during those first meetings with our doctors.

When friends and colleges who only see me after large gaps of treatment say “you look great,” they’re expressing relief of seeing me healthy. However, it should also remind me that I have worked hard, my doctors have made their best recommendations, and I weathered some tough times.  While there will be more challenges ahead, I’ve successfully maneuvered those in the past and I will again.

When the people I see every day say, “you look great,” they’re actually relieving me from one of my greatest fears in sharing my diagnosis. I didn’t want to become “cancer guy” with people making special accommodations or worse, whispering behind my back. The fact that we don’t really talk about my cancer and ongoing treatments and instead they say, “you look great” and move to the most pressing project of the day is fantastic.  I’m just Mark, “normal guy,” and we have a deadline to meet.

By the way, I do feel great.

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 Photo Credit: (c) 2018 Mark Pouley

The nearly 100 year old Yoshino Cherry blossoms on the campus of the University of Washington are a sure sign that spring has arrived in the Pacific Northwest. I recently had the opportunity to walk the quad with my camera and focus entirely on the beauty of the trees and nature. It is so important to pause and appreciate what I’ve accomplished and the life I’ve been given following all the hard work and treatments.

Recently I spent a lot of time fighting a new enemy in my myeloma battle: a treatment denial by my insurance company. 

This hasn’t been an issue for me up to this point. The treatments I had received were obviously very expensive, but they were all covered and, thanks to my employer’s generosity, I have very low premiums and a very low out-of-pocket cap.  

I am very aware of the stress that my family and I could experience if I didn’t have such good insurance. Fortunately, we’ve been able to avoid any significant anxiety on that front, but that all changed recently.

Following my stem cell transplant, my doctor prescribed an aggressive three-drug maintenance regimen of Kyprolis (carfilzomib), Pomalyst (pomalidomide), and dexamethasone (KPD). We agreed that I would be on the regimen for up to three years. 

For the first three months of KPD, the treatment was approved by my insurance, and the claims were paid, but then my employer changed plan administrators.  For almost a year, the claims for my continued maintenance treatments remained pending. I was receiving treatment, but the claims were not being paid. Late in 2017, the treatments were deemed “not medically necessary,” and the claims were denied.

The denial was made by a reviewing agent relying on the National Comprehensive Cancer Network (NCCN) guidelines.  As I understood it, the decision was for two reasons. 

First, the NCCN guidelines do not support the use of combination therapy (two or more myeloma treatments) for maintenance. While combination therapy is widely accepted as initial treatment for multiple myeloma, it is not a conventional approach for maintenance therapy.  

Second, the NCCN guidelines do not list Kyprolis as an approved maintenance therapy.

This denial was shocking and frightening. The KPD regimen had pushed my myeloma disease markers to unmeasurable levels for many months. I was feeling great and looking forward to a bright future. I couldn’t understand how this decision was made after a year of treatment, and I couldn’t imagine what my future held.

The appeal process began immediately. My appeal included a letter from my doctor outlining my current treatment and the success I had achieved with it. I also wrote a letter outlining my confusion about the decision and my understanding of my treatment needs.

My doctor noted that I was a high-risk patient and that in his opinion conventional treatments are insufficient and aggressive maintenance gives me the greatest hope of survival. The letter went on to explain that my current treatment is based substantially on a study published several years ago that showed that Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone (RVD) maintenance therapy yielded impressive survival outcomes in high-risk myeloma patients. (For more information on the study, see this related Beacon news article). 

My appeal was denied.

It is a bit tougher to understand the basis of this denial, but there was a statement that there were no peer-reviewed articles supporting the use of Kyprolis in a combination regimen for maintenance therapy. My doctor hypothesized that the insurer’s reviewing doctor, while acknowledging studies supporting the use of RVD maintenance, did not consider the equivalency of maintenance with KPD.

I requested a second appeal.

My doctor revised his letter, this time emphasizing the need for combination maintenance, the fact that I didn’t respond to initial treatment with RVD, and the equivalency, or even superiority, of KPD over RVD.  We also included graphs showing the history of my treatment and my significant response to the KPD regimen.

By this point, I had missed a full cycle of treatment, and some of my lab results hinted that the disease was taking advantage of this open door. I wrote another letter, pointing out my new lab results, and citing a review article in which several myeloma specialists describe how they treat high-risk multiple myeloma patient. In that article, the authors share their opinion that “in no other patient population in myeloma is the achievement and then maintenance of CR [complete response] more important.”  

  Perhaps it was my doctor’s revised explanation of my treatment, or concern that denial of treatment might trigger a relapse, but the second appeal was granted and the claims for KPD were approved.

When I first learned my maintenance treatments were suspended, I was overwhelmed. I was getting better. I felt healthy. I was beating the statistics. My doctor had given me the bad news about my high-risk cytogenetics, but then gave me hope by prescribing a treatment regimen that seemed to have a good chance of overcoming the risk. Having that treatment denied felt like my hope of survival had been stolen. I didn’t realize how much stress I felt while the appeals were pending until I was told the treatments would resume. A giant weight was lifted from my shoulders.  It almost seems funny that my wife and I celebrated the news that I could resume cancer treatment.

Persistence and a vigorous defense of my appeals by my doctors and myself returned my hope, at least for now.  Knowing about my disease and my treatment allowed me to take an active role in the appeal process. While it took two tries, my doctors and I were finally able to present the information in a manner that convinced the insurance administrator that my treatments were not only “medically necessary,” but may well be saving my life. With lessons learned that I hope never to use again, I’m moving forward, letting my doctors battle the disease, and focusing my attention on living.

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 Photo Credit: (c) 2014 Mark Pouley

It is tulip time again in the Skagit Valley. I got up very early one year to arrive at the tulip fields before sunrise. I was rewarded with many great photos, but this is one of my all-time favorites. It is a great reminder of the beauty of the dawn of every day, whether we see it or not.