Anniversary and decision point

Celebrating the three-year anniversary of my stem cell transplant brings new choices about treatments and the possible improvement in my quality of life.

Today, how­ever, I’m still enjoying a com­plete response and rel­a­tive­ly good health with remarkably few side effects. My perspective on the future also is much brighter, and three more years of good health doesn’t seem like a stretch anymore.

Much of my current success is due, I believe, to the aggressive main­te­nance treat­ment I have been receiving. This third anniversary is not only cause for celebration of 36 months of pro­gres­sion-free survival, but it also raises a de­ci­sion about how to proceed.

A quick review of my history lays the groundwork for the de­ci­sion I face this fall. I was diag­nosed in 2015 with “high-risk” multiple myeloma due to the presence of the del(17p) chromosomal ab­nor­mal­i­ty. I was initially treated with Velcade (bor­tez­o­mib), Revlimid (lena­lido­mide), and dexa­meth­a­sone, which proved ineffective. I moved on to Kyprolis (car­filz­o­mib), Pomalyst (poma­lido­mide), and dex (KPD), followed by an au­tol­o­gous stem cell trans­plant. At 60 days post-transplant, I had achieved a nearly com­plete response and had to decide whether and what main­te­nance ther­apy to undergo.

July 22 marked the third anniversary of my au­tol­o­gous (own) stem cell trans­plant. Honestly, although the treat­ment went well, when I was sent home, three-years in the future seemed like a very long time away. I wouldn’t have been surprised if a relapse had arrived before this day.

If I’ve learned one thing about multiple myeloma, it’s that it can be uniquely personal in the way it develops and affects a patient, but more so, how it will react to treat­ments. Maintenance ther­apy, it seems to me, can be even more of a gamble then initial treat­ments. If a patient responds well to initial treat­ment and a trans­plant, is there a reason to con­tinue treat­ment to main­tain that progress? This can be a tricky question, especially for standard-risk patients who did well after initial treat­ment. In a nutshell, all treat­ments come with risks. To undergo main­te­nance ther­apy, a patient must decide that the chance of achieving extended pro­gres­sion-free and possibly over­all survival outweighs those risks.

There is data suggesting that main­te­nance ther­apy for “high-risk” patients like me can extend time without relapse, so fol­low­ing my trans­plant, my doctors rec­om­mended an aggressive main­te­nance ther­apy of a half-dose of the pre­vi­ous KPD treat­ment. This de­ci­sion was based on research out of Baylor University that sup­ported a triplet of medications for three years for high-risk patients.

During the first ten months after my trans­plant, my lab results showed a barely measurable amount of M-protein. After that, over two years now, there has been no measurable amount of cancer detected in my blood tests. By all standards, this is a great result and con­sis­tent with the best out­comes reported in the Baylor study. While there is no way to know if my current con­di­tion is because of the main­te­nance treat­ment, given all that has occurred in the last three years, I believe the de­ci­sion to proceed with the aggressive main­te­nance ther­apy was correct.

Now that I’m ap­proach­ing that three-year mark, I must decide what’s next. It’s easy to think that if the dis­ease is being kept at bay and I’m not suffering many side effects, I shouldn’t change any­thing. Though my current results are all we could have hoped for, as I under­stand the research, there is little in­for­ma­tion about what benefits, if any, I might achieve by continuing this treat­ment beyond three years. There is, how­ever, an ever-growing risk that the toxicity of the treat­ments will eventually be more than my body can handle, and that may open the door for more serious side effects or sec­ond­ary cancers.

Since there is a lack of clear data about the clin­i­cal benefits of continuing this aggressive course of main­te­nance, I will decide based primarily on how the treat­ments impact my quality of life.

I’m convinced that Kyprolis is a myeloma-killing champion for me. Other than my trans­plant, it also has had the most sig­nif­i­cant impact on my quality of life. Kyprolis is admin­istered by in­fusion. As an initial treat­ment, it required trips to the clinic on two consecutive days three weeks on, one week off. As main­te­nance treat­ment, the trips are cut to one day a week, but still three on, one off. For me, that means a two-hour roundtrip drive and any­where from two to five hours at the clinic. Since starting Kyprolis in Jan­u­ary­ 2016, that has been a lot of time on the road and in the clinic. Since my appoint­ments are generally Friday or Saturday, it also means I can’t plan to travel or par­tic­i­pate in an activity on many weekends because I have treat­ment.

My wife and I cope with this schedule because we under­stand it is nec­es­sary and because my getting better has be­come one of our jobs. We are used to the inconvenience in our schedules and our lives, but it would mean everything to retake this time from the dis­ease.

Time, I have discovered, is more precious to me than any­thing else. Time with my family. Time with my grand­chil­dren. Time to take pictures and enjoy the world I live in. Time to work on the projects that are priorities to me at work. Time is finite with our without myeloma, and making use of the time doing what I want to do, instead of sitting in traffic or in a clinic bed, is the ultimate im­prove­ment to my quality of life.

Based on the ever-increasing risk of toxicity, the lack of compelling evi­dence I would im­prove my chances of long-term survival, and the thought of even a short-term return to a more nor­mal life, I have decided to drop the Kyprolis from my on-going treat­ment plan. On my doctor’s advice, I will con­tinue the oral medications of Pomalyst and the dreaded dexa­meth­a­sone. We will closely monitor my health and meet regularly with my specialist, ready to change course at the first sign of a relapse.

When I was first diag­nosed, I looked at treat­ment as a way to avoid dying. On this anniversary, I celebrate the past success and look at main­te­nance ther­apy as a way to keep living my life.

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 Photo Credit: (c) 2019 Mark Pouley

I celebrated my anniversary this year, as in the past, vaca­tioning at our eastern Washington lake retreat. As always, it was splendid. When we’re at the lake, I spend early mornings on my boat looking for scenery and wild­life to photograph. This year a bald eagle let me get unusually close, and it stayed and posed for many great photos.

The Pendulum Throws

“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.” So begins the Pearl Jam song Pendulum, and so goes life with multiple myeloma.

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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The haunting song “Pendulum” by Pearl Jam

 Photo Credit: (c) 2015 Mark Pouley

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

What’s Next?

“What are you going to do next?” It’s rare that a slogan printed on a hat makes me pause, but reading this quote in a gift shop at Disneyland made me think. Feeling so good today, I have to ask myself, What’s next?

“What are you going to do next?”

It’s rare that a slogan printed on a hat makes me pause, but reading this quote in a gift shop at Disneyland made me think.

My wife and I joined our oldest son and our three adorable grand­children for three days at the “happiest place on earth,” and it was amazing. Seeing this magical world again through the eyes of our grand­children was heart-warming beyond description. As a multiple myeloma patient four years past diag­nosis, the trip was even more special.

Feeling so happy, and healthy, it was appro­pri­ate to ask myself, “What are you going to do next?”

For the last few years, I’ve focused on treat­ments, side effects, and test results. Nearly all of my thoughts about the future involve calculations about life with myeloma, the odds of relapse, and what a relapse will look and feel like.

During this time, if I asked myself “What are you going to do next,” the answer was typically related to my next appoint­ment, my next lab test, my next medication, or what I’ll do when I relapse. In a very cynical way, my answer to the question often focused on what I’d do next trying not to die.

While I’ve never been able to forget about this disease, and I never will, I found joy and savored the time I spent with my family during those three glorious days in March. Most sig­nif­i­cantly, this hap­pened with­out me giving much thought to multiple myeloma, some­thing that has eluded me since my diag­nosis.

Instead of planning on what I intend to do next in my efforts to fight myeloma, my trip last month reminded me to put my energy into my plans for how I will con­tinue to live.

I owe Walt Disney a lot of credit for creating a place where this can happen, but I’d like to think our vaca­tion was just a reminder about the mindset I can employ in my continuing life as a cancer patient.

If my health remains unchanged, for at least the next seven months I will con­tinue on an aggressive treat­ment regi­men that in­cludes Kyprolis (car­filz­o­mib) infusions, along with a trip to the clinic, three times a month. I will remain fatigued, occasionally forgetful, and a not-so-delightful companion on dex days. After that, there’s a fair chance I’ll travel less often to the clinic and enjoy more freedom from treat­ments and side effects.

If my health changes, all bets are off, and I’ll start a new path to take control of the disease. This contingency is, how­ever, entirely speculative. There is no reason­able way to plan for it because I don’t know when it will happen or what form it will take. There is simply no way to guess what this will mean to my life and the plans I make going forward.

While it is im­por­tant to under­stand these contingencies and be ready to deal with them, I won’t let them dictate my answer to the question, “What are you going to do next?”

I just read April Nelson’s Beacon column for this month. As a 14-year survivor, April is, to use her words, an outlier. She has no good explanation for her longevity. Her conclusion is that this is just what myeloma looks like for her. I take her journey as a lesson that we don’t know what our future holds. We can only play the hand we are given.

The hand I cur­rently hold is a pretty good one. After my diag­nosis but before treat­ment, I was rel­a­tively healthy, with only minimal bone involvement as a result of the disease. Following my initial treat­ment, an au­tol­o­gous stem cell trans­plant, and aggressive main­te­nance ther­apy, the myeloma is cur­rently undetectable. The side effects from all the treat­ments have been rel­a­tively mild, and I am generally able to live the same life I did before diag­nosis.

So, what am I going to do next?

I have tickets for three concerts this year (in June, July, and September). The artists and venues are varied, but each is someone I’ve seen before and that I eagerly want to ex­peri­ence again.

“Moulin Rouge” is one of my daughter’s and my favorite movies, and it is opening as a live musical on Broadway in June. We are planning a trip to New York City this fall to take in the show and soak up the city.

My brother has a vaca­tion home in New Orleans, and though I’ve always wanted to visit The Big Easy, it has never happened. Seeing a new oppor­tu­ni­ty, we are hoping to join my brother and sister-in-law there sometime this year.

We have other places we would like to visit, but they may require passports, planning, and savings. While myeloma could change our ultimate actions, it will not alter our goals.

My wife and I have meaningful and specific conversations about poten­tial retirement. While we don’t ignore the natural “what-ifs” generated by myeloma, they do not drive the conversation. Like so many other people our age, we are looking at our finances and goals, and we’re making plans to be with each other and enjoy the time when we leave our full-time jobs.

Finally, I again con­sider my family. Whatever I “do next,” it will in­clude my grand­children, my children (who all are now adults), my wife, and my other family as often as possible. Last month’s trip to southern California reminded me how happy I can be just being with these wonderful people when we set aside our cares for a time and let ourselves be happy.

More of that; that is what I am going to do next.

Learning to be Forgetful

The treatments for multiple myeloma have resulted in memory loss and other cognitive issues, or “chemo brain”. Part of living with myeloma is dealing with this impairment.

It’s on the tip of my tongue. “I could remove and reinstall the … uh …” pointing at the spot where the wall and the floor meet, moving my hand side-to-side indicating the length of the wall. “The uh …,” pointing again. “Baseboard! I could remove and reinstall the baseboard to save money when the new carpet is installed.”

This is a rough transcript of a real conversation I had this summer when we were planning to redecorate a room in our house. It is an example of a phenomenon that’s become all too common for me since I started treat­ment for multiple myeloma. Word search­ing happens with such regu­larity at this point, I ex­pec­t it. While it is possible the lapses in my vocabulary are the natural result of my age, I think it is more likely that they are a side effect of my treat­ments for multiple myeloma and even the diag­nosis itself.

Cancer-related cog­ni­tive im­pair­ments, sometimes called “chemo brain,” are real. While the effects of the con­di­tion are often subjective, therefore making them dif­fi­cult to study, concentrated reviews of patient ex­peri­ences con­firm these im­pair­ments exist in cancer patients. A study reported in The Myeloma Beacon in 2013 suggests that about half of myeloma patients can suffer cog­ni­tive im­pair­ment as a result of treat­ment. The good news is that the limited number of avail­able studies also suggest cog­ni­tive im­pair­ments can im­prove over time when treat­ments are reduced. The bad news for so many of us myeloma patients is that today treat­ments may con­tinue indefinitely. While I have no proof, I sus­pect my issues will con­tinue as long as I am receiving treat­ment.

These studies also indicate that most cog­ni­tive im­pair­ments seem to manifest later during treat­ment as patients begin to “survive” their disease and reenter their prior lives. This was true for me. When I had finished the most intensive treat­ments and started to get back to a regular life as a myeloma “survivor” (back to work and engaging again in home life), I noticed my brain hadn’t come back with me.

A number of Beacon columnists have shared their own stories of suffering chemo brain and what they do to overcome or live with it. While there are many similarities to all the stories, it is clear that chemo brain affects all of us a little dif­fer­en­tly, and perhaps some patients not at all.

For me, I’ve noticed two changes I believe are cog­ni­tive im­pair­ments brought on by my myeloma diag­nosis and treat­ment. Those im­pair­ments manifest most often in my occasional “word search­ing” and less often in loss of recall.

Word search­ing is not like lacking a sufficient vocabulary to com­plete a sentence. I know that I know the word, I may have even known the word in the millisecond before I started the sentence. Word search­ing is losing the word the instant you need it to com­plete your thought. It is a frustrating feeling, particularly because I’m so aware that it is happening.

I haven’t kept close track, but it seems word search­ing happens more often, or more noticeably, on my triple dose treat­ment days when I receive Kyprolis (car­filz­o­mib), Pomalyst (poma­lido­mide), dexa­meth­a­sone (Decadron). I don’t think it is tied to any one drug, but more to the way my body, and my brain, are reacting. I’m also sig­nif­i­cantly more fatigued on these days, so that could be part of it as well. I also know that the word that escapes me is nearly always the subject of the sentence. Again, I don’t know if there is any sig­nif­i­cance to this, it is just a pattern I’ve noticed.

It is a bit tougher to describe what I’ve called a loss of recall. It’s possible my spouse, family, and those I work with think I’m ignoring them at times, or that I just wasn’t listening, but that isn’t true. It’s just that I sometimes forget the details of conversations I was part of just a day or week before. It’s harder to describe, but equally frustrating, and more likely to get me into trouble than my word search­ing.

There are times when I realize that I’ve had a conversation with someone about a particular subject, but that I don’t presently recall the details of the conversation we had. For instance, I’ve said to my spouse, “I know we discussed when we are supposed to be at x’s house, but I don’t remember what you said.” Similarly, “I think you might have told me before that I need to put something in the mail, but I just don’t remember if we’ve talked about it or what we decided.”

Unfortunately, these examples sound like an inattentive spouse with better things to do than listen. I can see how that might look, but from my perspective, it is more frustrating. At the moment of recall, I can actually picture, or at least vaguely remember, the context of the prior conversation. I know I was engaged in the conversation. I simply can’t recall the details of what was said.

I’ve read less in the literature about this type of im­pair­ment or its cause. Maybe it is wishful thinking on my part that I can escape the wrath of my loved ones by blaming my cancer. I can honestly say, how­ever, that I’ve noticed this problem much more frequently since my diag­nosis and treat­ment. Per­haps it is not drug induced and just that my mind is sometimes more distracted.

Because we notice these cog­ni­tive changes more, and they may arise when we are trying to per­form work or engage with family, we may become more self-conscience of the im­pair­ments and that itself can increase the stress and increase the severity of the im­pair­ment. We would be better off to realize this is part of what is happening to us and be prepared for it and not overreact (thus not giving more power to the im­pair­ment).

In any case, these issues do impact my life on a nearly daily basis and I want to learn to deal with them better.

Some experts suggest greater exercise helps im­prove fatigue, mood, quality of life, and therefore diminishes the incidence of chemo brain. This is yet another incentive for me to stick to my New Years’ resolution of exercising more.

There are clinics that offer cog­ni­tive rehabilitation. I think these pro­grams in­clude exercises and games to en­hance and overcome some of the chal­lenges. I haven’t looked into this, but I’ll make it a goal this year and report back.

For me, the key is knowing that cog­ni­tive im­pair­ment is happening and telling my family and my care­givers about it. Getting their input on when and what they are seeing, and how I could im­prove it, is crucial to me. If they know I’m work­ing on this, they can also tell if the efforts I’m taking are showing results.

I don’t think it is useful to keep it hidden, thinking it might just be me. It is common, it is predictable, and in many respects, it can be addressed.

As survivors, we must understand some of the odd facts of our new existence and learn to adapt. While I won’t say that we need to “embrace them,” we at least need to own them as part of who we are as myeloma survivors.

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 Photo Credit: (c) 2016 Mark Pouley

We ex­peri­enced our first (and only) winter storm in Western Washington this month, in­­clud­ing a rare blanket of snow. I warmed up by looking at summer lake landscapes.

I am Resolved

New Year’s resolution take on new meaning and importance as I live with multiple myeloma and the side effects of treatments.

It’s the beginning of a new year and time for resolutions. I’m not actually one to make New Year’s resolutions. However, I did make one back in 2014. At the time, my body told me I was drinking too much coffee, which I was doing mostly just to give me something to do while I worked in my office. I decided two cups a day was a good limit, and I’ve been able to stay with that (with a few exceptions). My resolve has paid off.

Apparently, a New Year’s commitment to exercise is both common and com­monly broken. We hear that gym memberships jump in January and drop quickly thereafter.

This year, as boring as it sounds, I join the crowds in wanting to exercise more. As was the case with my coffee limit, the motivation for this resolution is my health. This year, how­ever, I am focused in particular on my multiple myeloma, and being better prepared to fight the disease when I need to.

Before I was diag­nosed with multiple myeloma, while I knew I needed to take better care of my body, I wasn’t ever motivated to work hard to do it. I’ve been lucky that my weight was never a problem in my life, so weight control never motivated me to exercise. I’ve always worked a sedentary job, and I’ve never been very athletic, so I just didn’t notice my lack of fitness. I guess I was fortunate that in 50 odd years this lifestyle never bit me too hard.

When I was diag­nosed, I gained a much better understanding of my body and how important my general health was to fighting this disease. This is true for more reasons than I can list, and it may be a bit dif­­fer­en­t for each of us. One important thing myeloma patients have in com­mon is our need to deal with and recover from treat­ments.

It was clear to me from the beginning of my myeloma journey I was going to undergo a stem cell trans­plant. Fortunately, I had some time to prepare for it. I learned that the stronger and healthier I was, the better my chances would be of recovering from the trans­plant. For instance, I knew the medical team wanted me up and walking as much and as soon as possible post trans­plant. If I’m not fit enough to get out and walk before the trans­plant, how hard was it going to be after the trans­plant? At that early stage of my diag­nosis, my mind was open to hearing anything, and do anything, to get better. There were enough people telling me to get healthier, and I needed to feel like I was taking steps to get better, so I committed to exercising.

Realistically, there was no way I was going to radically change my habits. Instead, I needed to find simple ways to incorporate small amounts of exercise into my daily routine. For me, walking, biking, and swimming, in small but con­sis­tent doses, met this goal.

There is plenty of advice suggesting we only need to walk 30 minutes a day to im­prove our health. This is easy to say, but until I made it part of my routine, it was hard to do. Engaging a partner helps. When the weather allowed, my wife and I went to our local school and walked around the track. When that wasn’t possible, I walked a half hour on the treadmill that had been collecting dust in our family room.

My knees have always given me a little trouble (the problem is unrelated to my myeloma), so walking for exercise can be unpleasant, making it chal­leng­ing to maintain a walking routine.

Trying to help me find another “in home” exercise, my family bought me a recumbent exercise bike for my birthday. The recumbent position is good for my back and knees. Riding is good exercise. Since I’m able to watch videos while I work out, it was easy to make riding into a routine. I also bought a pedal exerciser for my office (picture a set of pedals that sits on the floor) that I can use while sitting at my desk reading. Peddling was a big addi­tion to my daily routine and contributor to my better health.

At the time of my diag­nosis, my wife and her sister had been going to water Zumba for a few months and they talked me into joining them. I learned that water exercise is amazingly low impact while being a great workout. In addi­tion, exercising to music, with my wife and sister-in-law, was just fun. At the end of 30 minutes moving in the pool, I was exhausted, but felt no discomfort.

Through resolve and repetition, I worked each of these small exercises into a routine so that each day I got at least 30 minutes of vigorous activity. By the time I went in for my trans­plant, I had sub­stan­tially im­proved my strength and stamina. I wasn’t going to be running a marathon, but I clearly im­proved my health and my ability to face the chal­lenges ahead. While I have no proof, I am convinced that im­prov­ing my con­di­tioning through exercise helped me get through the trans­plant much more easily.

So why the New Year’s resolution?

Because I’ve grown complacent since I’m doing so well after my trans­plant.

On the plus side of my recovery, I feel today nearly as well as I did pre-diagnosis. On the downside, I’ve let myself slip back into pre-diagnosis bad habits. The routine of exercise I developed to prepare for my trans­plant has been pushed aside for more time on the couch watching TV and playing on the computer. My gains in strength and stamina have also lapsed. No doubt, I could better handle the daily fatigue from treat­ment if I exercised 30 minutes a day instead of (or in addi­tion to) napping 30 minutes a day.

Looking back, I really just “let myself recover” from the trans­plant instead of “working on my recovery.” I am where I am today because of good medical care, good fortune, and time. I have contributed minimal effort to my own recovery.

Perhaps I’m being too hard on myself, but I know I let my exercise routine lapse. I also know I will regret this as time goes on if I don’t change. I’m not certain what the future holds, but all myeloma patients live with the prospect of relapse. I also live with the prospect of more chal­leng­ing treat­ments in my future. Instead of waiting for relapse and gearing up for another trans­plant, I must work every day to better address the side effects of my current treat­ment and be ready for any treat­ment or chal­lenge that comes my way tomorrow or the next day.

Today I am resolved to end my complacency, be thankful for the recovery I’ve achieved, work to maintain my health, and be ready to once again fight with all I have if and when the myeloma returns.

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 Photo Credit: (c) 2018 Mark Pouley

In December 2018, I traveled to Palm Springs for a work-related conference. While there, I visited the Joshua Tree National Park for the first time. It was an amazingly clear, 65-degree day, perfect for hiking in the Mojave / Colorado Desert. I walked a total of about 5 miles, taking in the unique and glorious landscape. I could walk many, many miles a day if the view was always as inspiring as Joshua Tree.

Memories are Made of This

The unexpected passing of my cousin has me thinking about life and death and the memories we leave behind when we’re no longer here.

Just before Thanksgiving, I received word that my cousin John passed away. His memorial was held the Saturday fol­low­ing the holiday. There isn’t anything that makes me think about life and death more than the passing of a friend or relative (except perhaps my cancer diag­nosis). The fact it hap­pened during a time when I was with nearly all of my family made it that much more sig­nif­i­cant.

I hadn’t seen John in about six years, and we spent no time together as adults. Still, the news of his death hit me hard. In part, it was the sudden and unexpected nature of his passing from a heart attack, but more so that our shared childhood adventures are so much of my past, and now he is gone.

It’s not a stretch to say that I grew up at John’s house. When my parents left town on occasion, I would stay with John and his sisters. When I wanted to have a fun weekend, I would ask my parents to let me go to John’s. My aunt and uncle were great substitute parents, and John had all the cool toys my parents wouldn’t let me have: motorcycles and BB guns. He lived on acreage in a rural setting, and we spent many hours exploring and playing on the open land and in the irrigation canals.

Thinking about John’s passing, I realize that John and those adventures are all part of my most memorable childhood stories, the kind you tell your own kids decades later when you want to share what Dad was like as a kid.

A couple of the stories I’ve shared many times with family and friends stand out.

Once when I was young, my parents took me to John’s to spend the weekend. They were never fans of motorcycles, but when they dropped me off, I was expressly instructed to stay off the devil machines. Of course, John and I rode his dirt bike that weekend. It wasn’t enough, though, to ride the motorcycles. John was going to teach me how to jump the bike out of the dry irrigation canals.

The idea is simple enough: drive down one side of the ditch and up the next, “catching air” as you escape the ditch. John did it like a pro.  His riding skills surpassed mine by a lot. On my first attempt, I rolled down into the ditch and throttled the bike up the other side. Unfortunately, I failed to maneuver the short distance between the canal and the barbed-wire fence running along the canal. My failure is chronicled to this day by the scar on my right cheek where 36 stitches closed the gash torn in my skin by the fence.

In one of the outbuildings at John’s, there were several animal traps hanging on the wall. John told me that they were his and that he used them to trap muskrats in the canals. From that moment, I wanted to trap muskrats. One winter weekend, we finally got the chance to set John’s traps along the canal. When we checked them later, we found a muskrat trapped by the leg, but still alive. John handed me the bat he’d been carrying, offering me the honor of the kill. The muskrat looked at me with sad muskrat eyes and I couldn’t do it. It’s really a wonder I’m not a vegetarian today, but I will never forget that moment.

These are my stories. At John’s memorial, friends, family, and co-workers shared story after story about John. It was a really special tribute to a great guy.

John’s memorial reminded me that we are our memories and the memories held by others.

John left us suddenly and without warning. I haven’t spent sig­nif­i­cant time with him in almost 40 years. Even so, he lives after his passing in my vivid memories and the many, many stories shared by others at his memorial.

When I look back on my childhood, who I was, and the things that influenced me, I remember those stories and so many more that live on in me all these years later. Those adventures shape who I am today.

My wife often says it is our job as parents to make memories for our kids. Taking them to Disneyland, sharing family traditions, showing them the world we live in, is all about helping them make memories. I know we’ve done a good job of this with our children, and now I’m work­ing on making memories with our grandchildren. I hope when they are my age they will smile when they think about their crazy Papa.

As long as we’ve been married, my wife and I have hosted Thanksgiving in our home. When we were in school, we invited friends who couldn’t get home to their families. Today, our entire family and many sig­nif­i­cant others join us for a day of fun and food that often spills over through the weekend. It’s been so many years that the traditions and stories of past Thanksgivings are etched in the everlasting memories of everyone. It is a highlight of our year, and a highlight of my life. Each year the traditions are the same, but each year is dif­­fer­en­t, and we build on the memories of the past.

There is a 100 per­cent chance I will leave this existence, re­gard­less of multiple myeloma. It is also a certainty that family and friends will remain here and go on without me. If I’m lucky, and I believe I’m very blessed, I will con­tinue to live in their memories.

My family, my children, my grandchildren will celebrate Thanksgiving after I’m gone. It is possible the location will change over time. The people able to attend may also change. Still, many of the traditions will con­tinue. The stories of our past holidays will be told with joy and laughter.

Each day it is our responsibility to keep the memories of those who have gone before us alive. It is our responsibility to imbue memories of ourselves in those we contact. John’s memorial service reminded me that we get to choose the nature of those memories.

We are our memories and the memories held by others.

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 Photo Credit: (c) 2010 Mark Pouley

An aesthetically pleasing landscape photo is good, but a really good image should tell a story. In some rare cases, a photo can also stir deep emotional feelings, at least for some of the people viewing it. For me and my family, this is such an image. This is the very first view of the Twin Lakes we see as we drive down the mountain road into the Inchelium area. This familiar glimpse of the water means our long trip is nearly done, and we are about to enjoy the pleasures of the lake, the outdoors, and the people.

Lies, Damned Lies and Statistics

Every cancer patient is bombarded with statistics about survival rates, and “high risk” patients get the short end of those statistics. Instead of giving those numbers too much power, we need to remember what’s really behind them and how they apply to an individual patient.

I was recently reminded of an important lesson about statistics that applies to multiple myeloma. Interestingly enough, I was reminded of the lesson sitting in a stadium full of soccer fans, of all places. While a reg­u­la­tion soccer match is 90 minutes long, the official time is kept by the referee and he or she can add a few minutes to every match to compensate for the time play was stopped for injuries or other reasons. In the 93rd minute of the last game of the regular season, the Seattle Sounders scored a goal that shattered statistics.

The regular season of Major League Soccer (MLS) starts in early March and ends in late October. Like many American sports, the regular season is followed by a playoff to declare the final champion. The Sounders won the championship in 2016 and played in the championship match, but lost, in 2017. The Sounders have ad­vanced to the playoffs all 10 years they’ve been in the league, but in 2018 it appeared this streak would come to an end.

When the 2018 season began, the team’s star forward suffered a season-ending injury in the first match. Clint Dempsey, arguably the greatest American soccer player ever, retired mid-season after barely getting on the pitch in 2018. Losses piled up early. Some close games were given away, some matches weren’t even close. It seemed the season was lost before it really got going.

There are several organizations that compile sports statistics that track soccer teams’ successes, and failures, game-to-game. The numbers are used to project a team’s likely finishing position. In June, about mid-season, the Sounders had the worst record of 23 teams and were given only a 1.67 per­cent chance of making the playoffs in 2018. From my vantage point, that number seemed generous. The team looked terrible.

Many loyal fans, even in my household, wrote off the season. All objective in­for­ma­tion before us suggested the team was going to finish the season outside of the playoffs. It wasn’t a matter of giving up hope; looking at all the facts, this seemed like the only reasonable conclusion.

In July, the Sounders started winning matches, and by the end of October, they turned in the best half-season of soccer in MLS history. They not only qualified for the playoffs, but with the goal scored in the dying minutes of the last game of the season, they finished with the fourth-best record in the league.

The Sounder’s playoff games begin on November 4 (likely before this column is published). The statisticians give the Sounders only a 9 per­cent chance of winning the championship. Given what I learned this year, I’ve decided to ignore the numbers and just enjoy the games.

As myeloma patients, we’ve become pretty familiar with statistics. There are numbers everywhere we look. Every treat­ment comes with a spread of numbers suggesting how many patients might respond to a given treat­ment, how likely the response will be com­plete and whether or not the treat­ment might, in comparison to other treat­ments, extend a patient’s pro­gres­sion-free and over­all survivals. Of course, we are all familiar with some of the grim statistics regarding the number of months or years a myeloma patient might ex­pec­t to live, re­gard­less of treat­ment. As I’ve discussed in other columns, I’m con­sidered a “high-risk” patient, and the statistics for the group of patients that share my chromosomal ab­nor­mal­ity are not very cheery.

Cancer patients are often warned against giving too much stock to statistics, and for good reason. The statistics we see are merely summaries of a collection of data from a set of patients within a given category. Even within the measured collection, some patients did better and some patients did worse than the final averages and medians. There are numerous factors that influence how relevant any given data might be to our own particular case. As a single example, when discussing the over­all survival of myeloma patients, one factor that can skew life ex­pec­tancy statistics is the vast number of treat­ments that have been introduced in the last 10 years.

I’m not questioning the accuracy or validity of statistics. Statistics are critically important to researchers and doctors that are making long-term decisions about caring for myeloma patients. Statistics are especially important to draw general conclusions about a set of data from a sample. The numbers we see today are encouraging for the future of today’s patients and those who follow us. There is a reason for hope for all patients, but that too is a generalization.

For individual patients, and for me in particular, how well a specific drug worked on average for a group of patients studied in a particular location during a window of time is far from a perfect prediction of how well I’ll respond to the drug. How long the average myeloma patient diag­nosed in 2010 survived does not tell me whether I’m likely to to watch the 2022 World Cup or not. How well I do in treat­ment, how long I will survive, is controlled by too many factors, knowable and not, to make any reliable predictions.

During the post-game press conference fol­low­ing the last match of the regular season, the Sounder’s coach was asked if, given where the team was in June, he honestly believed his team would make the 2018 playoffs. He gave a wry smile and quickly responded yes because he knew the team had it in them to turn the season around and beat the odds. The people forecasting the Sounder’s final position in the league weren’t wrong, they just didn’t account for the many individual factors that influenced the out­come of the season.

The survival numbers and treat­ment reviews aren’t wrong as they relate to the myeloma pop­u­la­tion over­all, but they are much less relevant to any single patient. There are just so many factors that skew the numbers one way or the other. In some areas, I’ve already surpassed the averages for “patients like me.” In other respects, I’ve still to reach some longer mile­stones.

From my perspective, the lesson of the Sounders’ 2018 season is that for each individual person, none of the numbers really matter. I will do everything in my control to stay as healthy as possible. My care team will apply all methods possible to keep me healthy. I will get exactly as much time as all the factors taken together will deliver to me. Each day I’m here, though, I will sit back and enjoy the game.

UPDATE (November 9, 2018) – Unfortunately, the Sounders were elim­i­nated from the playoffs on November 8 by their hated rivals, the Portland Timbers. Just as they had during the regular season, the Sounders played to the very end, including thirty minutes of overtime and penalty kicks to break a tie. Objective observers are calling it one of the greatest MLS playoff matches ever. The Sounders entered the match with long odds of ad­vanc­ing, and through multiple dramatic lead changes met the challenge and pushed the opportunity to ad­vance to its limit.

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 Photo Credit: (c) 2013 Mark Pouley

Centurylink Field, home to the Seattle Sounders FC (and the Seattle Seahawks) is one of the most beautiful pitches in the MLS. On many days, like this one in 2014, the view is magical. During the last 10 years I’ve found refuge from a busy life in the stands, but since my diag­nosis, attending games has taken on a very special meaning and given me great joy.

Treading Water

Maintenance therapy for multiple myeloma can feel a bit like treading water. My disease is in check, but I’m just paddling about to keep my head above water. But sometimes treading water is a good thing.

As I enter my third year of main­te­nance ther­apy after experiencing very little change in my health the past couple years, I sometimes feel as though I’m just “treading water.”

While it’s often con­sidered derogatory to say that someone is treading water, being able to swim in that way is actually a very important safety skill. A swimmer isn’t going to make any forward progress treading water, but they’re going to keep their head above water (i.e., not drown) long enough to catch their breath so they can con­tinue a longer swim. Tread­ing water also allows a person who gets stranded too far from shore to survive on their own while waiting for help to arrive.

When I was diag­nosed with multiple myeloma, the purpose of initial treat­ment, and the measures of its success, were obvious. The same holds for the stem cell trans­plant that followed my induction ther­apy. In those instances, the energy and resources expended on treat­ment, and the toll the treat­ments took on my body, moved me forward by sig­nif­i­cantly reducing the number cancerous cells in my body.

The purpose and measures of success for main­te­nance ther­apy aren’t so obvious.

This is true not only for patients like me, who have no medical training. Maintenance also is a subject of discussion even among myeloma specialists. While main­te­nance is generally recommended by doctors in the United States, it remains unclear what its actual benefit is in terms of a patient’s over­all survival. This allows doctors and patients to question the value and necessity of recommending main­te­nance ther­apy for all myeloma patients.

Just as there are many types of initial treat­ment avail­able for multiple myeloma, there are a variety of options when tailoring main­te­nance ther­a­y to individual patient needs. It is truly remarkable that multiple myeloma patients have so many treat­ment choices avail­able. It does, however, make it more difficult to decide what course of action to take because it often seems whatever path we choose may foreclose other options.

Whether to proceed with main­te­nance, and what type of main­te­nance to pursue, are particularly difficult decisions because the benefits seem so hard to quantify, and there is a natural desire to be free of treat­ment, even for a short period. If I simply think of main­te­nance as holding the status quo, it can seem like a waste of energy. However, when I understand the true importance of “treading water,” the case for main­te­nance ther­apy seems to me to be more compelling.

The main argument in favor of main­te­nance ther­apy is that studies consistently find it extends the remission patients ex­peri­ence while they are undergoing main­te­nance. The treat­ment reduces any residual disease that exists in patients and delays the time until the residual disease begins to multiply, causing relapse.

The costs of the treat­ment, aside from the financial expense, are the side effects and other possible harm caused by the long-term toxicity of the treat­ment. For me, the price includes the hours of driving to and from the infusion clinic three weeks per month; taking a handful of pills daily; and suffering the constant fatigue and occasional cognitive lapses. There also are real health risks asso­ci­ated with long-term main­te­nance, such as secondary cancers or heart damage, which can decrease rather than increase over­all survival.

All this simply to stay in place.

I’m treading water with no movement forward. Or so it seems. If main­te­nance treat­ment doesn’t extend my over­all survival, is there enough reason to endure the possible toxicity of treat­ment?

The problem, both from the scientific perspective and the patient’s perspective, is that it is so difficult to know with any certainty if the treat­ment is extending an individual patient’s survival. While some studies sup­port this conclusion as a general proposition, as an individual it isn’t possible to know if the medications are effective or not.

If I don’t relapse, is it because I’m undergoing main­te­nance treat­ments? Might I also avoid relapse if I stop treat­ment? If I take a “drug holiday,” could I avoid relapse and the fatigue, neu­rop­athy, and other side effects of the medications?

There is no way to answer these questions, so I have to decide if it is worth the risk of relapse to stop treat­ments.

Given the relatively mild side effects I’m experiencing and the fact that my high-risk myeloma remains at bay, I’ve decided, with the sup­port of my myeloma specialist, that the benefits of main­te­nance outweigh the cost.

I am hopeful that a relapse is very far in the future. Realistically, though, I must prepare for the possibility that it is just around the next bend. I need to be fully prepared for that and the toll it will take on me to deal with it. Like the swimmer treading water, right now I’m just resting, keeping myself healthy enough to be ready for another tough swim in the future.

I’m convinced that my current main­te­nance treat­ment gives me my best chance at sustaining this pro­gres­sion-free period of my life. That is important for many obvious reasons, but given my relatively young age and my commitments to my career and family, I want to spend this time with my head above water.

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Photo Credit: (c) 2014 Mark Pouley

A duck calmly sits on a log at the crest of Niagara Falls as the roaring water rushes by. This photo reminds me how important it is to be content holding on in one place while everything around me moves by quickly.

Time Marches On

“How did it get so late so soon? It’s night before it’s afternoon. December is here before it’s June. My goodness how the time has flewn. How did it get so late so soon?” – Dr. Seuss reminds us how time flies, and the second anniversary of my stem cell transplant gives me a chance to look at the time that has passed and the time ahead.

“How did it get so late so soon? It’s night before it’s afternoon. December is here before it’s June. My goodness how the time has flewn. How did it get so late so soon?” 

– Dr. Seuss

Two years. Where has the time gone?

I just celebrated the second anniversary of my au­tol­o­gous stem cell trans­plant. At times, it seems like only yesterday. At other times, I can hardly remember it and have to wonder if it happened at all.

It is human nature to mark the anniversary of events, big and small. It provides us an opportunity to reflect on where we are and where we’ve been. We get to take stock of our accomplishments over time.

Many times, as is the case of the anniversary of my trans­plant, we get to reflect on an event that shaped our lives and the highlights of the year that passed.

Naturally, the first thing I review when I take stock of the past year is my health and where I stand as a multiple myeloma patient.

Immediately fol­low­ing my trans­plant, my M-spike was a tiny fraction of where it started, and for the last 12 months, there has been no detectable mono­clonal protein in my blood samples. I remain in a full and com­plete response, and I’m generally very healthy. By all measures, I’m in better health today than I was a year ago.

As a “high-risk” myeloma patient, I feel great reaching 24 months post-transplant in such great con­di­tion. Each day, each month, that I remain healthy feels like a great accomplishment.

Of course, the real value in keeping my good health is having the opportunity to ex­peri­ence the joy of my family.

My wife and I celebrated our 36th wedding anniversary at our favorite fancy restaurant. The next day, we attended an explosive live Pearl Jam “Home Show” in Seattle with one of our sons and his girl­friend. We remain young at heart but enjoy our occasional senior-citizen discounts.

My eldest son welcomed his third child, my third grandchild, into the world this year. She is the sweetest, most adorable girl (since her elder sister, of course). I can’t imagine missing her smile and snuggles as I try to coax her to sleep.

Before my first grandchild arrived, which was also pre-diagnosis, I wasn’t sure I was ready (or old enough) to be a grand­parent. Today seeing them grow gives me my greatest joy.

My daughter com­pleted her masters’ studies and was awarded her degree in December. She is also a fantastic roommate. She’s gone through the trials, tribulations, and excitement of remodeling and improving our new shared home. She is raising goats, and she adopted a couple barn cats to keep the mice population in check. It’s been an amazingly fun year in our new home.

The city of Bellingham promoted son number three to a position rewarding his hard work. He has also committed his services to his fellow employees as a union steward during a tough negotiation year.

Salmon are a critical resource in the Pacific Northwest, especially for the native tribes of Puget Sound and the coastal waters. Son number two, a salmon biologist, led a local tribe’s efforts to preserve and enhance salmon runs in their traditional waters.

Obviously, I’m proud of my children and their accomplishments. I adore my three precious grand­children. I know I share this trait with all parents and grand­parents. For me, it highlights the great value of being given another year of successful treat­ments.

As children, we couldn’t wait for the next event. Be it a birthday, Christmas, or summer vacation, the next exciting event was always in the future.

The special events might change as we get older, or as our health changes, but we don’t ever shed our anticipation of future events.

When I was a child, the time before an anticipated event seemed to crawl. I thought Christmas, or my birthday, would never arrive.

As an adult, this is no longer true, and as a myeloma patient, I view this with a new perspective.

I’m certainly excited about reaching this second birthday active and healthy, but I’m shocked at how quickly it arrived. The cynical gremlin in the back of my head reminds me that not only do the happy future events come and go quickly, so will the less pleasant events. That is the double-edged sword of time I suppose.

Of course, this dilemma is true for all humans. We anxiously await the next big thing, ignoring how the passage of time is bringing us closer to a grand finale.

As cancer patients, we certainly may be more aware of this, but that could be a blessing too. If we’re lucky, we gain a greater appreciation of all the good in our lives. Knowing our time may be limited, we seek opportunities to enjoy that time.

I know in the past I might have said no to getting up and doing something that seemed less enjoyable than what I was doing but gave me a chance to share time with family or friends. While I still don’t always say yes, knowing the finite chances ahead to do these things gives me a new measure to make my decision.

I eagerly await my third birthday next July. I will, as I’ve done today, reflect on the many joys that take place in the next 12 months. It is now my responsibility to fill that time with as many happy memories as possible.

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Photo Credit: (c) 2017 Mark Pouley

I spent my second birthday back at the Twin Lakes and had a first-of-its-kind opportunity to watch five or six juvenile bald eagles share a feast of fish at lakeside. Here is a photo of one of the eagles leaving his perch in the tree to go down to the buffet.

How did all this become normal?

We endure so much a myeloma patients. Before my diagnosis it would all be so strange and intrusive. Today it all seems so normal and acceptable. How did that happen?

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”

Friends, family and strangers that learn I’m living with cancer all say it. “You look great.” While it is meant as a compliment and encouragement, I have very mixed feelings about being told how “great” I look.

“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.

An Unexpected Foe

I’m lucky that when I was diagnosed with multiple myeloma, my employer provided exceptional health insurance coverage. I’ve had only small out-of-pocket costs associated with very expensive life-saving treatments. Unfortunately, in recent days coverage for continued treatments was threatened and that has caused new stress and worries.

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.

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