My Myeloma Story

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.