survivor – Page 2 – Lens on Myeloma

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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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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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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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.

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