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.