A deeper fear

© Mark Pouley

In 2015 I thought my cancer diagnosis would be the scariest thing that would happen the rest of my life, and then came 2020.

I’ve been working from home since March 10, 2020. I haven’t been able to add to this blog since shortly after being ordered to stay home by my doctor, my governor and, my employer. It isn’t that I didn’t have time, or didn’t have thoughts to share, I just found it difficult to translate my feelings into words. It isn’t any easier today, but I’m compelled to try.

As I sit here this morning I’m watching pictures of my city and my country burning. The tally of souls lost to Covid-19 moves past 100,000 with no clear end in sight. The divisions in our communities grow into chasms that may never heal. I am heartbroken and I am scared.

This blog is about my journey with multiple myeloma. It has never been political, even if discussing the U.S. healthcare system sometimes touches on politics. I still don’t intend to be political, but what is happening is so profound, I can’t write about my cancer without acknowledging the world in which I’m trying to survive.

When I was diagnosed with cancer I was scared. First I grieved for myself, thinking about the years I might lose and the things I might miss. I was also sad for my family and loved ones, for leaving them without my support. Those feelings were personal as the world around me kept going. Part of the challenge of survivng with cancer is learning to function in the “normal” world while my existence is threatened. In the last few months, while my disease reached healthy stability, the world around me unraveled. Today I fear for us all.

In my last column I wrote about the need for everyone to understand the threat of infection to those of us in high-risk categories. I was hopeful that people would learn we’re all in this together and those of use with underlying health threats depend on the otherwise healthy population to keep us safe. Sadly, since writing that column I’ve witnessed acts of unbelievable selfishness and ignorance. The death toll from this virus is far beyond what it likely could have been if only we were united in our efforts to defeat it.

As spring moves to summer our leaderships’ focus turns to putting people back to work to get commerce flowing even though all reasonable evidence suggests we are far from through the threat of this pandemic. A lesson I learned after my diagnosis is that no matter how well I respond to treatment I will never return to my pre-diagnosis life. Too many of our population fail to understand the threat of this virus has changed our lives forever. We are not going back to pre-covid lives. We can’t wish away Covid-19 any better than I can wish away my cancer.

As the length of our quarantine stretched into months the news was dominated by images of armed, mostly white, protestors occupying capital buildings demanding states to “reopen”. What we didn’t see were police meeting these heavily armed and agitated protestors with tear gas and rubber bullets. Instead, they were allowed to carry their weapons into the halls of legislation to scream their demands.

The pandemic laid bare the divides in our country. People of color were carrying the burden of keeping our essential services operating and paying the price with their lives in disproportionate numbers. Even though the health threat isn’t over, many in power have calculated this cost of moving the economy forward is acceptable.

In my sadness watching this modern plague ravage our country I was stunned by images of black men murdered in broad daylight by vigilantes and people sworn to protect us. Unfortunately, our history is bloody with these killings, but those murders, in this time, led to protests and violence in the streets across the nation.

People are in the streets demanding justice for all people of color. The crowds are large and diverse and the message is familiar. These crowds, unlike those we saw earlier in the month, are being met by militarized police, tear gas, and rubber bullets. People in leadership, ostensibly condemning the murders are demanding swift retribution for the unruly protests.

I don’t condone violence by anyone, but the response to the two groups of protestors couldn’t be starker or more disturbing. We can only hope the convergence of events will open eyes and hearts.

With or without myeloma, I’m approaching the end of my time on this planet. My generation squandered its chance to make this a better world. I fear what we’ve left for my children and grandchildren.

While today I feel overwhelmed with sadness, I can’t count the number of times in the last three months I’ve been brought to tears witnessing stories of human strength and love. We’ve seen kindness and heroics from people of every color and background. Will the inherent goodness of people someday overcome the systemic evils?

Perhaps there is hope. There must still be hope.

An Unexpected Surprise

I experienced an unexpected emotional response when I learned I was going to cut back the treatment regimen I’d been on for nearly four years.


It is difficult to describe how surprised I am. I’ve thought about this day a lot. I’ve written about it here more than once. I was disappointed when I thought it wasn’t going to happen. Still, I didn’t expect the deep emotional feeling I experienced as I walked out of the treatment bay for the last time.

Let me back up a minute.

Following my autologous stem cell transplant (ASCT) in 2016, I began an aggressive three-drug maintenance regimen of Kyprolis, Pomalyst, and Dex (KPD).  Three years later, in September 2019, I met with my doctors expecting we would reduce the treatment. I was disappointed when he recommended continuing the treatment, but with possibly lower doses.  

Not only did I feel disappointed, irrationally perhaps, I also felt defeated. This was a low spot for me emotionally. I wondered if I’d ever feel I’d advanced in my treatment or ever get a break from the constant treatment.

Before making the final decision on the on-going treatment we agreed to undergo more precise testing; MRD testing.  I’ve shown no monoclonal proteins in my blood tests in at least 3 years, so is it possible that I have no minimal residual disease? As I just wrote, I underwent a bone marrow biopsy and a PET/CT to confirm that I am MRD-. This is the best possible response a myeloma patient can achieve under today’s testing methods. It is not a cure, but it is a very deep response and a statistically good predictor for a long progression-free survival and longer overall survival. 

With that great news, I met again with my doctor and his view had changed. He was ready to recommend Pomolyst only maintenance. No more Carfilzimib and, surprisingly no more Dexamethasone. 

I’d given this much thought for months. Even though my gut tells me Carfilzimib may have been the heavy hitter getting me to MRD-, I want to take advantage of this moment of good health, no matter how short, to enjoy my life a bit more. My schedule opens, the treatments are easier, I spend more time at home, and less time driving and sitting in treatment. It is worth the chance that I may open the door to relapse even a crack to get some life back. Of course, we won’t take our eyes off the ball.

I will get blood drawn at a lab near my home once a month. I will see my care team at Seattle Cancer Center every two months. We may do another biopsy and MRD test in a few months to watch for early signs of relapse. Even so, hours, days, weeks of my life will no longer be spent driving to and from Seattle, waiting for labs, and waiting for infusions. I received a great gift of time.

Of course, this is all the cerebral part of the decision to change. I was unprepared for the emotion that was about to sneak up on me following my final carfilzomib infusion.

When I posted a short note about my new treatment plan to a General Myeloma Facebook group, a fellow patient commented, “It’s surreal, too, isn’t it? You may find you seem to have a lot of time on your hands, or you keep feeling like you’ve forgotten something. It’s awesome and terrifying at the same time.” She’s right. Surreal is exactly the feeling that began to wash over me at this moment. I’m also sure there will be days when my body expects to make a trip to Seattle and I’ll need to “pinch myself” when I remember I can stay in my pajamas and enjoy another cup of coffee.

The treatment floor at SCCA is a series of individual treatment rooms with either a patient bed or chair set up for treatment. I estimate there are about 45 treatment bays scattered around the floor.  I’m familiar with each hall and many of the bays as I’ve roamed this floor over the last 4 years (counting initial treatments).  Today I was assigned bay 14.  Just across the hall from bays 17 and 18. Those were the rooms in which I received high-dose chemo to kill my bone marrow and then received a transplant of my stem cells to reboot the production of healthy bone marrow. My autologous stem cell transplant (ASCT) happened here.

It probably snuck up on me, but suddently I put together the significance of reaching MRD negavtive status, dramatactily reducing my treatment regimine, having my doctor express how good I looked nearly five years from the first time he saw me. I am working nearly as much and as hard as I did the day before my diagnosis. I’m able to participate in nearly every past-time I’ve enjoyed my entire adult life. I have accomplished so much. Today there are so many objective and subjective measures telling me I have accomplished so much.

I have read in the past about other types of cancer patients getting to “ring a bell” as they leave their treatment for the last time. A sign of completion, joy, celebration. I’ve lamented at times that myeloma patients won’t ever “ring the bell” beacuase we never know when our treatments will be done. But walking down the hall on this day I mentally “rang a bell”, taking a last look around and silently saying “goodbye.” 

Chances are this state is not permanent, but today I won’t think about that. Today is a truly remarkable day standing out at the beginning of many more remarkable days.

────────────── ♦ ────────────────

Photo Credit: © 2012 Mark Pouley

The sunrises on another day, another field, in the Skagit Valley farmlands. The fields have produced crops for decades, but each day brings a new sunrise, new hope, a future crop.

Product Review: EasyPill

Product Review: Easy Pill – A quick and easy application to track the many daily medications I take.

Easy Pill screen shot.

Until my diagnosis, I didn’t regularly take any medications so tracking when to take a pill was never an issue. Of course, multiple myeloma changed all that. Since my stem cell transplant, I take about 11 pills per day. I say “about” because the number varies; I take at least five extra pills on infusion days, and I intermittently take additional medications to address insomnia, heartburn, cramping, neuropathy, pain, and other side effects.  

Being a geek at heart I looked at this new reality as an opportunity to find a technological solution, hopefully one that involved my iPhone and AppleWatch.

I discovered an application called Easy Pill for iOS by BirdsCorp.com and have been using it since 2016. Easy Pill is an iOS app that tracks my medications and gives me reminders when it’s time to take a pill. 

The obvious first step to using Easy Pill was to input my medications into the app. I could create a list of medications either on a mobile device or the Easy Pill web page. 

I didn’t use the web page, but if I had, I would have created a list of all my medications, doses, and schedule. The page then creates a QR code to scan with the app which then transfers all the information into the app. I tested this method and it works well. At the time I started using the app, however, I didn’t want to upload my medications to a web page I hadn’t researched.

I chose, instead, to input my information directly into the app on the phone. I wouldn’t call this process “intuitive”, but it didn’t take long for me to get the hang of it.

Honestly, part of the challenge was a good thing because it comes from choosing between the many options available. How often do you take the pill? Do you take the pill the same time every day? What is the duration of time taking this pill? Easy Pill offers a lot of flexibility to tailor the schedule exactly the way I want it for each medication. It took me a while to get everything the way I wanted, but I appreciated that I could create a schedule that was accurate and useful. 

Medications can be viewed in two different ways. In one view, pills are listed alphabetically with all their vital information. The more useful view, and the one I use most of the time, is the daily view. It shows a chronological list of all the pills I take each day. An icon next to each pill tells me the time to take the pill and the color of the icon gives a visual cue if a pill is overdue or needs to be taken in the future.

The most useful feature of Easy Pill is that it reminds me to take my medication. This is accomplished with simple alerts that appear on the phone and with a tap on my wrist from my watch. The app gives options for setting up the type and frequency of the reminders so the app can nag as much or as little as I like. When the pill is taken a single touch on the phone or watch logs the dose as taken.

Easy Pill records the exact time I took medication and the icon for the pill changes to alert me that the status has changed. I can also skip a dose or pause a medication from the reminder alert. When I finish a course of medication Easy Pill remembers that and automatically moves the medication to the archives. I can open the archives to look at the history of the medication, or move it back into my active schedule if I start taking the medication again.

I use the archives to reactivate the cycles of treatment. For instance, I take Pomalyst twenty-one of twenty-seven days. When I take pill twenty-one, the app moves Pomaylst to the archives. When I begin a new treatment a cycle I just change the start date on the archive listing and Pomalyst becomes active again in the day view on day one of the new cycle.

Another handy feature of Easy Pill, though I haven’t used it much, is a direct Google link for each medication. I can follow the link to find information about and images of each medication. This is a nice way to remember what a pill looks like and learn about common side-effects.

Easy Pill not only reminds me to take my medications, but it tracks my progress in a number of ways. Easy Pill reports how many doses and how consistently I took the medication. If I input the quantity of pills when I start, Easy Pill will remind me when it’s time to refill the prescription. 

Easy Pill also exports a medication list that includes pills that are currently taken or archived, detailed medication information and a dose log. This could be useful when I need to share a complete history of all my medications with care providers. 

Easy Pill is $2.99 and it works on the iPhone and iPad. Oh look, its time to take another pill… until next time.

Picture this

Highly sensitive imaging can be performed to identify myeloma lurking inside and outside bone marrow.


As I wrote in my last column, I recently learned that I am MRD negative.  There are a few different test methods to detect minimal residual disease and the prognostic value of the tests varies with the testing method employed.

In my case, after doctors withdrew a sample of bone marrow from my hip it was assessed using next-generation sequencing (NGS). As I understand the process, an older marrow sample is used to identify the DNA of my original myeloma cells. The assay then looks for that DNA sequence against millions of cells in the newly extracted marrow, in my case 2,922,325 cells.  If no cells with matching DNA are detected there is no minimal residual disease and the patient is said to be MRD negative.  

It is possible, however, that sequencing of the cells from a marrow sample may not detect all residual disease because myeloma can appear outside the marrow.

A PET/CT (Positron Emission Tomography)/(computerized tomography) scan is an imaging technology that allows doctors to “see” areas in the body where multiple myeloma has caused tumors in soft tissue and/or congregated in the marrow.  While sensitive analysis of the bone marrow can detect MRD inside the marrow, a PET/CT can detect minimal residual disease inside and outside the marrow. This is called “imaging” MRD testing.

To perform a PET scan a radioactive sugar is injected by IV. The sugar travels in the body normally and creates a “tracer”. When the patient is scanned about an hour after injection, images of the distribution of the sugar are obtained. Because cancer cells use sugar at a higher rate than normal cells they appear as “hot spots” in the images. The PET scans are merged with the CT tomographic x-rays, cross-sectional images of anatomical structures, to show doctors with great specificity the existence and location of cancer cells.

It is well accepted that patients that achieve a deeper response to treatment are more likely to enjoy longer progression-free and overall survival. So it follows, achieving MRD negativity, the deepest response that can currently be measured, is a good prognostic predictor. While it seems logical, research last fall concluded that patients that are both MRD negative in a bone marrow assay and imaging analysis have statistically improved progression-free and overall survival.

The PET/CT is an interesting test, but generally not too uncomfortable unless you are claustrophobic or have trouble being still for long periods.

To start, I began fasting six hours before the test and couldn’t exercise in any way. Exercise “fires” up the muscles and changes the way the muscles metabolize sugars, and that would throw off the scans. Presumably eating causes a similar issue. The fasting was a challenge, but I didn’t have much trouble sitting idle all morning and watching television.

When my appointment began I was injected by IV with a radioactive glucose solution.  I didn’t feel anything, but I was suspicious when the nurse pushed herself away from me as we continued our small talk. When the injection was complete I was told to relax and not move around for forty-five minutes to let the tracer fluid distribute through my body. I heard “take a nap” and I always follow directions.

I was called back to the scanning room and directed to go empty my bladder as best as possible. “Be careful not to get urine on your hands, it’s radioactive. Wash up well when you are done.” Encouraging instructions, I’m sure this is all safe.

 Lying flat on my back, my head in a U-shaped pillow, the bundling process began. A large rubber strap was placed around both arms at my biceps, the weight of my arms against the strap holding them in place at the sides of my chest. My toes were similarly bound to keep my feet and my legs from rotating outward. Having my arms and legs thoroughly secured, I was swaddled head-to-toe in warm blankets. This was welcome as the room was frigid.

Now resembling a mummy, the slab I was on moved back and forth, foot to head, through the large round scanning machine. It’s a bit like being passed through the hole of a giant donut.

Before the scan started the technician explained the procedure and emphasized that if I moved we would need to start over.  The scanning process was easy. I tried to relax as best I could, listened to the music in the room, and tried to ignore the desire to move around. Of course, as we started I experienced an uncontrollable urge to cough. Thankfully, about 30 minutes after we started the scans I was informed they were complete and “useable.”

I was sent home to await the results. Unlike the cellular assay, when I expected the tests to detect at least some minimal residual disease, I hoped the PET/CT would confirm the earlier MRD negative findings. The PET/CT found “No abnormal osseous or extraosseous radiotracer uptake to suggest viable myelomatous involvement.” 

In other words, the doctors were unable to identify any minimal residual disease in either the assay or imaging. Time to take a breath and savor another victory in this long journey.

────────────── ♦ ────────────────

Photo Credit: © 2010 Mark W Pouley

“Morning Calm” was 0ne of the first photos I captured when I recognized something special and needed to share it with others. The photo was taken very early in the morning on North Twin Lake. “Mirror” images are a common tool for photographers, showing the real and the reflected. By capturing a moment in time we get to see what the eye sees naturally as well as a fleeting hidden image seen only when the waters are calm.

Welcome to the Myeloma Roller Coaster

Living with multiple myeloma is full of ups and downs, twists and turns and surprises. For me an unexpected twist has led to a very happy place.

Welcome ladies and gentlemen to one of the scariest rides of our generation. It will bring you to the highest point only to drop you down at unimaginable speeds. You will enter turns you never see coming and remain breathless to the very end. Welcome to the multiple myeloma roller coaster.

When last we spoke, I was celebrating three years post-ASCT and preparing to pare back my aggressive 3-drug maintenance regimen to something more manageable. I looked forward to a return of precious time to me and my family.  Since that column, the plan shifted to more testing and continuation of the same treatment regimen.

The good news is that my general health remains outstanding with no apparent changes in my myeloma. Regular blood tests continue to register no measurable monoclonal proteins, my free-light chains are normal, and my other blood counts and kidney functions are good for a person taking regular chemotherapy medication.

My physical health is strong, in fact, we ended the summer with a fabulous family vacation to New York and I wrapped up the year attending two-week-long conferences in Minnesota and Tulsa with several hundred colleagues. 

Shortly after writing my last column I met with my doctor, but the conversation didn’t go as I expected. Instead of suggesting a reduction in treatment, he said he wanted to continue the three-drug regimen indefinitely. The reasoning was understandable, given my high-risk cytogenetics, but it was still a big disappointment.

Approaching this meeting I felt I’d achieved an unexpected turning point in my myeloma journey. The treatments had gone so well that I was considering an even greater return to my pre-diagnosis life. While that was always my hope, I didn’t know if it would happen and reaching that point was cause for celebration. While not intended, the conversation with my doctor tempered the celebration.  Wrongly or not  I felt a level of defeat.

More realistically, it all comes down to the risk of relapse. All myeloma patients have the same goals; find the best method to forestall a relapse as long as possible, and be prepared for a relapse of myeloma that is more difficult to fight than the prior incarnation. For high-risk patients like myself, the goals are the same, but the chances of a harsh relapse are greater.

My current treatment has achieved complete response for a substantial time and there are no current signs that is about to change. I’ve tolerated this level of treatment extremely well. The theory, as I’ve been told, is “if what you are doing is working keep doing it, otherwise do something else.” Because the disease could return more aggressively and may not respond as well to the next treatment there is great value to preserve the progress I’m enjoying today for as long as possible.

My doctors and I both recognized we needed more information to make this decision. On my doctor’s advice I underwent another bone marrow biopsy in November 2019, but this time we would test for minimal residual disease (MRD). With a regular blood test, doctors can identify one cancer cell in up to one-hundred thousand blood cells. By contrast, MRD testing can identify one cancer cell in one million blood cells. Because it requires a bone marrow biopsy and it is more costly than blood testing, MRD testing is not regularly prescribed. Myeloma professionals also still debate the value of MRD testing as it relates to treatment decisions for individual patients.

Because the testing requires such precise measurements I waited sixty days for the results. I was not expecting that length of uncertainty, but I tried to temper my expectations. Given the current science, being MRD negative, finding no minimal residual disease, is still fairly rare and a bit of a milestone. During my wait, I assumed I was MRD positive (there must be a monoclonal cell hiding somewhere). I felt it was better to expect the “worst” and be surprised by the best.

I finally received my MRD test results on January 15, 2020 (a whole decade after the procedure). I was shocked and ecstatic to learn I am MRD Negative.

My first reaction was surprise. Perhaps because I’ve conditioned myself to be hopeful, but not overly optimistic I didn’t expect this result. My second response was to feel validated. At least that’s the word that comes to mind. I’ve felt healthy and “normal” for a long time, but knowing I had multiple myeloma and all that goes with it I figured it was a bit illusional. While I know MRD Negative doesn’t reflect any sort of “cure”, and I remain vulnerable to relapse and all the attendant risks of myeloma, at least for this moment there is no myeloma. I’m feeling healthy because there is no cancer. I’m not fooling myself, I deserve to feel good.

I have a new appointment to have a new conversation with my doctor. We may decide that some level of treatment will continue, but I won’t be disappointed this time. I have proof that all the work and effort is paying off. I have cause for celebration, but I’m not letting down my guard. 

A lesson learned from my myeloma journey is to not allow myself to get too high or too low. Since my diagnosis I’ve been up and down the roller coaster enough times to prepare for the next big turn or drop. For now my arms are raised high, I have a big smile on my face and I’m ready for whatever comes next. 

────────────── ♦ ────────────────

Photo Credit: (c) 2019 Mark Pouley.

My family closed out 2019 making a trip to New York. For a week I set aside being a myeloma patient as we went all-in as tourists enjoying all the sights, sounds, and tastes of the “Big Apple.”