Together Apart.

© 2020 Mark Pouley

For over 30 years our house has been the home of Thanksgiving. When we were college students our apartment was the place students who couldn’t make it home for the holidays would convene. When we moved back to Washington, family, friends, friends-of-family, new significant others, new babies, and new pets migrated yearly to our home to celebrate. We will miss that this year.

Our circumstances are not unique as families across the country will experience Thanksgiving differently this year. If your traditions involve gathering with friends and family, eating, watching football, playing games, chatting, arguing, and giving thanks, this year will be strange. Granted, not everyone will heed the medical cautions and congregate as usual. I pray they don’t pay a terrible price.

Thanksgiving is my favorite holiday. There is no contest. While there are traditional foods to enjoy, my primary joy comes from the gathering. I’m close with my family, we stay in touch throughout the year, but this is the time we are all together. There is an indescribable connection on this day. Memories of Thanksgivings past and family that are no longer with us are shared. We laugh about things that happened years ago and five minutes ago. Oh, how we laugh.

I remember the first Thanksgiving after my diagnosis. While myeloma has never put me on death’s door, I’ve contemplated my early departure and how precious these times are. I’m fighting not to feel cheated this year since my health is so good. How many more Thanksgivings will I be given? While I know these negative thoughts are unhealthy I feel a greater loss this year because I know how valuable my limited time with family is.

I must pack my depressing thoughts away and deal with the hand that was dealt. That’s not denial, but acknowledging what is. The warnings are real and they are clear. We can’t safely gather this year as we have in the past. Mourning that loss, or projecting to an unknown future is pointless. I can, however, be happy for what I have. I have a choice to keep my family safe and I have hope for a better tomorrow.

There will be over 250,000 empty chairs at Thanksgiving celebrations this year. The families and friends of those lost to Covid don’t get to decide if it might be safe to get together. They don’t get to bring the family together and hope the virus skips their holiday table. For the loved ones of the passed the holidays will never be the same.

I will stay the course on my treatments and I have faith my myeloma journey has miles to go. I will be able to hold my family again and share their love. Whether it is Thanksgiving 2021 or some other day, we will be together again. In 2020, for everyone’s safety, we won’t gather on the fourth Thursday of November. Perhaps it will happen in June of 2021. Does it matter on which day we join again? If we stay safe today, we will have a tomorrow to join again.

This year we will spend the holiday Together, Apart.

Another year, oh what a year.

© 2020 Mark Pouley.

It’s that time of year again. It’s my fourth SCT birthday and the state of my body is good. I’m happily surprised I can say that. Although 2020 is taking a toll on my mind, I try to remember how lucky I am to be with my family, still working, and basically healthy. Four years ago that was all up in the air. Today I feel I’m on firmer ground.

Like the rest of the world, Covid-19, not multiple myeloma, has impacted my life the most this year. Luckily my immediate family and circle of friends have been spared from the wretched virus, but we’re all significantly impacted. I’m still working from home, avoiding public contact as much as possible and I haven’t hugged a grandchild since March.

On the positive front, with my wife and daughter (my multigenerational housemate) we’ve completed numerous home-improvement projects this year. The gardens and yard around our house look spectacular. I’ve also discovered that retiring from daily trips to the office might not be as boring as I imagined. I’m now hoping my good health holds long enough for me to leave work voluntarily in a few years and make this a normal state of affairs.

Earlier this year I learned I was MRD negative. While my monthly labs are technically unable to confirm MRD status, they continue to show no sign of myeloma. I’m thankful that I’ve remained cancer free nearly the entire 4 years since my SCT. Except for fatigue and “chemo brain” I’ve been relatively symptom and side-effect free as well.

Because I’ve stayed so healthy, my care team decided I could reduce the medications included in my maintenance regime. I dropped weekly trips to the cancer center for Kyprolis infusions and bid farewell to the mood swings and sleeplessness caused by Dexamethasone. I continue to take Pomalyst 21 of 28 days. This, however, has created issues I’m still dealing with.

When I switched to Pomalyst only maintenance the dosage was doubled to 4mg. My fatigue increased and daily naps became the norm. My monthly blood tests revealed my tiredness was caused because my white cell count and neutrophils tanked. For the first time since my SCT I’d become neutropenic. Obviously this is extra dangerous during a world-wide pandemic.

My care team had me hold the Pomalyst a week and retake my labs. My white count and neutrophils returned so I’m back on medication. While I will repeat the labs this week, we now know my system is working (it produced good cells absent the medication), so we just need to pinpoint a safe and effective dose.

While this episode was briefly troubling, it is encouraging to see my system respond quickly and positively once the medication was removed. That means my marrow is still resilient even after 4.5 years of constant chemotherapy. The episode was an important reminder that I need to be extra careful. Complacency at this time could have very serious consequences, no matter how good I feel.

The months after my diagnosis were my darkest mentally in my life. Time, support and counseling helped me out of a dark hole. This year is challenging for the crown of “worst”. Not surprisingly surviving cancer has only been a small part of my troubles. Like many others, the state of the world today weighs heavily on my mind. I’m trying hard to be optimistic, a skill honed after my diagnosis, but it’s challenging.

I approach this birthday melancholy for sure, but there is much to be thankful and hopeful. Unlike this time in 2016, when I counted each day post transplant, today I’m planning for years from now. I’m no longer mourning my lost retirement years, but looking forward to them.

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.

Surviving during a pandemic

Snow geese gather in the Skagit Valley fields, in the shadow of Mt. Baker.

This is an interesting time to be living with cancer. For the first time in my life, I realize I’m now in the class of “highly vulnerable adults.” While this has been true during all flu seasons since my diagnosis it took a pandemic for me to process what this means, and to empathize with other’s that have been in this group much longer. 

Since my transplant in 2016, I’ve understood that I’m more vulnerable to viruses and infections and I need to use extra caution. During the transplant itself, we took extraordinary measures to keep me healthy. Even so, except for the time immediately after my transplant, I’ve generally been able to live a “normal” life with some precaution. 

With Covid-19, safety measures for everyone are turned to high, and for those of us with compromised immunities, they’re off the charts. While I feel lucky to be as healthy as I am, and I feel for my fellow patients that aren’t as healthy right now, this outbreak brings a new sense of anxiety and a new perspective.

Too often during this outbreak, I’ve heard healthy people say, “It’s no worse than the flu. The symptoms are minor and I’ll get over it easily.”  While there may be other issues at play this year behind such statements, they are not unheard any time we have a wave of flu or other illness. What these people may not understand is that this sentiment disregards the risk faced by the vulnerable population.

Hopefully, as declarations of emergency spread worldwide, people are learning the error of such sentiments. While it is true that most people will overcome this virus just fine, we are all responsible for each other. 

Mild symptoms for the healthy can lead to fatal consequences for a grandparent, a co-worker or neighbor with cancer, or a stranger with asthma encountered in the store. Taking care of oneself is also taking care of the people we encounter. 

Now that I’m in that vulnerable population I better understand the feeling of being dismissed, mostly unintentionally, by so many. I hear it. It does hurt.

I’m responsible for my own health, but I depend on the actions of many others. I realize now, I depend on the healthy population to take steps to help me stay healthy. 

I feel guilty at times. My wife and children are making sacrifices because they want to protect me. When I hear their deliberations and plans to avoid points of exposure, staying home from events (before they were all canceled) and delaying birthday celebrations I feel sad. Similarly, my co-workers have always been careful to shield me from their coughs and colds and other sources of germs that come into our workplace. The impact of my disease goes beyond my life and to theirs.

After some thought, I understand and appreciate their sacrifice. While I may be the most immediate beneficiary of their thoughtfulness, I now better appreciate their act of community sacrifice. 

Like most others, I’m more upset by the disruption to life this is causing than I am by any personal threat. While I don’t feel particularly fearful of Covid 19, I know that if I became infected it could be dangerous. Even so, I think the reason I’m not afraid is that I’m surrounded by people that care about me and are acting to protect me. 

I’m sure there will be a lot of lessons that come out of this shared crisis, but hopefully one of them will be a keener understanding of how much we depend on one another and how hurtful it is when we dismiss people that are different from us. 

At times like these, I resort to the words of a great philosopher,

“The needs of the many outweigh the needs of the few.” – Spock

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Photo Credit: © 2020 Mark Pouley

During my recent isolation I took some time to get away from the news and get outside to enjoy the beautiful nature around my home. Each year flocks of Snow Geese use the farmlands of the Skagit Valley as a rest area to fatten up for a long migration. They can be seen, and heard, eating in the fields and flying in massive groups in the shadow of Mt. Baker.

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.

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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.