Between the Chapters: Why I Wrote Day Zero

There are parts of our lives we remember because they were extraordinary.

Then there are parts we remember because they changed us.

And sometimes, strangely enough, the moments that changed us most are the ones we don't remember at all.

That is part of the reason I wrote Day Zero.

When I wrote Skywalk to Survival, I told the story of being diagnosed with multiple myeloma during the beginning of the COVID-19 pandemic and everything Lance and I went through trying to get me to a stem cell transplant.

But getting to transplant wasn't the end of that story.

In many ways, it was only the beginning.

What Is Day Zero?

In the stem cell transplant world, Day Zero is the day your stem cells are returned to you.

Before that can happen, you receive high-dose chemotherapy intended to destroy as much remaining myeloma as possible while profoundly suppressing your bone marrow and its ability to produce blood cells.

Then your previously collected stem cells are infused back into your body.

The hope is that they find their way home to the bone marrow, engraft, and begin rebuilding your blood and immune system.

It sounds remarkably straightforward when written like that.

Living through it is something else entirely.

For transplant patients, Day Zero is often called a new birthday or rebirthday.

Mine was August 24, 2020.

I remember the stem cell bags. I remember the strange pink-orange color that reminded me of tomato soup. I remember the nurses celebrating this new birthday with me.

But Day Zero isn't simply a book about August 24.

It's about everything that surrounded it.

The Story I Hadn't Completely Told

There are things about transplant that are easy to explain medically.

Your blood counts fall.

Your immune system becomes severely compromised.

Your platelets can fall dangerously low.

You wait for engraftment.

You watch numbers every day, hoping they will finally turn around.

Those are the clinical facts.

What the clinical explanation doesn't tell you is what it feels like to lie in a hospital room and watch those numbers disappear.

It doesn't tell you what it is like when a whiteboard on the wall says platelets below 10 require transfusion and then your own platelet count reaches 7.

It doesn't explain what happens to the person inside that body.

Or the person sitting beside them.

That is the story I wanted Day Zero to tell.

Then There Are the Days I Don't Remember

This was probably the most difficult part of writing the book.

I remember much of my transplant clearly.

I also have a stretch of time that simply isn't there.

My body was going through some of the most serious complications of the entire transplant process, yet my own memory of those days is incomplete.

There are things I know because Lance remembers them.

There are things I know because they were written in my journal.

There are things I know because the medical record tells me they happened.

And there are fragments that belong only to me.

One of those fragments is my father's voice.

My dad had died the year before my transplant. Yet somewhere inside those missing days, I heard him telling me to keep fighting.

I can't explain it.

I don't try to.

I only know that I heard him.

And I held on.

Writing What You Can't Remember

Memoir usually asks the writer to reach backward into memory.

This book sometimes required me to do the opposite.

I had to accept where my memory stopped.

I didn't want to manufacture details simply because they would make a scene more complete. If I didn't remember something, I had to say that I didn't remember it.

So I went back to what remained.

My journals.

The numbers.

The medical information.

Lance's memories.

And the pieces my own mind managed to keep.

Some of what I found surprised me. Some of it made me laugh. Some of it made me cry. And some of it made me realize just how sick I had actually been.

When you're the patient, you're often too busy surviving to understand the full story while it's happening.

Sometimes you don't understand it until years later.

More Than a Transplant Story

I also didn't want Day Zero to become a medical textbook.

There are plenty of places to learn the mechanics of an autologous stem cell transplant.

I wanted to tell you what those mechanics look like from the bed.

The 3 a.m. labs.

The vital signs.

The routines.

The isolation.

The nausea.

The numbers on the board.

The person you love having to leave.

The uncertainty.

The waiting.

And eventually, the first tiny signs that your body may be finding its way back.

Because recovery doesn't arrive dramatically.

There isn't a moment when someone walks into the room and announces that everything is going to be fine.

For me, it came in numbers.

Numbers falling.

Numbers bottoming out.

And eventually, numbers beginning to rise.

Why Tell This Story Now?

Six years have passed since my Day Zero.

Time changes the way we look at things.

When I was living through transplant, my job was simple: get through the next hour, the next blood draw, the next day.

Years later, I can see the story differently.

I can see Lance's story alongside mine.

I can see how much of survival happened outside my awareness.

I can see how something described as a "rebirthday" can be both hopeful and terrifying.

And I understand now that surviving transplant didn't magically return me to the person I had been before cancer.

It couldn't.

That person had walked into the hospital.

Someone different eventually walked back out.

That is why Day Zero needed to be its own book.

Skywalk to Survival is the story of fighting to reach transplant.

Day Zero is the story of surviving it.

And Still Here will tell the story of what came afterward—because survival wasn't the end of the story either.

It was the beginning of another one.

August 24, 2020

There are birthdays we celebrate because we entered the world.

Then there are days we mark because, somehow, we remained in it.

August 24 will always be both complicated and extraordinary for me.

It was the day my stem cells came home.

It was the beginning of some of the hardest days of my life.

It was the beginning of a recovery I couldn't yet see.

And six years later, I finally sat down and told the story.

That story is Day Zero.

What Myeloma Treatment Can Do to Your Teeth—and Why Nobody Talks About It

The unexpected connection between myeloma treatment, dry mouth, dental problems, and the health of your jaw.

There are some side effects of myeloma treatment everyone warns you about.

Fatigue. Nausea. Hair loss. Neuropathy. Low blood counts.

Your teeth? Not so much.

I was fortunate. I went through chemotherapy, high-dose melphalan, and a stem cell transplant without developing significant problems with my teeth.

But over the years, I've watched patient after patient describe something very different.

“My teeth have gotten terrible since treatment.”

“I never had cavities like this before.”

“My teeth are breaking.”

“My mouth is constantly dry.”

“My dentist says I need an extraction, but my oncologist is concerned about my bone medication.”

When you hear the same complaints often enough, you start wondering whether there's actually a connection.

There is.

And like so many things with multiple myeloma, there isn't just one explanation.

It May Start with Something as Simple as Saliva

We don't give saliva much thought until we don't have enough of it.

Saliva does much more than keep your mouth wet. It helps wash food particles from your teeth, control bacteria, neutralize acids, and protect tooth enamel.

Cancer treatment and many of the medications used during treatment can contribute to dry mouth, or xerostomia.

That can create the perfect environment for dental problems.

With less saliva protecting the mouth, bacteria and acids have more opportunity to damage teeth. Over time, that can contribute to cavities, tooth decay, gum problems, sensitivity, and oral infections.

So, when someone says, “My teeth went downhill after cancer treatment,” it doesn't necessarily mean the treatment directly attacked their teeth.

Sometimes treatment changes the environment that had been protecting those teeth every day.

Chemotherapy Affects More Than Cancer Cells

Chemotherapy targets rapidly dividing cells. Unfortunately, cancer cells aren't the only rapidly dividing cells in our bodies.

The cells lining our mouths can be affected, too.

That's one reason chemotherapy can cause mouth sores, inflammation, changes in taste, infections, and other oral problems.

During a stem cell transplant, there is another concern: our blood counts can become extremely low.

Low white blood cells can make infections more dangerous. Low platelets can increase the risk of bleeding. Meanwhile, tissues in the mouth may not heal as normally as they would when the immune system and blood counts are healthy.

That means dental care during treatment sometimes requires coordination between the dentist and oncology team rather than simply making an appointment and having a procedure done.

Then There Are the Bone-Strengthening Drugs

This is one every myeloma patient should know about.

Many of us are offered medications specifically to protect our bones because myeloma can interfere with normal bone remodeling and cause lytic lesions, fractures, and other skeletal damage.

These medications may include zoledronic acid (Zometa), pamidronate (Aredia), or denosumab (Xgeva).

They can provide important protection for myeloma-damaged bones, but they also carry a risk of a serious complication called medication-related osteonecrosis of the jaw, or MRONJ.

In simple terms, an area of jawbone can become exposed or damaged and fail to heal normally.

The risk is particularly important when someone needs an invasive dental procedure, such as a tooth extraction.

This doesn't mean people receiving these medications can't have dental care. Quite the opposite. Good preventive dental care becomes especially important. But your dentist needs to know about these medications, and invasive procedures may require coordination with your oncology team.

And don't assume it no longer matters simply because you finished treatment.

Tell your dentist about your myeloma history and any bone-modifying medications you've received, including medications you received in the past.

This One Was Personal for Me

When I was diagnosed with multiple myeloma, Zometa was one of the medications I was told I had to have because of the damage myeloma can cause to the bones.

I did what I tend to do.

I researched it.

I understood why it was recommended and the benefits it could provide, but I also learned about osteonecrosis of the jaw and the potential complications surrounding invasive dental work.

I didn't like that risk.

So, when it came time to make the decision for myself, I refused Zometa.

A few months after my myeloma diagnosis, my brother-in-law was diagnosed with non-Hodgkin lymphoma. Zometa became part of his treatment, and unlike me, he chose to receive it.

Later, he developed serious dental problems and eventually had to have all of his teeth removed. His history with Zometa added another layer of concern because invasive dental procedures can be more complicated for someone who has received these types of bone-modifying medications.

We were two cancer patients in the same family who made different decisions.

I refused Zometa because I wasn't comfortable accepting the risk. He received it and later faced serious dental problems that ultimately required the removal of his teeth.

I can't say Zometa alone caused what happened to my brother-in-law. Cancer patients can develop serious dental problems for many reasons, and receiving Zometa certainly doesn't mean someone will lose their teeth.

But what he went through reinforced the concerns I already had when I made my own decision.

Zometa and other bone-modifying medications can be extremely valuable for people with myeloma, particularly when the disease has weakened or damaged their bones. Every treatment decision involves weighing potential benefits against potential risks.

For me, this was one risk I wasn't willing to take.

Years later, I still haven't experienced the significant dental problems I worried about when I made that decision.

Does that prove I made the right decision for everyone?

Absolutely not.

It simply means I made the decision that was right for me.

Why Doesn't Everyone Have Dental Problems?

That's another important part of this conversation.

I didn't have them.

And that doesn't contradict the experiences of patients who have.

Multiple myeloma has taught me repeatedly that two people can receive similar treatments and walk away with completely different side effects.

One person develops severe neuropathy. Another doesn't.

One struggles with gastrointestinal problems. Another barely does.

One develops significant dental problems. Another finishes treatment with their teeth seemingly unchanged.

Treatment history, medications, age, existing dental health, saliva production, immune function, oral hygiene, nutrition, hydration, and individual biology can all play a role.

That's why I don't think we should dismiss someone's experience simply because it didn't happen to us.

Your Dentist Is Part of Your Cancer Care, Too

We spend so much time thinking about oncologists, hematologists, transplant specialists, nurses, pharmacists, and lab results that it's easy to forget about the dentist.

But oral health matters during cancer treatment and survivorship.

Your dentist should know:

• that you have or have had multiple myeloma;
• whether you've had chemotherapy or a stem cell transplant;
• which medications you're currently taking;
• whether you've received Zometa, Aredia, Xgeva, or another bone-modifying medication; and
• whether your blood counts or immune system are currently suppressed.

Your oncology team should also know when you're facing a significant dental procedure. Particularly an extraction or another procedure involving the jaw.

The goal isn't to make people afraid of going to the dentist.

It's exactly the opposite.

Preventive dental care can help identify smaller problems before they become bigger problems that may require invasive treatment.

Another Part of Life After Myeloma

Cancer treatment doesn't always end when the infusion stops.

Sometimes its effects show up in places where we never expected—our nerves, our eyes, our kidneys, our bones, our energy levels and, yes, even our mouths.

I was fortunate when it came to my teeth.

Other myeloma patients haven't been.

Their experiences are worth talking about because someone preparing for treatment today may be able to better protect their oral health tomorrow simply because another patient spoke up.

That's one of the reasons I continue writing about these seemingly little things.

Because after cancer, you discover that they really aren't little things at all.

Surviving cancer and living after cancer really are two different things.

And sometimes living after cancer means learning that something as ordinary as taking care of your teeth deserves a place in the cancer conversation, too.

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Medical disclaimer: This article reflects my personal experience and is for educational purposes only. It is not a substitute for medical or dental advice. Bone-modifying medications can provide important benefits for people with myeloma, and treatment decisions should be made with your healthcare team. Always tell your dentist and oncology team about current or previous bone-modifying medications before invasive dental procedures.

Surviving Cancer and Living After Cancer Are Two Different Things

When someone is diagnosed with multiple myeloma, the first goal seems obvious: survive.

Get through the next appointment. Start treatment. Manage the side effects. Watch the numbers. Reach a response. If a stem cell transplant is part of the plan, get through collection, conditioning, transplant, and recovery. If maintenance therapy follows, adjust to another new routine.

Cancer has a way of shrinking life into smaller, more manageable pieces. Looking too far into the future can feel overwhelming when you don't yet know what the next appointment, treatment, scan, or lab result will bring. Instead of thinking about next year—or even next month—you learn to focus on what is directly in front of you. Get through today. Make it to the next appointment. Finish this treatment cycle. Reach the next milestone. Sometimes survival requires putting the future aside because the present is already demanding everything you have.

Eventually, though, the immediate crisis begins to settle. Treatment may become more routine, your numbers may stabilize, appointments may become less frequent, or you simply become more accustomed to this life you never expected to be living. Cancer may still be there, especially with a disease like multiple myeloma, but it no longer occupies every thought of every day. For the first time in a long time, there is enough space to look beyond simply getting through the next thing.

That is when many people discover that surviving cancer and learning how to live after cancer are two very different things. Survival teaches you how to get through the hardest days. Living asks you to begin looking forward again—to make plans, rediscover the things that mattered before cancer, find new things that matter now, and allow yourself to imagine a future even though you understand better than most that the future is never guaranteed.

Surviving is about getting through today. Living is about giving yourself permission to believe there can be a tomorrow worth planning for.

When Life Becomes About Survival

Before cancer, most people build their calendars around everyday life. Work schedules, family gatherings, birthdays, vacations, home projects, holidays, school events, dinner with friends, and all the ordinary responsibilities that once seemed important compete for space. You make plans weeks or months in advance without giving much thought to whether you'll physically be able to keep them. The future feels like something you can comfortably assume will be there.

After a cancer diagnosis, the calendar begins to look very different. Lunch dates are replaced by oncology appointments. Afternoon plans have to work around infusions. Blood draws, scans, bone marrow biopsies, prescription deliveries, specialist visits, and treatment cycles become recurring events. Plans are made with conditions attached: if I'm feeling well enough, if my counts are good, if treatment stays on schedule, if the doctor says it's okay.

Even the language of everyday life changes. Conversations that once revolved around family, work, weekend plans, or what you're doing for the holidays suddenly include words you may never have heard before. Monoclonal proteins, light chains, cytogenetics, induction, remission, progression, maintenance, and transplant become part of your vocabulary. You learn medications you never wanted to know, understand laboratory results you once would have ignored, and begin discussing your own blood and bone marrow as casually as you once discussed the weather.

Without realizing exactly when it happened, cancer begins organizing your life. Instead of fitting appointments around your plans, you find yourself fitting your plans around cancer.

Meanwhile, everyone else's life keeps moving.

People go to work. They complain about traffic. They plan vacations. They argue about what to have for dinner. They schedule things months in advance without wondering whether a treatment cycle or blood count will interfere.

The person with cancer may feel as though they are watching that world from the outside.

It isn't necessarily sadness or self-pity. Cancer simply demands attention. When your immediate job is staying alive, there may not be much energy left for living the way you once did.

Survival Is Measured in Numbers

Multiple myeloma patients quickly learn that cancer survival is often measured in numbers.

M-protein. Free light chains. Ratios. Hemoglobin. Creatinine. Calcium. Platelets. Neutrophils. Bone marrow plasma-cell percentages. Imaging results.

Numbers that once would have meant absolutely nothing can suddenly determine whether treatment is working or whether the next conversation with the oncologist will be reassuring or difficult.

Patients become remarkably knowledgeable about their own laboratory results. They learn which numbers typically fluctuate and which changes deserve attention. They may know their results before their next appointment and already have questions prepared.

But survival eventually develops another set of measurements.

Can I walk farther today? Can I make dinner or  get through the grocery store? Can I work a full day or travel again? Can I make plans without first checking my treatment schedule? Can I wake up and think about something other than cancer?

Those milestones may never appear in a medical chart, but they matter just as much to the person living through cancer. A laboratory report can show that treatment is working, numbers are improving, or the disease is responding, but it cannot measure the moment someone begins to feel like themselves again. Being able to return to work, walk through a grocery store, spend an afternoon with family, travel, enjoy a hobby, or simply get through an ordinary day without cancer occupying every thought can be its own measure of recovery. The numbers may show that treatment is doing its job, but being able to participate in life again reminds the patient what all that treatment was for.

The Body May Recover Before the Mind Does

Cancer changes the relationship people have with their bodies. Before cancer, an aching back might simply mean sleeping in an awkward position, fatigue could be blamed on a busy week, and a strange pain might be easily dismissed as something that would eventually go away. After a multiple myeloma diagnosis, those same symptoms can carry an entirely different weight. Back pain can raise questions about bone involvement, fatigue can make someone wonder whether it is caused by poor sleep, treatment, anemia, or disease activity, and an abnormal laboratory result can create uncertainty about whether it is an insignificant fluctuation or the beginning of a meaningful change. Symptoms that once barely deserve a second thought can suddenly become reminders that the body can no longer be taken for granted.

This doesn't mean every survivor lives in constant fear. Many don't but once your body has surprised you with a serious diagnosis, the unquestioned trust you once had in it can be difficult to regain. Part of living after cancer is learning to balance awareness with fear: listening to your body, reporting new or persistent symptoms, following laboratory trends, and keeping appointments without allowing cancer to become the explanation for every ache, pain, or tired day. Remaining vigilant is important but living every day expecting the cancer to return or progress can become its own kind of prison, preventing you from fully participating in the life you worked so hard to preserve. Recovery isn't about ignoring your body or pretending cancer never happened; it's about learning to trust yourself enough to recognize when something needs attention while also accepting that sometimes a sore back is simply a sore back, fatigue is just fatigue, and an ache really is just an ache.

There Is No Finish Line With Myeloma

The word "survivor" can be complicated for people living with multiple myeloma because myeloma doesn't always provide the clear ending people often associate with cancer treatment. For some, treatment continues for years through maintenance therapy, while others experience long periods of remission with little or no treatment, and still others move through multiple lines of therapy as the disease changes or progresses. There may be months or even years when myeloma settles quietly into the background and life begins to feel normal again, followed by periods when rising numbers, new symptoms, additional testing, or a change in treatment suddenly brings it back to the center of everyday life. For many people with myeloma, survivorship isn't about reaching a point where cancer is permanently left behind; it's about learning how to live fully through the quiet periods, the uncertain periods, and the times when myeloma once again demands attention.

That can make the traditional idea of "life after cancer" difficult for people living with multiple myeloma because there may never be a clear point when cancer is completely left in the past. Instead, there is life with the knowledge of myeloma—knowing it may remain quiet for a long time, require ongoing treatment, or someday demand attention again. That distinction matters because survival doesn't require pretending cancer never happened or trying to return to exactly who you were before diagnosis. It means learning how to carry the experience with you without allowing it to control every decision, every plan, or every day that follows. Myeloma may always be part of the story, but it doesn't have to become the entire story.

Finding a New Normal

Cancer survivors frequently hear the phrase "new normal," and it can be frustrating because many people don't want a new version of their lives. They want the life they had before cancer back. But finding a new normal doesn't necessarily mean accepting something worse or settling for less. It can simply mean recognizing that an experience as significant as cancer changes people, sometimes in ways they never expected. Priorities may shift, work may no longer hold the same importance, relationships may be viewed differently, and the way time is spent can take on new meaning. Some friendships grow stronger because certain people step forward when they are needed most, while others quietly fade away. The new normal isn't about allowing cancer to define the rest of life; it's about accepting that you may not be exactly the same person you were before and learning how to build a meaningful life as the person you are now.

Things that once seemed incredibly important may suddenly feel trivial after cancer, while the most ordinary parts of life can become unexpectedly precious. Going to the grocery store, working in the yard, taking a vacation, sitting through a child's school program, having coffee with a friend, making dinner, or going to work and complaining about Monday can take on an entirely different meaning. Even an ordinary Tuesday when absolutely nothing medically significant happens can feel like a victory. That doesn't mean cancer survivors are expected to spend every day overflowing with gratitude simply because they are alive. They are still allowed to be in a bad mood, become irritated in traffic, worry about bills, complain about work, argue with family, hate the weather, and be frustrated by all the ordinary annoyances of life. Being grateful to be alive doesn't mean being grateful for every minute of being alive. In fact, reaching the point where you can complain about something completely insignificant without cancer entering the conversation may be its own kind of milestone, sometimes returning to ordinary frustrations is evidence that life has finally begun to feel ordinary again.

Giving Yourself Permission to Plan

One of the hardest parts of life after cancer can be allowing yourself to believe in the future again. Should you plan the vacation, start the project, change careers, buy a house, or book something for next year? Cancer teaches you how quickly carefully made plans can disappear with a single phone call, test result, or unexpected change in your health, and once you've experienced that kind of uncertainty, planning too far ahead can almost feel like tempting fate. It can seem safer to wait until the next appointment, the next scan, or the next set of lab results before committing to anything. But eventually, you begin to understand that certainty was never something any of us actually had; cancer simply made that truth impossible to ignore. Learning to live again means giving yourself permission to make plans anyway, not because the future is guaranteed, but because believing you have a future is part of truly living in the present.

Cancer simply makes life's uncertainty impossible to ignore, but living after cancer eventually means choosing to make plans despite that knowledge. Make the reservation, celebrate the anniversary, plant something that won't bloom until next year, buy tickets for something months away, and put something on the calendar simply because you want to be there. Planning for tomorrow doesn't mean denying the possibility that cancer could interfere or pretending that nothing can change; it means refusing to let that possibility control the life you're living today. Plans may have to change, appointments may get in the way, and uncertainty will always exist, but cancer has already taken enough. Making plans for the future is a way of refusing to give cancer ownership of tomorrow before tomorrow even arrives.

Survival Doesn't Always Look Inspirational

There is tremendous pressure surrounding cancer survivorship to be inspirational, to be strong, stay positive, keep fighting, and remain grateful simply to be alive but cancer survivors don't owe anyone a performance of courage or positivity. Survival can include anger, fear, frustration, and grief for everything cancer may have changed or taken away, including physical abilities, careers, relationships, fertility, independence, financial security, plans for the future, or simply time that can never be returned. Someone can be profoundly grateful to be alive while still hating what they had to endure in order to remain alive, and they can appreciate the life they have while grieving the life they expected to have. Those feelings don't cancel each other out, nor do they make someone less strong or less grateful; they are simply part of the complicated reality of surviving cancer and, more importantly, part of being human.

From Surviving to Living

During treatment, surviving may be enough. There are periods when getting through the day is an accomplishment. There is no requirement to find a deeper meaning in it. Sometimes the goal really is simply to reach tomorrow. But as life becomes more stable, another question may begin to emerge: What do I want to do with the life I fought so hard to keep?

There isn't one correct answer for what life after cancer is supposed to look like. For one person, it may mean traveling to places they've always wanted to see, while for another it may simply mean returning to work and rebuilding a familiar routine. It might mean spending more time with family, volunteering, creating something meaningful, changing priorities, advocating for other patients, or choosing a quieter and more peaceful life. It doesn't have to involve a dramatic transformation, a bucket list, or a determination to make every moment extraordinary. Surviving cancer doesn't create an obligation to do something remarkable with the life that follows. A meaningful life can be found in family dinners, familiar routines, hobbies, work, laughter, quiet mornings, and completely uneventful days. Sometimes the greatest victory after cancer isn't creating an extraordinary life at all. It's finally being able to live an ordinary one.

Life After Cancer Is Still Life

Cancer changes people, but it doesn't have to define everything that follows. There will still be appointments and laboratory results, and there may be treatments, scans, medications, side effects, and periods of uncertainty. For someone living with multiple myeloma, there may be times when cancer settles quietly into the background and others when it suddenly moves back to the center of life. But between those moments, life continues. Birthdays are celebrated, families grow, trips are taken, projects are started, dinner gets burned, people fall in love, dogs need walks, laundry piles up, and people laugh until they cry and sometimes cry until they can laugh again. There will be spectacular days and terrible ones, but most will simply be ordinary days somewhere in between. Survival isn't necessarily the moment treatment ends, the day remission is reached, or another anniversary marked on the calendar; survival is everything that comes afterward. Perhaps the goal isn't to spend the rest of life celebrating the fact that cancer was survived, but to eventually reach a place where life becomes bigger than cancer again—where cancer may remain part of the story without being the focus of every chapter. Because staying alive is the first victory; learning how to make that life your own again is what comes next.

Learning how to live again is the next one.

Through Their Eyes: How KT Roland Used Her Granddaughters to Help Children Understand Multiple Myeloma

How do you explain multiple myeloma to a child?

For adults, the disease can be difficult enough to understand. We talk about plasma cells, bone marrow, abnormal proteins, chemotherapy, stem cell transplants, remission, relapse, and countless blood tests.

But a toddler doesn't need a lesson in hematology.

A grade-school child, however, may be ready to understand a little more.

That realization led author and multiple myeloma advocate KT Roland to approach the subject in two different ways, using her granddaughters, Amelia and Adele, to help explain Grandma's cancer at different levels of childhood understanding.

The result was two children's books with one shared purpose: helping children understand what it means when someone they love is living with multiple myeloma.

Starting With the Youngest Children

For very young children, cancer is an abstract concept.

They don't understand bone marrow or plasma cells. They understand what they can see.

Grandma looks like Grandma.

She still smiles. She still gives hugs. She still reads stories and laughs. She may still play, cook, go places, and do many of the things she has always done.

So how can Grandma be sick?

That question is at the heart of Grandma Doesn't Look Sick: Unmasking Multiple Myeloma Through a Child's Eyes, featuring Roland's granddaughter Amelia.

For younger children, understanding myeloma begins not with the biology of cancer but with something much simpler:

Sometimes people can be sick even when we can't see their illness.

That is an important concept for little minds.

A young child might think being sick always means having a fever, coughing, staying in bed, or looking visibly ill. If Grandma doesn't look that way, being told that Grandma has cancer can be confusing.

Amelia's perspective gives younger readers a way into that conversation.

Grandma might look fine but feel tired.

Grandma might need to rest even though she was playing earlier.

Grandma might go to the hospital even though she doesn't look sick.

And sometimes Grandma may have to say no to something she really wants to do.

The message isn't meant to frighten children.

It's meant to help them understand what they are already seeing.

As Children Grow, So Do Their Questions

Eventually, “Grandma is sick even though she doesn't look sick” may no longer be enough.

Children get older.

They hear more.

They ask more.

They want to know why.

What is cancer?

What is happening inside Grandma's body?

Why does she need treatment?

Why does she have so many blood tests?

Why is she tired?

Why does she hurt?

Why does everyone worry so much about her getting an infection?

Those questions require a different kind of conversation.

That's where Roland's second children's book, Understanding Grandma's Battle with Multiple Myeloma, comes in.

This time, her granddaughter Adele helps guide children through a more detailed explanation of Grandma's disease.

Rather than simply understanding that an illness can be invisible, older children can begin learning what multiple myeloma actually means.

The explanations can grow along with the child.

Two Granddaughters. Two Levels of Understanding.

Using Amelia and Adele allowed Roland to look at myeloma through two very different sets of young eyes.

One child might simply need to understand:

Grandma is sick even though she doesn't look sick.

Another may be ready to understand:

Grandma has a type of blood cancer called multiple myeloma, and it affects cells inside her bone marrow.

Neither explanation is wrong.

They're simply meant for children at different stages of development.

That's important when families talk about cancer.

We sometimes think there is one “cancer conversation” we need to have with children. We sit them down, explain what is happening, answer their questions, and hope we've handled it correctly.

But children grow.

Their ability to understand illness grows with them.

And their questions change.

A toddler's question may be, “Can Grandma play today?”

A preschooler's question may be, “Why is Grandma tired?”

A grade-school child's question may become, “What does cancer do?”

Eventually, an older child may ask the question every family dreads:

“Can Grandma die from it?”

Each stage deserves an honest answer appropriate for that child's ability to understand it.

Children Don't Need Every Detail—They Need the Right Details

There is a difference between being honest with children and overwhelming them.

A three-year-old doesn't need survival statistics.

A five-year-old doesn't need to understand an M-spike.

A seven-year-old doesn't need a detailed explanation of cytogenetics.

But children do need enough information to make sense of what's happening around them.

They need to know Grandma's tiredness isn't because she doesn't want to play.

They need to know they didn't cause Grandma's cancer.

They need to know cancer isn't contagious.

They need to know why washing their hands and staying away when they're sick can be especially important.

Most of all, they need to know they can ask questions.

Turning Real Love Into Stories

There is something especially meaningful about telling these stories through Amelia and Adele.

They aren't simply fictional children learning that someone's grandmother has cancer.

They represent grandchildren trying to understand something that became part of their own family's story.

For KT Roland, multiple myeloma isn't an abstract disease.

It's part of life.

And that means it became part of her granddaughters' lives, too.

Children in families affected by cancer don't get to choose whether cancer enters their world. It arrives through Grandma, Grandpa, Mom, Dad, a sibling, or another person they love.

What adults can choose is how we help them understand it.

A Conversation That Can Grow With the Child

Together, Grandma Doesn't Look Sick and Understanding Grandma's Battle with Multiple Myeloma offer families two starting points.

For toddlers and younger children, begin with what they can see and feel.

Grandma has an illness you can't always see. She may get tired or hurt sometimes, but she still loves you just as much.

As children reach grade-school age and become curious about what is actually happening, the conversation can expand.

Grandma has multiple myeloma. It's a type of cancer involving cells inside her bone marrow. Her doctors use medicines and treatments to help control it and keep her as healthy as possible.

And the conversation doesn't have to end there.

As children grow, their understanding can grow with them.

More Than Books About Cancer

Ultimately, these books teach something bigger than the definition of multiple myeloma.

They teach children about empathy.

They teach them that we can't always tell how someone feels by looking at them.

They teach them that illness can change what a person is able to do without changing who that person is.

And perhaps most importantly, they help children understand that cancer doesn't erase the relationship they had before the diagnosis.

Grandma is still Grandma.

She may need more rest.

She may have doctor's appointments.

She may take medicine.

Some days may be harder than others.

But there are still stories to read, pictures to draw, hugs to give, jokes to tell, memories to make, and love to share.

Explaining Myeloma One Little Question at a Time

There may never be a perfect way to explain cancer to a child.

Maybe there doesn't need to be.

Perhaps we simply start where they are.

We listen to the question they're asking today and answer that question at the level they can understand.

Then, as they grow, we give them a little more.

Through Amelia and Adele, KT Roland created two different ways for families to begin those conversations—from the toddler trying to understand why Grandma doesn't look sick to the grade-school child beginning to understand what multiple myeloma actually is.

Because children don't need us to tell them everything at once.

They need us to help them understand, one question and one stage of childhood at a time.

 

The Treatment Ends, But Does the Cellular Impact?

When we talk about a stem cell transplant for multiple myeloma, we usually talk about the big things: high-dose chemotherapy, transplant day, waiting for our counts to recover, and eventually going home.

But what happens inside our cells after all of that?

The melphalan leaves the body fairly quickly. That doesn't necessarily mean every biological effect starts and disappears just as quickly.

That is where mitochondria become interesting.

First, What Does Melphalan Actually Do?

Before an autologous stem cell transplant, patients usually receive high-dose melphalan, a powerful chemotherapy drug. I like to explain its job simply: melphalan destroys the myeloma cells and severely damages the bone marrow, and then our stem cells come back in to rescue us. Melphalan damages DNA and kills rapidly dividing cells, but healthy cells can also be affected. That's why we may experience hair loss, mouth sores, stomach problems, and extremely low blood counts. On transplant day, our previously collected stem cells are returned to us and eventually begin rebuilding the bone marrow and producing new red blood cells, white blood cells, and platelets. We call it a stem cell transplant because those stem cells are transplanted back into our bodies, but their real job is to rescue our bone marrow after the high-dose chemotherapy.

The Drug Leaves. What About the Damage?

Mitochondria are like tiny power stations inside our cells, helping produce the energy our bodies need. Melphalan damages cells and can disrupt their mitochondria, potentially triggering cell death. That's exactly what we want it to do to myeloma cells. Unfortunately, healthy cells can get caught in the crossfire too.

Melphalan itself doesn't stay in the body very long, but that doesn't mean all of its effects disappear when the drug does. Think of a sunburn. The sun exposure may have ended hours ago, but the damage to your skin remains. Chemotherapy is much more complicated, but the idea is similar.

Some damaged cells die, while others survive but may not function as well as before. Researchers call one of these changes cellular senescence, where a cell remains alive but no longer grows or functions normally. Scientists are also studying how chemotherapy affects our mitochondria and whether these cellular changes may play a part in why some people feel like treatment aged them.

This doesn't mean every transplant survivor has permanently damaged mitochondria. It simply means that what happens to our cells during treatment may last longer than the chemotherapy itself.

Why am I still so tired?

Not two weeks after transplant.

Not two months.

Sometimes years later.

If mitochondria aren't working efficiently, cells may have more difficulty producing and managing the energy the body needs. Mitochondrial dysfunction has therefore become one area researchers are investigating in cancer-related fatigue and survivorship.

But we have to be careful here.

We cannot say that mitochondrial damage from melphalan is the reason someone is fatigued years after transplant.

Post-transplant fatigue can have many causes, including anemia, medications, chronic inflammation, pain, poor sleep, hormonal changes, loss of muscle mass, deconditioning, infection, nutritional problems, the underlying cancer, and other medical conditions.

Mitochondrial dysfunction may be one piece of a much bigger puzzle.

Mitochondria and Our Muscles

Mitochondria are particularly important in muscle because muscles require a tremendous amount of energy.

When mitochondrial function is impaired, it can be associated with things like reduced endurance, exercise intolerance, muscle weakness, and slower physical recovery.

Sound familiar?

Again, that doesn't prove melphalan caused someone's muscle weakness years later. There are plenty of other possible causes, but it does help explain why researchers are interested in mitochondria when studying long-term cancer-treatment fatigue and physical decline.

"I feel like treatment aged me."

There may actually be some science behind that feeling.

Intensive chemotherapy creates enormous stress on the body. It damages rapidly dividing cells, forces tissues to rebuild, and can contribute to processes associated with biological aging, including cellular senescence and changes in mitochondrial function.

Researchers are beginning to look more closely at whether cancer treatment can actually accelerate the body's aging process. That doesn't mean receiving melphalan suddenly makes you ten years older, but intensive chemotherapy puts an enormous amount of stress on our cells and tissues. This may help explain why some people come out of treatment feeling as if their bodies have aged much faster than the calendar suggests they should have. So, when a patient says, "I feel like treatment aged me," there may actually be some science behind that feeling.

What About the Long-Term Risks We Already Know About?

High-dose melphalan has known potential late effects. One of the most serious is the increased risk of secondary blood cancers, particularly myelodysplastic syndrome (MDS) and acute myeloid leukemia (AML). These can develop years after treatment.

Some patients can also experience prolonged or persistent problems with blood counts or organ function after intensive therapy, although the cause may involve more than melphalan alone.

Melphalan can also affect other parts of the body. In rare cases, it has been linked to lung damage, while kidney and liver function are usually monitored closely during treatment and afterward. Neuropathy is a little different and worth explaining because although it is common among myeloma patients, melphalan may not always be the cause.

Numbness, tingling, and burning in the hands and feet are certainly familiar to many myeloma patients, but melphalan isn't usually the first drug we blame. Other myeloma treatments—particularly drugs such as bortezomib—are much better known for causing peripheral neuropathy. The disease itself and other medical conditions can also contribute.

When we've been through several different drugs plus a transplant, figuring out exactly which treatment caused a symptom isn't always easy.

But Aren't Mitochondria Able to Repair Themselves?

Thankfully, our cells have ways of cleaning up and recovering from some of this damage. One of those natural processes is mitophagy, the cell's own housekeeping system. It recognizes mitochondria that have become damaged or aren't working properly and removes them, helping the cell get rid of what is no longer useful or healthy.

Our cells also have a way of making new mitochondria, called mitochondrial biogenesis. In simple terms, the body can replace some of the mitochondria that have been damaged with new ones. This means that mitochondrial damage from chemotherapy doesn't necessarily last forever. Our bodies continue working to clean up, repair, replace, and adapt long after treatment is over. It may also help explain why recovery from a stem cell transplant can take much longer than we expect. Even years later, the body may still be adjusting and recovering from everything it went through.

Can We Improve Mitochondrial Health?

There isn't a magic "mitochondria reset button" after transplant.

However, several things associated with overall metabolic and mitochondrial health are also the same boring things our doctors keep telling us to do.

When medically appropriate, they include:

• Gradually increasing physical activity.
• Resistance or strength exercise
• Eating adequate protein and balanced nutrition
• Getting good-quality sleep
• Managing other health conditions
• Avoiding smoking
• Discussing persistent fatigue, weakness, or exercise intolerance with the medical team

Exercise is particularly interesting because physical activity can stimulate mitochondrial biogenesis and improve the body's ability to produce and use energy.

Of course, "just exercise" isn't very helpful advice when someone is dealing with severe cancer-related fatigue. Activity has to match the person's health, abilities, blood counts, bone health, and recovery stage.

And please be cautious with products marketed as "mitochondrial support." A supplement labeled with the word "mitochondria" on the bottle doesn't mean it has been proven to repair chemotherapy-induced damage. Supplements can also interact with cancer treatments and other medications.

Talk to your medical team before taking them.

What Researchers Still Don't Know

This may be the most important part of this entire discussion.

We know quite a bit about how melphalan damages cells during treatment.

We know mitochondria participate in some of those cellular pathways.

We also know mitochondrial dysfunction, oxidative stress, cellular senescence, inflammation, and biological aging are being studied in cancer survivors.

What we don't yet know is exactly how much persistent mitochondrial dysfunction from high-dose melphalan contributes to a particular person's symptoms five, ten, or twenty years after transplant. That connection is still being investigated, and I think that's an important distinction.

There is a difference between saying, "Scientists are studying whether this contributes to long-term symptoms" and saying, "Melphalan damaged your mitochondria, and that's why you're tired six years later."

Science isn't at the second statement yet.

Surviving Treatment Is Only Part of the Story

High-dose melphalan and a stem cell transplant have given many myeloma patients years they may not have had otherwise. For some of us, it has meant a long and deep remission and more time with the people we love. But making it through transplant doesn't mean everything suddenly goes back to normal. Treatment may be over, but our bodies can continue dealing with the effects long after transplant day.

Cancer survivorship research also needs to ask what happens to the body five, ten, fifteen, and twenty years after intensive treatment.

Why do some people bounce back while others struggle with fatigue?

Why does one person regain their strength while another never quite returns to their old baseline?

How much does it come from cancer?

How much does it come from chemotherapy?

How much comes from aging, inflammation, medications, immune changes, mitochondrial health, or a combination of all of them?

We still don't have all those answers.

The melphalan may have left our bodies years ago. Our stem cells rebuilt our bone marrow, our hair grew back, and our blood counts eventually recovered. We went from counting the days after transplant to celebrating the years since it happened. But that doesn't mean our bodies forgot what they went through. Researchers are still learning just how long some of the changes caused by such intense treatment may last and what they could mean for us years down the road.

The treatment ends. Survivorship doesn't.

 

 

A Note About Research

Some of what we know about the long-term effects of chemotherapy is well established, while research into mitochondrial dysfunction, cellular aging, and long-term fatigue after cancer treatment is still developing. This article is meant to help explain what researchers are learning, not to suggest that mitochondrial damage is the cause of every symptom someone experiences after a stem cell transplant.

Resources & Further Reading

National Cancer Institute (NCI)
International Myeloma Foundation (IMF)
Multiple Myeloma Research Foundation (MMRF)
Blood Cancer United
PubMed — National Library of Medicine

Research & Further Reading

Shafqat S, et al. “The Achilles' Heel of Cancer Survivors: Fundamentals of Accelerated Cellular Senescence.” Journal of Clinical Investigation, 2022. https://www.jci.org/articles/view/158452

Wang S, et al. “Accelerated Aging in Cancer Survivors: Cellular Senescence, Frailty, and Possible Opportunities for Interventions.” International Journal of Molecular Sciences, 2024. https://pubmed.ncbi.nlm.nih.gov/38542292/.

Wang S, et al. “Cancer Treatment-Induced Accelerated Aging in Cancer Survivors: Biology and Assessment.” Cancers, 2021. https://pubmed.ncbi.nlm.nih.gov/33498754/

Filler K, et al. “Association of Mitochondrial Dysfunction and Fatigue: A Review of the Literature.” BBA Clinical, 2014. https://pmc.ncbi.nlm.nih.gov/articles/PMC4136529/

Saligan LN, et al. “The Biology of Cancer-Related Fatigue: A Review of the Literature.” Supportive Care in Cancer, 2015. https://pmc.ncbi.nlm.nih.gov/articles/PMC4484308/

My Heart Aches: Navigating the Pain of Losing My Second Mom

 

Holidays can bring both happiness and deep sadness. They remind us of the joy of being with loved ones, but also make us feel the pain of those who are gone. Some people have time to prepare for holidays without someone special, while others face that loss right in the middle of the season. My heart aches for my ex-husband, his family, and my children as we grieve the loss of my "ex-mother-in-law", who passed away just days before Christmas.

Carolyn was a truly remarkable woman. One of my favorite memories is a long, 14-hour drive we took together, just the two of us. As we drove, we talked about life, family, love, and what matters most. During that quiet time, I promised her I would never stop loving her son, Scott, and that I would always be there for him, no matter what happened. She told me how much that meant to her, and I felt the importance of that moment. I meant that promise when Scott and I said our wedding vows 40 years ago. I meant it when our marriage ended. And I still mean it today, because love that deep does not just disappear.

Our family has changed, but the love has stayed strong. Scott and I have stayed close friends, even after being divorced for 13 years. I remarried, and from the start, my husband understood that my children and their father would always be important to me. That understanding made my love for Lance even stronger. He knew we came as a package. What we have now is a family that may be different, but it is built on respect, compassion, and commitment. It works for us, and in its own way, it is a win for everyone.

Carolyn may not have fully understood our family situation, but she accepted it, and that meant a lot. She never held my new marriage against me. Instead, she welcomed my husband, Lance, into the family, which he still finds hard to believe. His own family did not accept me, and I am estranged from my own family, so Lance and I were left without the mothers we needed. But my ex-mother-in-law showed us kindness instead of judgment. She kept loving me as a daughter, reminding me that family is not just about blood, but about the people who choose to stay.

Carolyn really was a remarkable woman, and loving her for more than forty years has been one of the greatest gifts of my life. She often showed me what grace looks like in everyday life, even without saying a word. She made people feel accepted, no matter their flaws or past, and she did it with a quiet strength that stayed with me. Our relationship was not perfect—no real relationship is. But even when we disagreed, she never stopped loving me, and that meant more than she knew.

She supported Scott and me in a way I had never known before: steady, respectful, and selfless. I know she had her own opinions about the changes I made in her family, but she always chose love over control. She accepted those changes without resistance or judgment. When she gave advice, it was because we asked for it, and when she stayed quiet, it was thoughtful and kind. That rare support shaped me as a mother. Because of Carolyn, I learned to stand beside my children, trust them, and love them without conditions.

I am so grateful for my wonderful adult children, and I know Carolyn was very proud to be their grandmother. Maybe she stayed close to me after Scott, and I divorced because she loved them deeply. Maybe she remembered the promise I made to always love her son and knew I meant it. Or maybe it was just who she was—a woman with a heart big enough for complexity, change, and forgiveness. She never explained her reasons, never wanted recognition, and never made me feel like I had to earn my place. Instead, she gave me love, respect, and a sense of belonging. I will always be grateful that she allowed me to remain part of the family, and I will carry her example with me for the rest of my life.

Her death is hard for everyone, but few people really know how hard it is for me. I feel like an orphan. My pain and grief for her are as real and deep as any daughter’s grief for her mother. Our relationship never fit a simple title. Ex-mother-in-law sounds distant and cold, which is nothing like what she was to me. Legally, I can’t call her Mom anymore, but in my heart, she has always been my mom. She was, and always will be, my mom.

Carolyn was a woman of strength—quiet strength. The kind that didn’t demand attention, but held everything together. She was a true matriarch, the backbone of the family. She worked hard her entire life and loved her family with that same fierce devotion. She was someone my children could look up to, but just as importantly, she was someone I looked up to—even though, by height alone, I stood above her.

She loved our children unconditionally and with pride. She was always there for them, always involved. She celebrated their successes as if they were her own. I know how proud she was when my daughter graduated from Purdue and when she made Carolyn a great-grandmother. I am so grateful that my children grew into responsible, loving, and giving adults, and I know that didn’t happen by accident. Their grandmother helped shape them into the adults they are today, people everyone is proud of.

My heart aches with the loss of my mom, who was not my flesh and blood, but was my mother in every way that mattered. Losing a mother is unlike any other loss. It goes deeper than words and touches places we didn’t know existed. Carolyn made me feel safe and understood, both in my proud moments and my flaws. With her gone, the world feels less steady, as if something important is missing. No matter how old we are, part of us will always long for our mother’s presence, her voice, and her reassurance. I still long for Carolyn’s.

Grief for a mother is not a straight path. It comes in waves, sometimes gentle and sometimes overwhelming. Ordinary moments can suddenly feel heavy: a holiday, a memory, or a simple question I wish I could ask her. Even when a relationship is complicated, the loss brings a special kind of pain. I grieve not only who she was, but also what she stood for: home, history, belonging, and unconditional love.

Even with this loss, her lasting influence remains. Her lessons, values, and love live on through us. We carry her in the way we love, care for, and support others. A mother may leave this world, but her presence never really goes away. She becomes part of who we are, quietly guiding and shaping us, even when she is gone.

Carolyn was that woman in my life.

My heart will always ache.

I love you, "Mom."

Bleeding Wallets: The High Cost of Blood Cancer Treatment Compared to Other Cancers

The financial burden of cancer treatment is a significant concern for patients and their families; among all the various types of cancer, blood cancers—particularly multiple myeloma and leukemia—surface as some of the most expensive to treat. The costs of treating blood cancers go beyond the initial diagnosis and treatment phases, resulting in excessive healthcare expenditures that many families find hard to manage.

The average cost of blood cancer treatment exceeds $150,000 in the initial year, with acute leukemia patients incurring the highest expenses across all age groups. On average, these patients can accumulate costs nearing $450,000 in their first year of treatment. Patients diagnosed with multiple myeloma also exceed the average cost, totaling just over $200,000 in the first year.

Comparing Costs Across Cancer Types

When evaluating the costs of treating different types of cancer, blood cancers, particularly multiple myeloma, consistently emerge as the most expensive. This is mainly due to their unique treatment requirements, which often involve complex and ongoing therapies. However, lung and thoracic cancers have the highest annual costs. Lung/thoracic cancer has high total yearly costs, often with shorter or less complicated treatment timelines. At the same time, multiple myeloma is the most expensive cancer to treat annually per patient. It is important to note that the nature of blood cancer treatments, including advanced therapy protocols, significantly contributes to higher overall treatment costs.

High Initial Costs

Blood cancer treatments are generally more expensive when compared to other cancer types. For instance, patients newly diagnosed with multiple myeloma can incur costs exceeding $200,000 within the first year of treatment. This expense is primarily because the treatment regimens are complex and often require a combination of therapies. There is a need for specialized care and frequent monitoring during the initial treatment phase. The costs of medications, such as maintenance lenalidomide, are high. Moreover, the high initial costs are just the beginning. The financial implications often extend into subsequent years, amplifying the burden on patients and their families.

“Unlike [other hematologic cancers] such as large B-cell lymphoma or Hodgkin lymphoma, where you give 6 months of treatment and you’re done for most patients, in myeloma, treatment is pretty much lifelong, continuous therapy, for 7 or 8 years or more, which is the median survival of the disease,” said Dr. Rajkumar. “And we don’t use these drugs alone; we use them in combination, which then increases the cost even more…. Quadruplets are up-and-coming options now, very similar to R-CHOP [rituximab, cyclophosphamide, doxorubicin hydrochloride, vincristine, and prednisone] for the cure [of non-Hodgkin lymphoma]. You are talking about a four-drug combination of monoclonal antibodies costing between $350,000 and $600,000 for 1 year of treatment.” (Cavallo, How to Treat Patients With Multiple Myeloma Cost-Effectively Without Compromising Outcome)

Ongoing Treatment and Relapses

One of the staggering realities of myeloma treatment is that nearly all patients will experience relapses or develop cancers that become refractory to existing therapies. This inevitability leads to some critical factors. Multiple myeloma patients often require indefinite, long-term maintenance therapy, which can include a combination of doublet or triplet therapies. This ongoing treatment approach is necessary to manage the disease. Still, it amplifies financial toxicity, as patients must bear additional costs for extended periods.

Patients diagnosed with acute leukemia often face significant out-of-pocket expenses, leading to immediate financial burdens. In contrast, those diagnosed with multiple myeloma tend to accumulate significantly higher total out-of-pocket costs over a three-year period. Patients' higher costs can often be traced back to numerous relapses and a range of treatment plans.

The Emotional and Financial Toll

Beyond the straightforward financial analysis, the strain of high medical costs can have profound emotional and psychological implications for patients and their families. Prolonged treatments can lead to high levels of stress and anxiety related to financial issues and a decline in quality of life due to ongoing health problems and the side effects of treatment. Financial limitations, not just medical factors, may significantly influence care decisions.

These factors underline the importance of addressing the clinical aspects of cancer care and the financial and psychological challenges arising from the high treatment costs. The costs associated with blood cancer treatment, particularly for diseases like multiple myeloma and leukemia, reflect a complex landscape where financial toxicity is an almost unavoidable reality. Patients often bear the brunt of high initial expenses and ongoing treatment costs, which accumulate over the years, leading to increased financial strain and emotional distress. As healthcare continues to evolve, it is imperative for stakeholders to address these spiraling costs and to ensure that financial barriers do not impede access to crucial, life-saving therapies. Understanding the financial impact of blood cancers—especially compared to other cancers—highlights an urgent need for systemic changes to improve patient outcomes and alleviate economic burdens in the future.

References

Cavallo, J. (2020, August 25). How to treat patients with multiple myeloma cost-effectively without compromising outcome. The ASCO Post.

Dieguez, G., Ferro, C., & Rotter, D. (2018, October). The cost burden of blood cancer care. Leukemia and Lymphoma Society.

Team, R. (2024, February 1). The true cost of multiple myeloma. Resolve Wordmark.

Shielding Myeloma Warriors: 7 Strategies for a Safer Flu and COVID Season

Flu and COVID-19 can be serious for anyone, but for people living with multiple myeloma, respiratory virus season deserves extra attention. Myeloma itself can weaken the immune system, and some treatments can further reduce the body's ability to fight infection.

That doesn't mean you have to spend the season afraid to leave your home. A few practical precautions, along with guidance from your healthcare team, can help reduce your risk while allowing you to continue living your life.

Here are seven strategies to consider during flu and COVID season.

1. Talk to Your Healthcare Team About Vaccines

Vaccination remains an important tool for reducing the risk of severe illness from influenza and COVID-19.

Because myeloma and its treatments can affect how strongly the immune system responds to vaccines, talk with your oncology team about which vaccines are appropriate and the best timing for receiving them. This can be particularly important around treatments such as stem cell transplantation, CAR-T therapy, or other therapies that significantly affect immune function.

Your healthcare provider can also tell you whether additional or updated vaccine doses are recommended based on your treatment and current health.

2. Know the Symptoms—and Act Early

Flu and COVID symptoms can overlap and may include fever or chills, cough, sore throat, congestion, fatigue, body aches, headache, and sometimes shortness of breath.

People with weakened immune systems may not always develop the "classic" symptoms of infection. For example, the absence of a high fever doesn't necessarily mean an infection isn't serious.

If you develop symptoms or know you've been exposed to influenza or COVID-19, contact your healthcare team promptly. Timing matters because antiviral medications for influenza and COVID-19 generally work best when started early.

Your oncology team can also check for possible interactions between antiviral medications and your cancer treatments or other prescriptions.

3. Practice Good Hygiene

Simple precautions can still make a difference.

Wash your hands regularly with soap and water, especially after being in public places and before eating. Alcohol-based hand sanitizer is a useful alternative when soap and water aren't available.

Try to avoid touching your eyes, nose, and mouth with unwashed hands. Regularly cleaning frequently touched surfaces can also be helpful, particularly when someone in the household is sick.

Because influenza and COVID primarily spread through respiratory particles, good ventilation and cleaner indoor air are also important tools for reducing exposure.

4. Be Strategic About Crowds and Sick Contacts

Living with myeloma doesn't necessarily mean avoiding every public place. Instead, think about your individual risk and the environment you're entering.

During periods of high respiratory-virus activity, consider avoiding close contact with people who are sick and limiting time in crowded, poorly ventilated indoor spaces.

A well-fitting, high-quality mask can provide another layer of protection in higher-risk situations such as crowded stores, airports, public transportation, medical facilities, or gatherings where you don't know whether others are ill.

And don't feel guilty about asking someone who is sick to postpone a visit. Protecting your health is reason enough.

5. Have a Plan Before You Get Sick

The middle of an illness isn't the ideal time to figure out what you need.

Keep an adequate supply of your regular medications and basic necessities at home. Consider having masks, a thermometer, hand sanitizer, and COVID tests available as well.

More importantly, know who to call and what to do if symptoms begin. Ask your oncology team ahead of time whether they want you to contact their office immediately if you develop a fever, test positive for COVID, or have been exposed to influenza.

Having a plan can eliminate uncertainty when you're already feeling sick.

6. Pay Attention to Your Breathing—and Other Warning Signs

Respiratory infections can become serious more quickly in people whose immune systems are compromised.

Contact your healthcare provider if you develop new or worsening symptoms. Severe difficulty breathing, persistent chest pain or pressure, new confusion, inability to stay awake, or other signs of a medical emergency require immediate medical attention.

Myeloma patients should also pay attention to dehydration. Fever, vomiting, diarrhea, and poor fluid intake can be particularly concerning when kidney function is already compromised.

Don't assume that a worsening symptom is "just the flu." When you're living with myeloma, it's better to ask.

7. Support Your Immune System—Without Falling for "Immune-Boosting" Claims

There is no food, vitamin, herb, or supplement that can magically "boost" an immune system affected by multiple myeloma.

What you can do is support your overall health.

Eating a balanced diet, getting appropriate physical activity, sleeping adequately, staying hydrated, managing other health conditions, and following your prescribed treatment plan all contribute to your body's ability to handle illness.

Before taking vitamins, herbal products, or supplements, talk with your healthcare team. Some supplements can interact with cancer medications or may not be appropriate for people with kidney problems or other medical conditions.

For some patients with recurrent or severe infections, physicians may recommend additional medical strategies based on immune function and treatment history. Those decisions should be individualized.

Protection Without Isolation

Living with multiple myeloma already requires enough adjustments. Protecting yourself during flu and COVID season shouldn't mean putting your entire life on hold.

Think of infection prevention as layers of protection rather than one perfect solution: appropriate vaccination, cleaner air, good hand hygiene, avoiding close contact with people who are sick, masking when circumstances warrant it, recognizing symptoms early, and having a plan with your healthcare team.

Perhaps most importantly, don't wait until you're seriously ill to make that phone call.

When your immune system is compromised, early communication and early treatment can matter.

You can't eliminate every risk. But you can understand those risks, prepare for them, and make informed choices that allow you to protect your health while continuing to live your life.

More than Family: The Incredible Bond and Lifelong Lessons of Cousins

Cousins are like having built-in best friends who are there for you through thick and thin. They're not just part of the family; they're the ones who uniquely understand you. Sometimes, our connection with our cousins can be stronger than with our siblings because of this unique mix of love and shared experiences. What's great about cousins is that they bring a fresh perspective to the table - coming from different backgrounds, they can open our minds to new ideas and ways of seeing the world. This diversity adds so much spice to our lives, helping us grow in empathy, strength, and acceptance. While we often focus on our immediate family circle, let's recognize the treasure trove of love and friendship that cousins can bring into our lives.

Cousins are like stars in the same sky, distant but always there.

Cousins bring a unique blend of family ties and friendship that makes them special. They go beyond just being relatives and become our lifelong companions, sharing in our family stories and understanding our unique family dynamics. Whether lending a hand in times of need, offering a listening ear during challenging moments, or simply being there to celebrate life's milestones, cousins provide unwavering support and a sense of belonging. From childhood to adulthood, their presence in our lives adds richness and depth to our experiences, creating lasting memories and cherished, invaluable relationships.

Cousin relationships are extraordinary and can grow into lasting friendships that enrich our social and emotional well-being. The trust, loyalty, and companionship that cousins share can be a cornerstone of support and understanding throughout our lives. Through shared experiences, memories, and traditions, cousins form a unique bond that can shape our values and perspectives. What's especially remarkable is how cousins from diverse backgrounds and life paths can offer each other valuable insights and life lessons. From empathy to resilience, cousins have the power to inspire and teach each other, making this relationship a source of growth and enrichment.

Cousins play a crucial role in our lives as they are family members and carriers of our ancestors' legacy. They embody our roots, history, and heritage as powerful reminders of our origins. By exemplifying the values and traditions passed down through generations, cousins motivate us to uphold and cherish our familial heritage, fostering a deep sense of pride, inner fortitude, and resilience. In essence, cousins are a vital connection to our past, guiding us toward a promising future filled with rich traditions and enduring values. Moreover, they offer us a profound sense of belonging within a supportive network, standing by us through thick and thin. In a world often marked by feelings of isolation, having cousins who are ever-present and unwavering in their support provides us with a comforting stability that brightens even the darkest days.

Cousins are built-in friends who sneakily teach us all the essential life lessons we need while having fun hanging out. They're more than just family; they're mentors in communication, teamwork, and problem-solving, equipping us with skills that come in handy off the playground, too. As cousins share jokes, secrets, and countless memories, their bond can blossom into lifelong friendships that sprinkle our lives with joy and emotional support. Research even backs it up - these connections don't just bring a smile to our faces; they boost our mental well-being and overall happiness. So, cheers to our cousins for being the unsung heroes of our social and emotional growth, giving us a solid foundation of love and security that stays with us for years.

In wrapping up, it becomes evident that cousins hold a special place in our lives, extending far beyond mere family ties. They are the ones who stand by us, offer guidance, and become our trusted companions in the journey of life. Their impact on our growth and character development is profound, molding us into more resilient, compassionate, and understanding individuals. Therefore, let us embrace and celebrate our unique connection with our cousins, recognizing the invaluable support, history, and wisdom they bring into our lives. So, the next time we gather with them, let's take a moment to honor the beautiful bond and appreciate their profound influence on shaping who we are today. After all, cousins are a cherished gift that continues to enrich our lives in countless ways.

My dear, cousins. you are greatly missed.