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.