Instead of heading to campus, I’m heading to Miami, as I do every four weeks, for treatment.

Instead of me, my postdoc will be greeting a lecture hall full of undergraduate students this afternoon. It’s disappointing that my life is still too disrupted to teach a full-semester course, but I’m grateful that my university offers modified duties for medical situations—and that my postdoc has this opportunity for growth. (And the students are lucky to have her!)

I’m also grateful for the flexibility this gives me: to travel for treatment every month, and to adjust when illness or travel disruptions inevitably interfere with carefully made plans. And I can’t underestimate the value of not carrying the time pressure of teaching a full course while also managing a lab of 12 employees and graduate students and all of our research projects.

Still, I feel a little melancholy sensing the back-to-school energy around me and not being fully part of it. For 40 of my 47 years, I’ve gone back to school in the fall—as a student or a professor. There is something deeply ingrained in me about this time of year: the new schedules, new students, new ideas, and sense of beginning again.

And I will go back this fall. Just on my own schedule, and in a different way.

At the same time, I’m carrying with me something I haven’t felt this strongly in a long time: the joy of feeling back to myself.

Last week, I had the capacity to lead my lab’s annual retreat. I started Dayer Lab retreats five years ago as a way to bring my team together—to connect, grow, make progress on our writing, and have some space to breathe and reset. In January, as I began cancer treatment, I had to cancel our retreat. My team understood, of course, but it felt like one more piece of my life that cancer had put on hold.

So returning to it last week was particularly sweet. Remote team members flew or drove more than eight hours from across the country, and alumni returned to reconnect. But what meant the most to me was realizing that I had the energy and mental space to show up fully as a professor and mentor again.

My greatest joy came from watching my team support one another through writing and other challenges, celebrate each other’s strengths, lead engaging sessions and discussions, share stories and endless laughs, cook delicious meals, eagerly learn from one another, and reflect on what our time together meant to them.

And somewhere in the midst of watching all of that, I realized how much had changed in me, too.

Over the weekend, following the retreat, I noticed that joy and energy everywhere. A heaviness has lifted. I fully enjoy being with friends and coworkers again. I want to be in social situations again. I’m not just getting through things; I’m fully present for them.

Perhaps most remarkably, I’m looking toward the future again. I’m making plans and committing to things without the persistent fear that I won’t be there for them.

I’m exploring the possibility of offering a new course on Nature and Mental Health, which has me giddy with excitement. I’m co-leading my son’s Cub Scout den, with wonderfully understanding co-leaders who know I’ll miss some meetings. I’m teaching yoga a few times a month—something I can do because my treatments don’t require weekend travel, and because helping other people find calm helps me, too.

As the lingering depressive mood has lifted, I’ve also needed less sleep. I often wake before my alarm after seven or eight hours. After two years of carrying the psychological burden of cancer, the changes in my sleep, outlook, energy, and desire to socialize felt so unfamiliar that I actually explored whether I might be experiencing undiagnosed hypomania.

Virtually all the signs point to no. Instead, I think I am healing. I am coming back to myself.

It’s a self that has changed, is changing, and will keep changing through this journey with myeloma. But at her core, she is still the me I have always known.

And it feels so good to welcome her home with open arms.

Tomorrow, while my colleagues head back to their classrooms for all those Tuesday/Thursday classes, I’ll head back to the lab—the other lab—to have my blood tested to see if my cancer levels are undectectable yet, to see my myeloma specialist, and to spend the afternoon in the infusion center.

This is my education now. A strange new school full of lessons I never signed up to learn, one that doesn’t have an office of admissions anywhere.

So this fall, I may not be going back to school in quite the way I have for 40 years.

But I am going back. And, even more importantly, I am coming back to myself.

*****

If you care to contribute to my cancer treatment travel fund on Go Fund Me or Venmo, I would be deeply grateful.

That’s a lot easier when treatment appears to be working, and my anxious mind can rest. And that’s just what happened this month.

My clonal protein level measured a decline. What a relief, after my concern last month that the numbers had no measurable change! I’m now down to an M-spike of 0.1 from a start at 3.0 in January.

Inching towards undetectable — a place everyone in my trial has reached on this treatment. The median time for the first 15 patients was 7 months (range 5-13 months). My last measure was taken at 6.5 months since starting treatment. Regardless of when I reach this milestone, I will continue treatment for 2 years total, as myeloma, found in the blood and bone marrow, is challenging to fully wipe out, even if it can’t be detected with the current detection tools.

I continue to be immunocompromised from my immunotherapy treatment, with all of my antibody levels (other than IgG that can be replaced with an IV) down to nothing. We finally found a solution for the recurrent urinary tract infections that were plaguing me. I now have Macrobid for postcoital prophylaxis. Yes, I tried lots of other approaches before adding another medication to my pill box. This is added to the typical for my trial propylactic antibiotics for pneumonia, antivirals for shingles, and baby aspirin to prevent stroke.

But, it’s summer. And disease levels are low, and there’s so much that can be done outside. Party time for the immunocompromised.

Highlights this month include:

Teaching yoga at Floyd Fest and earning free tickets for Shannon and me to enjoy all the music. My kids even joined us a couple days and played music and sang during the open mic in the Kids’ Universe.

My colleague and friend from Virginia Tech joined me in Miami for treatment. We visited the famous, 100 year-old Venetian Pool in Coral Gables on the day before my treatment. Finding joy in monthly trips for treatment makes them bearable.

My kids and I headed to the beach in North Carolina, rather than our family’s more expensive and too-far-away trip to the Adirondacks. The beach is our happy place, where we can just relax and be. Walking, boogie boarding, shark’s tooth hunting, bird watching, shelling, reading.... Little did we know though, it would become a sea turtle dreamland vacation. We caught loggerhead sea turtle hatchlings making their journey from their nest to the sea. Magical!

And, one mishap:

I smashed two fingers under a 35lb weigh in the rack at the gym. Thankfully, they weren’t broken, which likely would’ve been the case if I’d let my myeloma get to the point of weakening bones from bone lesions. I’m still recovering though and struggling with an aching right hand. It’s put a kink in my weight lifting, but not my spirit.

And, on that note, time to stop stretching my fingers with typing and head to the beach with the kids as the rain has let up.

If you care to contribute to my cancer treatment travel fund on Go Fund Me or Venmo, I would be deeply grateful.

This month, you didn’t hear from me.

Almost two weeks have passed since treatment. It is much easier to write about good news than disappointing news, but finally I decided to write because I have committed to documenting my journey — both good and bad. What made it harder was that, on treatment day, my doctor said we might see my clonal protein levels become undetectable this month. I was so hopeful.

But he was wrong.

When my results arrived a few days later than usual (likely due to the holiday, but still building up the anticipation), they showed that my M-spike was still at the same level as last month: 0.2g/dL. That is still remarkable when it started at 3.0g/dL. But it wasn’t the result I had been hoping for.

I had already been warned that the rapid decline we saw initially would probably slow. Regardless of speed of response, I still have to undergo this monthly treatment for two years. But I wasn’t ready for the progress to be unmeasurable. The medically anxious part of my brain immediately reared its head, whispering to me:

“Maybe the treatment has stopped working for you.”

“Maybe you exercised too hard this month and somehow interfered with it.”

“Maybe this is as far as you are going to get.”

I spoke with the clinical trial nurse. She told me not to worry. She believes I will continue toward a complete response and ultimately MRD negativity—the best outcome a person with myeloma can hope for.

Again, the message is be patient. But patience is not easy when your life is on the line.

The past few months have been so good. I have settled into a rhythm with treatment, the only tough side effects being the illnesses and infections that capitalize on my compromised immune system. I have watched the cancer steadily disappear from my blood and bone marrow. At the same time, my mood has elevated, my anxiety decreased, and my hope returned. Now I have to sit with uncertainty again.

I have passed the time with my kids. They are the best distraction.

We headed to an ornithological conference, and my kids have a ridiculous amount of excitement about joining me at academic conferences. You would think we were going on a Disney cruise or to an amusement park.

I told them that this year they could come only if one of them presented and earned a student travel grant to help cover the costs of attending, in addition to my attendance for work. And, believe it or not, my rising fourth grader showed up. He diligently studied the birds at our bird feeder, learned to enter data in a spreadsheet, worked on an abstract, and then learned how to use Canva to make a poster. He wrote out his talking points for when he discussed his poster, and then independently stood by his poster for 2 hours explaining his research to adults and answering all the questions they asked.

I am forever grateful to the Wilson Ornithological Society and the Association of Field Ornithologists for creating a conference environment where very young scientists are welcomed—and elementary school kids can win a travel grant and parents can receive caregiver grants that make it possible for them to participate.

My rising seventh grader, who is the life of the academic conference, chatting it up when any and all participants, teared up on the last night, “I don’t want the conference to be over. These people are so kind.” Yes, yes, they are.

I so appreciate my community, which keeps helping me carry on, whether the people in it realize they are doing so or not.

If you care to contribute to my cancer treatment travel fund on Go Fund Me or Venmo, I would be deeply grateful.

In 2012, before his book was published and became a best-seller, Deb and I invited Wallace J. Nichols to speak at a bird conservation meeting by the sea. At the time, his ideas felt almost radical. Ornithology was not exactly overflowing with conversations about mental wellbeing, nervous system regulation, or the emotional lives of people in relationship with nature. Our colleagues came together to talk about birds, their biology, and conservation. We already felt like we were pushing a boulder uphill to get them to talk about the human aspects of conservation.

Then J. came in with blue marbles. He handed them out, and suddenly a room full of ornithologists was holding little blue planets in their palms. Deb and I felt like we had pulled off a coup.

Now, more than a decade later, there is a robust and growing field of research on nature, birds, and mental wellbeing. My colleagues and I are part of that work. We have language now for what many people already knew in their bodies: birds matter. Water matters. Psychological ecosystem services. The living world is not just a backdrop for human life. It is part of how we endure, recover, and remember who we are.

For me, oceans have always meant something. Since I was a child, when I have trouble sleeping, or when I awake from a bad dream, I visualize the ocean. I put myself there in my mind: waves coming in, waves going out, the sun setting over the sea, and birds flying by. When really stressed, I sleep better with ocean sounds and they allow me to cope with my hospital stay at the start of the clinical trial. While I live in the mountains, far from the coast, I take my kids on vacations to the ocean regularly so we can find calm together.

In my early career, I was a marine biologist. At Duke University Marine Lab, I studied dolphins in North Carolina and the Florida Keys. I spent a summer in Grand Manan, New Brunswick, collecting my senior thesis data, watching a whale and seabird feeding ground from a cliff. Then I traveled to California where I studied sea otters. Later, I shifted to shorebirds and seabirds from marine mammals. I knew the ocean intellectually, scientifically, personally.

And yet, for the last twenty-five years since I left Hawaii, I have not snorkeled, even though at the time I considered staying in Hawaii to lead snorkeling and whale watching trips for others to enjoy. Somewhere along the line, I became anxious in the ocean. I loved it from shore. I loved it from boats. I loved it in memory. But being in it, really in it, with my face in the water and my body floating over depths I could not control, felt like too much.

That changed this weekend. I went to visit a colleague and his wife in the Keys for what I thought would be a relaxing weekend. It quickly became clear that “relaxing” meant hours on the ocean in a boat and snorkeling.

At first, I felt the old anxiety rise. The mask. The breathing. The deep water. The uncertainty below me. But then I remembered what I teach in yoga classes, what I study as a social scientist, what I tell my kids, what I tell myself on treatment days.

Feel the stress. Acknowledge it. Breathe. Let it melt away.

And then: bliss.

There were coral reefs beneath me in the Keys, bright and alive. There were parrot fish, porcupine fish, spiny lobsters, Goliath grouper, angel fish, rays moving through the water. There were even sharks. Nurse sharks, reef sharks. Just a part of the space I had entered, without a care about me.

Later, we moved into mangroves, and I watched the roots descend into the water like an architecture of life. Mangrove roots are nurseries, shelters, filters, protectors. They hold coastlines together. They raise young fish. They are not just trees standing at the edge of the sea. They are coated in sponges of all colors, anemones, crabs, oysters.

But the best part was simpler than all of that. It was floating with the waves and the fish. Not swimming hard. Not proving anything. Not identifying species or taking notes or doing the work of being a scientist. Just floating. Letting the waves rock me, in sync with the beautiful fish. Letting the ocean move my body without needing me to manage it.

That is blue mind.

That feeling came with me back to Miami for treatment.

Today, my appointments were delayed. I watched other people around me get stressed, understandably. Delays in cancer treatment centers can do that. Bodies are tired. People are scared. Everyone is carrying something.

But I felt regulated in a way that surprised me. I opened my computer and worked on a grant. I secured tickets for my August and September treatment trips. I looked out at palm trees. I accepted friendly hugs from doctors, nurses, and fellow patients in my trial. The day was punctuated not by panic, but by connection.

Even the injections are getting easier. At the beginning of this treatment, I had a whole routine. I braced myself. I prepared with my music, my stuffie, my hand hold, even the rubbing alcohol nearby in case I started to faint. I tried to control the experience because it felt enormous and invasive and strange. Now, more often, it doesn’t feel like more than a needle sliding under my skin – to take blood, to inject immunotherapy, or to start an IV for immunoglobulin.

It turns out that some things ease right in when you don’t resist so hard. The ocean reminded me of this lesson this weekend. The reef reminded me. The sharks reminded me. The mangrove roots reminded me. The waves reminded me as they rocked me gently among the fish.

We spend so much of life trying to hold ourselves up. Sometimes what we need is to be held, by water, by friends who become old friends almost immediately, by the rhythm of breath through a snorkel. Or, by the blue mind that is always there, waiting for us to return.

“I wish you water”, as J. Nichols used to say. May he rest in peace, which he taught us all to find.

If you wish to support my journey

Thank you to the nearly 100 people who have supported my cancer treatment travel. You’d be interested to know that coming down to Miami early to stay with friends on the Keys saved me money. My typical travel early in the week due to Tuesday treatment days triggers business travel airfares. Spending a weekend over brought the airfare down significantly. If only I had the time to do it every trip!

If you feel moved to contribute to my cancer treatment travel fund on Go Fund Me or Venmo, I would be deeply grateful. Every bit of support matters.

On Sunday, my kids headed to Camp Kesem—a camp for kids whose parents have cancer. As we drove toward camp in the Blue Ridge Mountains, my 12-year-old told me there’s not a day that goes by that he doesn’t worry about me, even though he knows my treatment is working.

Can you imagine carrying that kind of worry about your parent every day at age 12?

It brings me to tears.

Kids whose parents have cancer experience higher levels of anxiety, emotional isolation, depression, and feelings of hopelessness. They can also have lower self-esteem, more behavioral challenges, and more difficulty with social interactions. And yet, these kids often don’t voice their concerns. Many hold them in, not wanting to become one more burden for the parent who is already going through so much.

Camp Kesem was designed to meet children in exactly this place. Research shows that Kesem’s programs improve kids’ well-being, sense of belonging, emotional expression, coping skills, and confidence.

For my kids, I hope it is more than camp. I hope it is a place where they can exhale.

I hope they meet other kids who understand this strange and heavy thing without needing it explained. May they be silly, loud, brave, homesick, joyful, talkative, messy, and fully themselves. May they feel, even for a few days, that they are not alone in carrying their parent’s cancer—and that there are people ready to help them carry it.

Kids at Camp

Since my diagnosis, I have especially savored every moment with my kids. As a divorced parent who shares custody, 50% of their time has never felt like enough. But it felt even more insufficient when I realized my time with them could be cut short.

I savor family dinners, movie nights, reading together in bed, and the lightness of vacations. I also value being there when my kids are struggling. So this spring, when one of my kids was having a hard time, it was particularly painful not to be able to show up as quickly or as fully as I wanted.

And still, I am grateful they are finally in a place focused entirely on supporting them during my cancer journey.

The photos on Facebook are my only glimpses of their time there—no calls, texts, or letters allowed. My older kid, who jumped right into a game with the other campers at drop-off, is now jumping off lake floats, flying headfirst down the water slide, grabbing everyone’s attention at the campfire, and sitting in the front row laughing at the fashion show spoof.

My younger kid, who hung back and observed at drop-off, a little overwhelmed by the activity and new people, seems to have found his stride. I see him completing obstacles in the Color Olympics and making his hair into a mohawk with shaving cream on Messy Day.

What I can’t see in the Facebook posts are the bedtime chats in their cabins, when kids have a chance to share reflections from the day—or deeper worries and concerns from life at home with a parent who has cancer.

I also can’t see photos of the camp’s events that acknowledge the shared experience of all the campers and give kids a chance to tell their stories in a safe space, surrounded by peers who truly understand.

But even just seeing my kids happy after such a rough spring feels like an enormous relief. For months, the places I looked to for support seemed to bring us down instead. Seeing them laughing, playing, and being held by this community feels like the lifting of a huge weight off my shoulders.

Camp My-Kids-are-at-Kesem

It occurred to me on day two of my kids being at camp that a free, overnight camp is also a gift to the parents with cancer.

It is quiet time—not worrying about who is watching out for our kids while we are in cancer treatment, at endless doctors’ appointments, or simply trying to make it through another week. It is time for ourselves. Time with our partners. Time for paperwork. Time for chores left undone. Time to rest. Time, maybe, for a rejuvenating vacation.

I opted for a little of each, even though another infection grabbed me on Sunday night and tried to derail the bike trip part of my week. (I’m still struggling with how to live an immunecompromised life when I otherwise feel fine. My body keeps sending me reminders). Thankfully, getting on antibiotics quickly calmed the infection, and Shannon’s and my plans to enjoy wild West Virginia moved forward.

If you wish to support my journey

If you feel moved to contribute to my cancer treatment travel fund on Go Fund Me or Venmo, I would be deeply grateful. Every bit of support matters.

I’m so grateful to be able to share these latest M-spike results with you and to know that I’m not walking this road alone.

You will note that this measure of the cancerous protein in my blood is approaching zero after nearly 6 months of treatment. It halved again in the last month. After it hits zero, it will need to be confirmed a couple months later with another bone marrow biopsy (a strange kind of torture only blood cancer patients know). Still, I will likely continue treatment until it has been 2 years to ensure all cancerous cells are gone from every crack and crevice in my bone marrow, according to the clinical trial protocol. Then I will be monitored quarterly in Miami for 5 more years to ensure it doesn’t come back, and, if it does, we catch it quickly.

So it's still a long road ahead, but I will make it through this journey, with your support. Thank you. Hugs.

***********************************************************************************************************

If you care to contribute to my cancer treatment travel fund on Go Fund Me or Venmo, I would be deeply grateful.

With routine comes calm for the anxious mind. The uncertainty of treatment has transitioned into the familiar. Yet, I still try to travel for treatment with intentions, rather than expectations that I may not be able to control the outcome of.

This week, that approach served me well.

I left unsure whether I’d actually be treated. Again, I had caught an upper respiratory virus — this time from my kid — and while it was milder than the month before, it was still lingering because of my immune compromise. I was also still coughing because of my asthma. The medical team told me by phone on Friday that they thought they’d still be able to treat me, given the time since symptom onset and the fact that my symptoms were improving. But I didn’t know what they’d say when they saw me in person and heard my scratchy voice and cough.

And what about my labs? Would they show that my body was fighting too hard to have treatment?

I resolved that I was going to show up and see what happened. Worst case, I’d still get my IVIG and have an immune boost. Best case, I’d also be treated.

I also headed to the airport wondering whether it had been wise to book an afternoon flight out of my regional airport instead of a morning one. I had chosen the afternoon flight so I could spend the morning with my kids. I knew that flying in the afternoon in the summer carries more risk because of thunderstorms.

Still, I stayed calm as my plane out of Roanoke sat on the runway, waiting to take off for Charlotte through two ground stops for lightning. Then we turned around twice to let passengers off — an hour-plus process each time. I reminded myself that I could not control the weather or the other passengers. I was comforted by seeing several later flight options from Charlotte to Miami as I missed my connection. After five hours of sitting on the plane, we finally took off for Charlotte, and I ultimately arrived in Miami at 1 a.m.

I did learn a few things: always have a fully charged computer and phone when getting on a plane, even if it’s supposed to be a short flight. Bring a book. Maybe bring a portable power bank for my iPhone. I did none of these things this time. But I did take some much-needed naps while waiting on the plane.

In contrast to the chaos of the trip to Miami, treatment at the cancer center felt ordinary.

My day began with labs from my usual lab technician, who tells me each time, in her Cuban accent, “Atchlee, you are going to be all healthy soon. Everything is going to be OK. You are doing so well.” Her words of affirmation are always a salve as she draws my blood at the start of the day.

Dr. Landgren’s team checked in about my upper respiratory infection but had no concerns when I told them I had biked 45 miles on Sunday with ample energy. Landgren asked his typical, “What can I do for you?”

Today, without any acute issues of my own, I focused our conversation on my suggestion that his team could do more to support the mental health of clinical trial patients. I explained that, based on my own experience, conversations with others, and even scientific evidence, smoldering myeloma and clinical trials can create mental health challenges that are distinct from — and sometimes even greater than — those associated with active myeloma and standard-of-care treatment.

I suggested that having a social worker dedicated to supporting clinical trial patients could improve the patient experience.

He engaged deeply in our conversation and wanted to hear more about my perspective. He also reflected on the structural barriers in a hospital system with silos. Still, I felt heard, and I believe he will consider the suggestion. If I can help future patients struggle less than I have, then I have done well.

Finding my people

What’s my greatest fear, aside from being struck by a snake? Being alone. Calling out in fear or need and having no one answer.

This fear of being alone made signing up for treatment in a city where I knew no one even more terrifying. My partner, family, and friends traveled with me at first, but that wasn’t sustainable given their schedules and the cost. Thankfully, I am finding my people in Miami.

I am staying with a friend of a friend and her family in Coral Gables, close to the cancer center. When my flight was delayed yesterday, she made a plan to let me into the house late at night and offered to leave her phone on in case I ran into trouble and needed to call. In the morning, she welcomed me to Miami and offered to drive me to the hospital. I declined so she could work on her novel.

I now know the hospital staff: my favorite lab technician, my nurse practitioners, Dr. Landgren, who greets me with a hug, my massage therapist, and my CTU nurse — CTU being the comprehensive treatment unit for immunotherapy, chemotherapy, and IVs. They ask about my kids and the flight from Virginia, and they share their Miami tips and tricks.

Today, my network grew again.

The last couple of times I’ve had treatment, someone on the team has mentioned another woman traveling for treatment in my trial. When a woman my age rolled into the waiting room with a suitcase, I boldly asked if she was in the REVIVE trial. I called it!

We were fast friends, connected by our shared experience as smoldering myeloma patients, clinical trial travelers, and mothers committed to fighting for long lives with our kids. We exchanged phone numbers and parted ways for our appointments.

Later, she found me getting my infusion, and we talked for over an hour before she had to catch her flight. The massage therapist remarked that she thought we must be longtime friends. We will be now.

Crazy creatures for treatment day

Deb delivered again on treatment day with more playful texts of amazing sea creatures. Enjoy!

If you wish to support my journey

If you feel moved to contribute to my cancer treatment travel fund on Go Fund Me or Venmo, I would be deeply grateful. Every monthly trip from my regional airport in southwest Virginia to Miami, along with dog care, airport parking, Lyfts, and few meals, is nearly $1000.

So I’m going to bite off one piece at a time.

The first piece is the easiest as I have distance from it: How do you tell your kids you have cancer? When do you tell them? How much do you say?

I received advice early on that turned out to be right: tell them soon. Tell them clearly. Tell them before they piece it together on their own.

They will notice that you are going to the doctor more often. They will notice that you are tired. They will notice that you are distracted, or crying, or suddenly leaving the room to take phone calls. They will notice the whispered conversations. They will notice the questions other people ask you when they are standing right there, questions that put you in the impossible position of either scaring your kid or not telling the truth.

The hard part is that, in the beginning, there is often so much you don’t know yet.

The first time I had cancer, I didn’t know until after my appendix was removed. In that case, the treatment was already done by the time I had the diagnosis. It was unexpected, unbelievable and scary, but also comparatively simple: diagnosis after treatment.

My high risk smoldering myeloma diagnosis was different.

This time, there were questions. Tests. Travel. Possible trials to enter. Decisions. Uncertainty about treatment for over a year. And kids who needed enough information to trust me, but not so much information that I overwhelmed them.

The best advice I received was simple, but not easy:

Tell them the truth, but not too much.
Don’t scare them, but answer their questions.
Make sure they know they can come to you.
And, if you possibly can, work with a child life specialist.

That last part is the hidden secret.

Because I am still followed at Duke Cancer Center for my appendix cancer, I was able to connect with a child life specialist there. She was wonderful. She planned a remote activity for my kids, to save us a 7 hour round-trip to Duke, to help them understand what myeloma is. They made “blood” and various types of cells out of sugary treats to show what was happening in the body. She even made a PowerPoint presentation to walk them through it.

It was age-appropriate. It was concrete. It gave them something to do with their hands while they learned. The tastiness of the sugary learning materials left a positive association. And it gave me language I could keep using afterward.

She also helped me think through how to support them emotionally. One thing she emphasized was that kids should not be sent off to do their own research. They should not have to gather information from Google, friends, overheard conversations, or adults who may not know what to say. The goal is for them to feel that they can come to you with their questions. Even the scary ones. Especially the scary ones.

The next conundrum is: how do you support your kids while you are in treatment?

For me, some parts were logistically straightforward. When I traveled to Miami for treatment, my children stayed with their dad. We are divorced, and for once, the structure of that felt like a gift. Divorce can come with guilt about the impacts on kids of living in two homes, but in this case, they were already used to being with me half the week and with their dad half the week. We could shift the custody schedule around treatment, and my partner could come with me to support me while my kids were still supported.

But even when the logistics work, the emotional reality is harder.

I tried to cut back on work before I cut back on parenting. When I came home from treatment and needed to rest, recover, or deal with medical tasks, I tried to do those things during the school day. I took sick leave. I protected the hours when my kids were home as much as I could so I could present with them.

I was also deeply grateful for the friends who cooked for me. More than thirty meals arrived during the intense first couple months of treatment. That kind of help is not small. It meant I had one less thing to think about, draining my limited energy. When my children were home, I could spend more of what I had on them.

Still, there was one stretch that was especially hard. During my treatment initiation, I ended up being away much longer than expected. I was inpatient. Then I couldn’t come home when I thought I would because my liver was not doing well and, to make matters worse, a big snowstorm hit the East Coast, impacting flights. I had to be honest with my kids about why I was still gone. They latched on to the liver issues.

In the end, I was away for something like eighteen days straight. Normally, we are never apart for more than four days. Maybe a week at the very most.

They cried on the phone. They were scared. They missed me. My oldest was intensely worried. And when I finally came home, they were overjoyed.

For the next few treatment trips, I think they were afraid each time that I might not come back. They seem to be doing better with that fear now, but I wonder about the lasting impact. I wonder what it does to a child’s nervous system to have a parent disappear into treatment and not know exactly when she will return.

And then there is the guilt: how does a parent overcome the guilt of the impact of their cancer on their kids’ lives?

Guilt that my cancer may have contributed to my child’s fear or hypervigilance. Guilt that I was not fully there this spring when one of my kids began having a hard time. Guilt that it took time to find the right specialists. Guilt that things escalated while I was in the most intense part of treatment.

People often ask, “How can I help?”

And sometimes what I most want to say is: Help my child. Give him a break. Understand that he has a lot going on. See the whole context. Don’t interpret every hard behavior at face value. Remember that children carry stress in their bodies, in their behavior, in their ability to cope.

But that is a harder kind of help to ask for. It is easier to accept a casserole than to ask the world to be more patient with your child.

Over the past couple of months, since coming back from the most intense phase of treatment, I have made my kid’s needs my first priority. I have advocated. I have been trying to find solutions, supports, answers. But none of it is fast. None of it is simple. And it is hard to know what is connected to my cancer and what would have happened anyway.

That may be one of the hardest parts of parenting with cancer: you don’t get a clean control group. You don’t get to know who your kids would be, or what they would struggle with, if cancer had not entered the room.

You just keep parenting inside the uncertainty.

You tell the truth, but not too much.

You try not to scare them, but you answer their questions.

You take the help that lets you save your energy for them.

You forgive yourself, or try to.

You remember that being a good parent does not mean preventing your kids from facing hard things. Sometimes it means walking beside them through the hard thing you most wish they did not have to face.

And you hope that what they remember is not only the fear.

You hope they remember the honesty.
The meals from friends.
The reunions after treatment.
The people who showed up for them.
The fact that they were loved by you intensely through all of it.

If you wish to support my journey

If you feel moved to contribute to my cancer treatment travel fund on Go Fund Me or Venmo, I would be deeply grateful. As a single parent, traveling monthly for two years for treatment, the costs are a great challenge while keeping up with the parenting bills.

Two Saturdays ago, I wrote about how I was starting to feel like myself again after an upper respiratory infection. No sooner had I shut down my laptop than I started feeling a little off—frequent trips to the bathroom, then an odd pressure in my pelvis. By bedtime, I recognized the feeling: I’d had it once before, more than 20 years ago—a urinary tract infection. I didn’t think I’d be able to sleep as the symptoms intensified, but I also didn’t want to go to the ER at 9 p.m. for something that wasn’t life-threatening.

Shannon offered to go out and get an at-home treatment for the symptoms I’d found recommended online. Easier said than done. From his house in a rural area, he headed to the nearest store—a Dollar General 10 minutes away—that claimed the medication was in stock. It wasn’t. Then he drove in the other direction, into town. Forty-five minutes later, he returned with Azo, which numbed my urinary tract, easing the symptoms enough for me to sleep. At 7 a.m., I woke to my alarm and headed to the nearest urgent care, 30 miles away, for an appointment.

A urine sample confirmed my self-diagnosis, and a prescription for antibiotics—different from the ones I’d just taken for a sinus infection—was sent to my pharmacy. I picked it up two hours later when they opened for Sunday hours. With Azo on board, I made it through my son’s afternoon dance recital (photo below) and my commitment to help a friend paint her walls. Within a day, the antibiotics were doing their job.

I’m grateful that, so far, medications have effectively managed my immunosuppression-related infections.

Don’t overdo it

“Don’t overdo it,” a Substack reader and friend of my parents wrote in response to my last post. But my elder was too late with this advice. As a recovering, habitual over-doer who has long relied on the buzz of effort to feel like herself, I often find myself learning this lesson the hard way. Not only did I face two infections this past month—I also pushed myself too far.

This past week, I stepped back into my “before” life—days on campus, conversations with colleagues, long defenses with my Master’s and PhD students, hosting a visiting colleague from UC Berkeley, and evenings spent celebrating my students. I’m deeply grateful I could be present for those moments, and I truly enjoyed them. But each night, after getting my kids to bed, I collapsed—and by the end of the week, it felt like I’d been hit by a bus.

This is your reminder, Ashley: “normal” is still available to you—but it lives in a slower rhythm of working from home, tending to your body, sleeping, practicing yoga, reading novels, and being outside. The version of you that jumps back in with both feet will have to wait a little longer.

Fully integrating this lesson is a struggle, though—I can feel heaviness creeping in when I pull back too much. Finding the balance between effort and ease is a lifelong practice, more important than ever now.

An easier treatment trip

Yesterday, I headed back to Miami, wearing an N95 instead of a KN95. No more infections from planes for me. I was relieved I’d planned to fly American, rather than my typical cost-effective Spirit, because Spirit canceled all flights on Sunday. This was the first of several things that went right on this trip.

An Uber dropped me at the doorstep of a new house in Coral Gables—the home of a friend of a friend. I’d never met her, only exchanged a few texts after my sweet friend connected us, yet she offered for me to stay with her family while I’m in town for treatment. This kind gesture, on my first trip without a friend or family member, brought such comfort. We fell into conversation as if we’d known each other for years. She’s a lawyer turned fiction writer, a mother of a tween, with a fascinating path of moving around the world and finding her passion.

Today, I was feeling strong as my new friend dropped me off at the medical center. My labs looked better than ever. Treatment is without dexamethasone this time, so I hope to avoid the rebound at the end of the week. I am doing it alone. But I didn’t feel alone with the support of the nurses and spending my time writing and reading a novel my new friend leant me: Transcription by Ben Lerner.

Crazy creatures

When you’re in long-term cancer treatment, it can feel like too much to ask people to keep showing up—especially when, from the outside, you seem to be getting back to normal, even as you’re still carrying so much that isn’t. Deb is one of my friends who continues to show up without my asking. Here is today’s silly text about cuddly, but not, creatures on treatment day. Enjoy!

If you wish to support my journey

If you feel moved to contribute to my cancer treatment travel fund on Go Fund Me or Venmo, I’m deeply grateful. While my lodging costs went down due to a friend of a friend lodging me, the flight costs are up with Spirit going out of business and jet fuel at a premium.

Since last writing, I had to go on amoxicillin to get over the lingering effects of the upper respiratory infection (likely a subsequent bacterial sinus infection). With them on board, I kicked the rest of the infection out and quickly rebounded to feeling like myself again by last weekend.

Myself, who wanted to get outside and get moving in the beautiful weather. I was out on my paddle board for a float on the river, biking 30 miles on the trail, driving my kid to a soccer tournament 2 hours away, and actually attending a neighborhood potluck (yay for warm weather and the opportunity for meals outdoors).

I find myself bouncing back quicker now. The physical issues, other than from immunecompromise, are limited to a nasty rash the week of treatment. But most notable, I find my mood bouncing back more quickly. The monkey mind, so long activated about my diagnosis and my treatment uncertainty, can find calm. Being outdoors, the sun, the interactions with friends, the exercise, and going to yoga are surely helping, along with the longer pauses from being in medical centers and feeling like my identity is reduced to “cancer patient.”

In the breaks, it’s no longer all about me and my treatment. It’s now about my kids and their needs. It’s about my graduate students and their thesis defenses and end of semester annual reviews. It’s about the work I’ve delayed. It’s about other people with smoldering myeloma asking if we can text or chat. It’s about the routine doctor and dental appointments that were put off. It’s about planting native plants at my house in “the city” to make it feel more like it’s in the country. It’s about reading novels for the first time in years. It’s about spring and the wildflowers in the woods. It’s about warm weather and getting out on long bike rides. It’s about the bluebirds nesting in my backyard.

I have one more week to be a “normal person”, an extra week of break from treatment due to a work obligation. Thankfully, the trial schedule has some flexibility built in. I’ll don a mask and head back to campus for more events than I have in months. I’m sure it will feel odd and uncomfortable at times, but also hopefully refreshing.

If you wish to support my journey

If you feel moved to contribute to my cancer treatment travel fund on Go Fund Me or Venmo, I’m deeply grateful. Just as science is collaborative, getting through something like this is not meant to be done alone.

When your immune system is intentionally suppressed—when your treatment is both the thing meant to free you from cancer and the thing making you more vulnerable—you don’t get the luxury of ignoring symptoms. Every tickle in the throat becomes a question mark. Every bit of fatigue asks for interpretation. I was aware that patients on bi-specific antibody approaches to immunotherapy have high rates of hospitalization with infections, but also the IVIG (which I received the week before) has helped to decrease, although not eliminate, this risk.

Once it was clear that I was truly ill, I did what I’m supposed to do: I went to the doctor.

Tests revealed it was not COVID, not flu. That brought relief, but just briefly. If it were COVID or flu, there were medications. There is a sense—real or perceived—of control. But an upper respiratory virus? That’s just…time. Supportive care. Waiting to see if my body fights it effectively.

Each day layered on a little more: more congestion, more fatigue, more of that creeping sense that I was heading somewhere I didn’t control and I didn’t know when it would stop. By Tuesday, my voice was hoarse enough that I had to cancel Zoom meetings. A small inconvenience carrying with it deeper frustration—my ability to show up, to do the work I care about, taken again by something as ordinary as a cold virus.

And then Wednesday, the cough arrived. I have asthma and respiratory illnesses don’t tend to just pass through me. They settle in. Out came the “rescue inhaler” as I found myself in coughing fits.

Finally, Thursday, there was a turn. No new symptoms. I was getting better. Not dramatically, not in a clean, linear way. There were stretches of the day where I feel more like myself. My voice was coming back although I still sound squeaky. The heaviness was lifting, and I was off the couch.

At first, it felt glorious. There’s something quietly awe-inducing about realizing that a body can move in that direction—that it can absorb the hit, recalibrate, and begin to recover. When you have cancer you lose trust in your body. First, the knowing that there’s a foreign invader silently at work in your body that you didn’t know was there. Then the body’s unexpected response to treatment, seemingly taking away the body you know and trust. So, this recovery felt even more remarkable. I was grateful for IVIG, the studies that led to it being given prophylactically, and that I no longer have neutropenia.

But four days after the turn, I’m not out of it. The occasional coughing fits remind me of that. They come on suddenly, insistently, the kind where I have to stop what I’m doing and reach for my inhaler, riding out the intensity until my airways settle again. It’s a different kind of vigilance now—not the uncertainty of what is this, but the management of how do I keep this from escalating.

Because the truth is, even as things improve, I’m still not in the clear. With a suppressed immune system, recovery isn’t just about feeling better—it’s about what comes next. Secondary bacterial infections need to be considered. Improvement doesn’t mean I get to stop being careful. It just means things are looking up for now.

This is the strange terrain of being immunocompromised. You live in two realities at once. In one, this is a completely normal human experience. People get colds. They feel lousy for a few days. They complain, rest, and move on. In the other, the same experience is amplified. It asks more of you—more monitoring, more decision-making, more emotional regulation. It asks you to sit with uncertainty longer than you want to. It asks you not to catastrophize … while also not ignoring real risk.

It’s a lot to hold, all at once. And yet, here I am—still in it but also moving through it. Watching my body do something remarkable, with the help of IVIG, even if imperfectly.

Sometimes the hardest part isn’t the illness itself. It’s the uncertainty around it. And the work of staying grounded—not just while things are getting worse, but even as they begin, slowly, to get better.

If you wish to support my journey

If you feel moved to contribute to my cancer treatment travel fund on Go Fund Me or Venmo, I’m deeply grateful. Just as science is collaborative, getting through something like this is not meant to be done alone.

My M-spike is halved again!! (For more on how to interpret these tests, see my deep dive on M-spike in this post). That’s an 80% drop in less than 3 months since my treatment began on Jan 12.

I texted my family the above screen-capture. The best responses came from my brother: “I like that slope!” and then my sister-in-law: “Looks like a double black diamond to me!”

I didn’t get to hit any slopes this winter due to treatment and my new skis sat in my storage room. But I’ll take this slope if I can’t have gliding skis.

My Mspike is creeping closer to 0 (the goal!), and it’s typical that the pace slows as we get closer to 0. The remaining cancerous monoclonal proteins may be more persistent or hiding deeper in my bone marrow. If it hasn’t already, it will get to the point where it’s slower for my immune cells to find cancer cells to attack, like looking for a needle in a haystack. Myeloma isn’t a specific, localized target, it’s throughout a patient’s body.

Real life goes on

I needed this news because it had been a hard couple of days. Being a mom, dealing with kid struggles doesn’t just stop because you’re going through cancer treatment. On Friday I’d felt like I wanted to scream, “time out, I can’t take this right now” about an issue with my kid. But that’s not an option. While I can get “modified duties” at work, I can’t get “modified duties” for parenting. I had to “pull up my big girl pants,” as Deb likes to say, and dig in on addressing the kid issue as I was dealing with treatment side effects and incoming result anxiety.

Treatment side effects continue to become more limited. My white blood cells are stabilized and normal. There’s no sign that my liver has any more concern about treatment. The doctors were able to cut back my Dexamethasone to 8mg (from 20mg) this week, which was easier on my sleep and my mood (although I still fell asleep at 9:30pm last night and slept 10.5 hours to catch up from Dex sleep issues). My body is still responding adversely at the Teclistamab injection site with pain, inflammation, and swelling. But the Clobestal (a very high potency corticosteroid cream) works well to get it under control in a few days, if I get on it right away. It’s down to just a mild rash and an orange bruise now.

More uplifting graphs

The other graph that has lifted my spirits this week is not from my labs, but a summary of results of many myeloma patients. It shows the percentage of patients who were relapsed or refractory to previous lines of treatment and then tried four different types of treatment in studies across the past 4 decades. As you can see in 1986, when only dexamethasone was used, the outcomes were dire. But results from a 2026 study of using teclistamab-daratumumab (the same treatment I’m getting but for an earlier stage) are remarkable for what has previously been considered an incurable cancer. More than 80% of patients whose myeloma relapsed or wasn’t responding to other treatments got on this combo of drugs, and it did just the trick for 4+ years. Long term data is yet to come but it looks incredibly hopeful!

Unexpected sea slug sighting

What’s this stuffy amongst the Easter bunnies at Blacksburg’s Imaginations Toy & Furniture Co.? Nooo....I’m seeing things...it couldn’t be! Why, yes, it’s a sea bunny!!!!!!

The same sea bunny featured in my blog as part of the nudibranch (and other sea creature) treatment day text series by Deb Reynolds. (This obsession followed my finding a nudibranch on the beach in the Keys that looked like my toxic liver that I was trying to heal). The same sea bunny on my one-of-a-kind cancer treatment day socks.

I jumped for joy when I happened upon it while Easter shopping earlier this week. And then I ran through the store until I found the Toy Lady of Blacksburg, Paula, on the loading dock and gave her a big hug. Support is every where!

If you wish to support my journey

If you feel moved to contribute to my cancer treatment travel fund on Go Fund Me or Venmo, I’m deeply grateful. Just as science is collaborative, getting through something like this is not meant to be done alone.

This week I reached a turning point I didn’t imagine I would so soon. I couldn’t wait to show up for treatment. Jabs for blood draws? IVs being put in that make me feel faint? Sitting still for 3 hours with a drip? Drugs with insomniac side effects? 5 minute injections in my stomach?

YES PLEASE! Please give me that life-saving immunotherapy to send my cancer into remission. Please refill my body with immune globulin so it’s not so immune compromised and the fatigue that has been creeping back in goes away.

Two weeks ago, when I couldn’t make it to Miami for treatment, something shifted. It clarified—sharply and unexpectedly—how much I now look forward to these days, how much I want to be there, moving things forward.

And it wasn’t all needles and drugs. In fact, I’ve come to think of my cancer treatment center as a bit of a “spa day”. The warm blankets, the beautiful palm tree view from my infusion chair, the gabbing with a visiting friend, the oncology massage therapist, the mochas from the free coffee machine, the piano tunes coming from the lobby, the attentive care of the nurses and other staff, the hugs from my myeloma specialist…U Miami’s Lennar Foundation Medical Center really deserves 5 stars.

And truly, the best part is how my friends keep showing up for me, making sure I’m not doing this alone. Sure, I could do it alone, just like when you move alone to a new place, you can do it alone. But there’s a quiet ache under it all, if you have to unpack your boxes alone, navigate new roads without a copilot, and all the while you see other people with their people. As a remote cancer traveler, my people have to put in so much more effort to come to treatment with me — not just take off work and drive with me. They fly across the country, leave their jobs, kids, dogs, for days. But they want to bring me joy, make it easier, show their love. They make something that could be so hard and depressing (traveling back and worth to cancer treatment monthly), something I look forward to.

You showed up too

Not only did my freshman roommate from college show up, so many of you showed up for me this week—through messages, through food deliveries, through kid carpools and sleepovers, through gifts of books, through your willingness to lean into something that can feel hard to look at—and together you raised nearly $7,000 for my cancer treatment travel. That number is real and practical and deeply helpful, yes. But what feels even bigger is what sits underneath it: care, community, and a reminder that I’m not moving through this alone. It lands in that space I keep circling back to—between effort and ease—where I’m doing the work of getting through each day, and you are, somehow, helping hold me up inside it. Thank you for seeing me, for supporting me, and for making this path feel a little less solitary.

As I said before, if you feel moved to support me on Go Fund Me or Venmo, I’m deeply grateful. Or, just continue to follow along with my cathartic writing. That alone is such valuable support.

PS some of you have asked which route gets all of your money to me without any skimmed off the top. It’s Venmo. Then I chart anonymously your donation in the Go Fund Me amount, unless you tell me to include your name with the amount.

This challenge of uncertainty with life change resonates with me deeply. When I was diagnosed with high-risk smoldering multiple myeloma, uncertainty wasn’t just present—it was overwhelming, disorienting, almost unreal. It wasn’t just the uncertainty of how this health challenge would impact my life and my longevity, but, even more problematically, how I would tackle this health challenge.

For most of my life, I held an unstated assumption: medicine had answers. Clear ones. Predictable ones. Bacterial infection? Antibiotics. Pain? Tylenol. Rash? Steroids. A problem appears, and there is a solution to match.

But this diagnosis didn’t fit that framework. Suddenly, I was in a space where there wasn’t a single clear path forward—just evolving evidence, decisions without certainty, and debating doctors. My long-held belief in straightforward answers unraveled, and I found myself learning how to live—and choose—within the unknown.

At my first appointment to discuss my diagnosis with a community cancer center oncologist in fall 2024, she told me something that surprised me: the decision on how to treat (and whether to treat) my smoldering myeloma would be mine without a clear direction suggested by her. She encouraged me to explore clinical trials as the existing treatments were believed by many to be inadequate. I spent the next four months immersed in the world of clinical trials for high-risk smoldering multiple myeloma. I read protocols, compared approaches, and talked with experts from North Carolina to Massachusetts. But instead of finding clarity, I found something else entirely: even the doctors didn’t agree. They had divergent opinions on the value of past studies of the existing treatment option. They weren’t sure what the studies underway would ultimately show. They disagreed about whether smoldering myeloma should be treated at all—and if it should, how aggressively.

The deeper I looked, the more I realized: this wasn’t a problem with a single right answer. It was a field still searching for answers — a hot area of research and I was the study subject.

As a 44 year old patient with young kids, wanting to live a long life despite a diagnosis of myeloma, an incurable cancer, this was so disconcerting. From my own perspective, continuing to live with the uncertainty of whether I would start treatment soon or not, whether my myeloma would be quickly progressing or not, whether I had a few years or a couple of decades to live, was incredibly challenging mentally.

I struggled to make any plans for the future. Could I be there at a meeting next week? I don’t know. Maybe I would need to be answering the phone from a doctor. Or maybe I would be flying to a doctor’s office to meet with them about a clinical trial. Could I be there for a student’s Master’s degree defense in four months? I had no idea. Maybe I would be in treatment and feeling terrible. Teaching next semester? I don’t know. Maybe I would be in a trial across the country.

The things that had always seemed most certain seemed incredibly uncertain. As a person who always planned for and filled her calendar with exciting activities and trips in the future, I fell into a depression as I let my calendar empty.

The hardest part wasn’t just the uncertainty—it was what to do with it. Because eventually, I had to make a decision about my own treatment. In January, I went to a shorebird conservation meeting for work. And in a moment I couldn’t have predicted, I found exactly what I needed there. A presenter was talking about structured decision-making for shorebird management—how to make thoughtful, defensible choices when outcomes are uncertain and information is incomplete.

I remember sitting there, realizing: this is it. This is the framework I’ve been missing. Not an answer, but a way to move forward without one.

I grabbed the presenter at a break and began to brainstorm how this way of thinking might be applied to my cancer decision-making. When I headed home, I was obsessed with creating my own structured decision-making matrix for how to decide what to do in the face of high-risk smoldering myeloma and the six options that I had (watch and wait, revlamid-dexamethsone at my community cancer center, darzalex faspro at my community center once approved, 3 drug regimen at UNC, Car-T at Dana Farber, bi-specific antibody at Dana Farber). The six options, which were mine to choose between.

For weeks, my partner Shannon and I worked on determining how the options aligned with objectives and developing a matrix to display the choices. This was easier said than done as we poured through studies that used different metrics or didn’t have metrics for the indicators I cared about (e.g., which would be least challenging for my mental health).

My objectives were: maximizing how long I would live, maximizing time with my children, minimizing likelihood of adverse side effects (especially long-lasting ones), trusting my lead doctor, ensuring treatment wouldn’t cause financial instability, and maintaining my mental well-being. For each, I created indicators of the objectives and then assessed the probabilities associated with those indicators. For example, for time with kids, I considered treatment proximity and amount of total time in treatment. These two indicators were easier to assess than some of the others, with actual mileage to treatment centers and protocols that suggested a likely treatment time.

Then I went to Harvard’s Cancer Center, Dana-Farber, and with a slight bit of embarrassment for being “over the top”, showed my matrix to my myeloma specialist. She helped me decipher whether or not I had completed the chart appropriately. The key component of structured decision making is establishing your own objectives, or what’s important to you. The doctor couldn’t tell me that these were my objectives, but what she could tell me is whether I was assessing the treatment options appropriately for how they would play out vis-a-vis my objectives. She helped me adjust in such ways as clarifying how likely the side effects of a certain treatment would negatively impact my life as compared to another, or the likelihood a certain treatment would put me in remission.

After that appointment, it was clear that the best treatment for me was a bi-specific antibody that Harvard was trialing. But again, uncertainty struck. I was not 100% likely to get that treatment even if I passed the screening for the clinical trial. I had two-to-one odds that I would get the treatment.

Finally, in May, a time I determined would be good in my life and my caregivers’ lives to support me, I headed to Harvard and spent a few days screening for the trial. I endured a painful bone marrow biopsy, a PET CT scan, many tubes of blood being taken, and lots of Boston traffic. Then I had to wait to find out if I qualified for the trial and whether I would be selected for the treatment arm or the control arm. With the control arm, I would receive an old treatment that, according to my matrix, did not optimize my objectives for what I was looking for in treatment.

Unfortunately, I received a phone call that I had been selected for the control arm. After all this time... sorting through uncertainty and figuring out the best treatment for me, I didn’t qualify for it. After conversations with the doctors, we determined that I should withdraw from the trial, that this wasn’t the right treatment for me. But “watch and wait” (monitoring every 2-3 months until the myeloma becomes active, harming the body) hadn’t been a top choice for me in my matrix either.

The Harvard doctors mentioned that they would have new trials in the future that I might qualify for, but they couldn’t tell me any details about them because they hadn’t been approved yet. They couldn’t tell me when the trials would happen. They couldn’t tell me what the side effects might be of those drugs. More uncertainty.

But with no treatment in my future, I finally decided it was time to focus on living. It was summer. A key time for my outdoor pursuits. I got on my paddleboard and rode the rapids of the New River. I hopped on my bike and began training for a 100-mile ride on the Greenbrier Trail. I spent time with my children. Playing at the pool. Going to a conference. Taking a ferry to a remote island in the middle of the Pacific Ocean and camping there.

I wasn’t certain what my treatment would be, but I was certain that I wanted to enjoy my time until I may be struggling with treatment. And yet uncertainty continued to gnaw at me. I found a clinical trial with the same treatment in Miami, but I knew no one there. I had never been there, other than to the airport, and wasn’t sure how I could pay for such travel. I talked to family about it, but they discouraged me. “Why would I go to a place called Miami? Harvard seemed worth the money, but was Miami?”

I was also uncertain about whether or not I could teach in the fall, with the question of starting the trial at hand. Finally, I made the decision that I wouldn’t start treatment until at least the end of the semester. Those four months felt remarkably peaceful. Having a certain period of time where I could just live my life as I normally did, despite having blood tests every other month and having a compromised immune system, felt fantastic.

Being able to teach students again in the classroom brought me such joy. Shannon remarked at how I had stopped the typical professor complaining about teaching. Instead, I came home from an everyday lecture excited I had sparked student interest or had a great discussion with them.

As the semester began to wane, again, the uncertainty of what lay ahead was at the forefront of my thinking. I noted that my blood tests had been showing that the myeloma may be progressing. My M-spike had increased from 2.6 to 3, and it wasn’t going back down. The M-spike is the measure of clonal (cancerous) protein in one’s blood.

I reached out to my trusted doctor at Dana-Farber and let her know what was going on. With certainty, she said, “If it looks like the myeloma may be progressing, I’d really like you to get treatment. We don’t know when our trial is going to start at Dana-Farber.” Having marching orders was just what I needed.

Within a week, I was scheduled to begin the clinical trial at University of Miami. To have made a decision and be moving out of uncertainty about treatment felt simultaneously reassuring and scary. Uncertainty of how the trial would impact my life again caused me to clear my calendar.

I spoke with the clinical nurses, asking them questions about how my body would respond to the treatment, whether I’d be able to work, how much I’d be able to work, whether I’d be able to take care of my kids, how much I’d be able to take care of my kids, whether I’d need support at home as a single mom, whether I’d be able to fly back and forth from Miami or would need to stay there. As a social scientist I’m the queen of interviewing and triangulating. So many questions that I wanted answers to so that I could appropriately plan for this uncertain future.

Now, nearly 10 weeks in, I can say with certainty that their answers were only partly accurate. My unique situation played out, and continues to play out, in unexpected ways. I am learning to adapt to the changes, be patient with the challenges, and that, while the path forward may be uncertain, what is most important is to continue on it, with intention.

Contribute to my clinical trial travel costs

After my last post about my treatment travel costs — up to $25k this year and likely $15k-20k next year — many of you reached out to me and asked how you can contribute.

I’ve hesitated to ask for financial help, concerned that there are so many others in need. But I’ve come to see this differently due to your requests to provide a way to help. Just as science is collaborative, getting through something like this is not meant to be done alone.

If you feel moved to support me on Go Fund Me or Venmo, I’m deeply grateful. Or, just continue to follow along with my cathartic writing. That alone is such valuable support.

Between Effort and Ease

A Social Scientist, Yogi, and Mom in a Cancer Clinical Trial, Living with Intention and In Between the Hospital and Her Normal Life

By Ashley Dayer

The long version

Leaving behind high winds and thunderstorms at home on Monday morning, I arrived at the Charlotte Airport just as I learned my flight was canceled. I opened my weather app and saw that the entire East Coast was covered in a severe storm warning. I wouldn’t let this stop me from getting to Miami for my next round of treatment. I quickly determined that I could get on a direct Spirit flight the next morning and that would be the best option. I contacted my cancer research trial coordinator and begged her to help me push back my early morning appointments for afternoon appointments instead. She said she could let me know if it was possible by the end of the day. I took the risk and figured out the best way to get a hotel in the Charlotte area and headed there to escape the chaos of an airport with hundreds of flight cancellations.

This all sounds like it happened really fast but it was a three-hour saga, including calling my dad to determine if any of his hotel points would work to use, waiting 45 minutes for an airport shuttle to a hotel just 10 minutes away, canceling my birthday dinner in Miami with a classmate, letting my Airbnb know that I wouldn’t make the first night, etc. But, by the end of the day, it seemed like all had worked out: I had a flight scheduled for the next morning at 7 AM, my cancer team had determined that they would figure out a way to fit me into the overbooked infusion center for the afternoon, I had managed to get some work done at the hotel, and I was getting to bed early after a delivery order of sushi. Not the ideal birthday, but I’ve had a great 10 days leading up to it.

This morning I woke up at 3 AM, wired and ready to go. I had already checked my clock twice during the night, worried that I was going to miss my shuttle at 5 AM. I couldn’t fall back asleep so I finally gave up at 4 AM and opened my email. I was distraught to see that I had been rebooked on a flight to Miami on Wednesday (due to my flight being cancelled again). This wouldn’t work; my cancer team only does treatment on Tuesdays — my busy doctor’s only day in clinic. I opened Google Flights and found that there were no flight options until this evening, and even those would cost me 800 to over $1000 to get down to Miami. So I finally gave up. I wrote my research coordinator and let her know I would need to reschedule.

While it sounds like no big deal to reschedule for the upcoming week that meant accepting that I would lose over $600 in travel costs this week (an Airbnb that I wasn’t going to use, a dog sitter for the past couple of nights in advance of my trip to Charlotte, my mileage down to Charlotte and back, my prepaid airport parking, my one night at a Charlotte hotel, the Uber that I had to take from my hotel to the parking place, the dinner I ordered out last night). Thankfully, though, my flight could be rescheduled because I had paid the extra to have a ticket with free change allowed. And not to mention the hassle of rescheduling of work meetings, kid schedules, dog sitters, wasted work time, etc.

I provide you with this blow-by-blow, not for sympathy or for venting (well, maybe a little). Mostly, I provide this detail to document first-hand what it’s like to be a cancer treatment traveler. Few of those logistics would need to be sorted out or costs would exist if I lived in driving distance of my treatment.

Many of you have asked whether clinical trials pay for patients’ travel. No, they don’t. Many of you have also asked if the clinical trial pays for my treatment. No, they don’t. Fortunately, I have excellent health insurance that is paying for all of my treatment and procedures. I just have to pay my $1,500 deductible each year.

So then, what are the travel costs?

For me, someone who doesn’t have any family or friends in the city that I’m going to, travel costs include transportation for me and a caretaker from Virginia (or somewhere else) to Miami once a month. But before that, once a week and a whole 3 week stint. As you know, my distance requires that I fly. There is a program called Corporate Angel Network that provides flights to cancer patients on private airlines. I tried to get it to work for me, but it doesn’t. There are hoops and challenges associated with it (that I won’t go into for now), but the biggest issue is that I live in a town that doesn’t have a lot of private jets going in and out of it to Miami. I also live in a town that doesn’t have direct flights to Miami, so my choice is always to get a much more expensive flight 45 minutes from my house at my local airport and take the risk of not making my connection, or drive the three hours down to Charlotte, where I also run the risk of not getting on a flight, apparently. And with this, there comes the cost of mileage driving to and from the airport, as well as much expensive parking at the airport and more of my time.

The other big cost is lodging. Initially, I had 12 free nights at Extended Stay America through the American Cancer Society, but those were quickly used up. Now I try to find an inexpensive Airbnb but they aren’t refundable at the last minute when your flight gets cancelled, unless you have a super generous host but then the loss is theirs. As someone who ran an Airbnb for several years, I don’t want to stick the loss to them.

Remaining costs include meals. I take advantage of the free sandwiches, fruit, and hummus on treatment day at the hospital and the free coffee machines, but everything else is on me. I try to get groceries rather than pay for expensive meals, but sometimes it’s more expensive if I don’t have a car or the place I’m staying has inadequate cooking supplies. This time I threw a shelf-stable microwaveable meal in my bag.

For pet owners like me, there is also pet sitting to be considered. I’m really grateful that I have a postdoc living in my basement apartment who happily pet sits for me at a reasonable cost. If I was sending my dogs to the dog kennel, this could be over $100 a night.

And, of course, there is ground transportation, which might include renting a car or Ubers in Miami. With renting a car comes the cost of gas and the cost of the second driver.

Thankfully, my costs do not include childcare because I’m divorced. My kids’ dad takes care of them when I go to treatment, and I am very fortunate to have an ex who is willing to change his schedule constantly for my treatment.

None of this accounts for the cost of my time to make all of these reservations and plans and try to find the most cost-effective option each time. For example, I try to determine if any frequent flyer miles that I have might work, checking each relevant airlines’ miles page, but now they are mostly used up. This is time that is already limited because I am spending so much time in treatment and traveling.

What does this add up to? I don’t know yet. Originally I had hoped to keep it under $16,000 for the year but I think $20,000 or maybe even $25,000 is more realistic. And this estimate includes being quite frugal with how I travel and some of the freebies I mentioned above.

I am in a fortunate place that I have some family support to pay these costs and I have a job that allows me to take off time and is very flexible with scheduling. Clearly clinical trials are not accessible or realistic for most people, especially if you don’t live in the city where they are occurring or aren’t retired or with a very flexible job.

This results in a huge equity issue with clinical trials. I don’t understand why doctors don’t include the cost of travel for their patients in their grants or in their budgets for the pharmaceutical companies that are paying for the trials. As a social scientist myself, I have grown accustomed to covering my study participants’ cost and even offering a stipend for their time. I guess this clinical trial system is the way it is because there are enough of us suckers who are grateful to be able to try a life-saving treatment and will find a way to pay for it. But then are the results really representative of the general patient population? This is an issue for another day.

For now, I need to work on rescheduling travel arrangements for the week of March 30th (I just learned my doctor isn’t available next week). The clinical team assured me this isn’t clinically problematic but I know the levels of immunotherapy are now going to be too low to be effective, possibly prolonging my overall treatment. At least my cancer levels aren’t high enough that this is a crisis for me. Also, I do need my IV of immune globulin every 28 days to keep my immune system functioning adequately. Guess, I’ll just have to be more careful about catching anything in the next two weeks. Fingers crossed.

We were treated to nature’s surprises like an 8-foot alligator on the beach, a big push of shorebird migration after a storm, dolphins feeding around us for over an hour as we wave-jumped, and the world’s largest ghost crab who gave me a humorous jump-scare. The sound of ocean waves soothed me, as did the shade of the canopy of Live Oaks and the greenery of the palmettos.

With 4 days of endless sleep under my belt, I finally set an alarm for sunrise, followed by a 7.5 mile beach to coastal forest hike with my 8 year old. At the hot end, he was quite fatigued but I was ready for more. The next day I woke and ran a 4 mile loop myself. I don’t know when I last ran 4 miles. Maybe on Cumberland 2 years ago? But more importantly than my body feeling strong, my mind no longer felt like it was on high alert. I didn’t need morning meditation and accupressure to regulate before I started my day. I didn’t miss going to yoga. Nature, rest, and family offered me all I needed.

Things I’ve been musing about lately

1. People tell me, “you look so good,” when they see me. Or when they hear I’m in cancer treatment, they say, “you don’t look like you have cancer.” I’m not what a stereotypical cancer patient looks like. In fact, you don’t see any physical signs on the outside of me that I have no cancer. No surgery scars (well except for some small ones from my appendix cancer surgery in 2022). No hair loss. Only minor weight loss from my increased interest in healthy diet during and after the liver toxicity phase of my step-up dosing. The only sign I’m a cancer patient is the mask I wear when in crowded public places. But I’m still a cancer patient, like many others, fighting an invisible battle to those who pass by on the street.

2. When you’re an active person who relies on moving your body for your joy and your peace, losing your strength, dealing with pain, or decreased mobility can be devastating as part of your identity, your soul, is taken away. This theme echoed in films I watched at the Banff Mountain Film Fest World Tour this weekend, depicting outdoor adventurers who experienced devastating injuries and fought to come back. But it’s so easy not to fight to come back, to accept a sad new reality. Just a month ago, I recall telling my dad I would need to get an e-bike to enjoy gravel biking with Shannon this summer. That admission made after last summer’s two century-riding weekend trips. After all, I had already sat out down-hill ski season. Getting on my bike today and riding 25 miles was so unexpected, so empowering. I pushed hard in the wind. I watched the odometer get to 17 mph. My body felt strong under me. And I felt such gratitude that my joy hadn’t been taken away from me. (If you know, you know. If you don’t, the gravity of this experience might be hard to fully grasp).

Good news on my myeloma treatment regimen

My treatment regimen (Teclistamab + Darzalex Faspro) was approved by the FDA for those with a more advanced phase of multiple myeloma. I particularly liked this headline from Medpage Today: “Myeloma Combo with ‘Unprecedented’ Effect Wins FDA Approval.” I feel fortunate to be part of the clinical trial testing this regimen for early stage myeloma and hopeful for future headlines about our trial’s results.

Heading back

Tomorrow, on my 47th birthday, I’ll head back to Miami for more of this life-giving treatment, Latin American food, and lab test results on my progress. I can do this.

I wish I could say you haven’t heard from me in over a week because I was being, but not doing, as promised in my last post. But that’s not the case. Well, I guess you could say I was doing, to prepare for being.

Each year I pack up my kids up for spring break and take them to Cumberland Island National Seashore, a barrier island on the Georgia/Florida border. I wasn’t sure if I’d be able to do it this year. Originally, I was supposed to have treatment this week, but my schedule pushed back a week due to the liver issue in week 2 of treatment. Still, I was concerned I wouldn’t have the energy for the trip. Preparing for a remote week-long camping trip is a tremendous amount of effort, especially as a solo-traveling mom, and others said I’d be fatigued by my treatment. After driving 9 hours from Virginia (and a hotel overnight), we take a ferry to the island where there are no services, no food to buy, no place to purchase anything you forget. We haul our gear via bike, cart, and our strong backs a half-mile across the island where we set up a tent in a coastal forest site, near the beach, cook our own meals on our camp stove and fire, and spend a slow week walking, biking, shelling, herping, birding, sand castle building, reading, and resting on the island.

The week before last, when my body returned to pre-treatment strength, I knew that I’d be able to take the kids and maintain some semblance of “normal” in their lives. My parents were joining us as well so there would be extra hands on the island. Last year when my mom was at home awaiting a heart transplant I had headed to Cumberland, with the kids, by myself. So this year would be easier. And it was, other than trying to pack throughout the week, while honoring my desire to slow down at home and allow my brain to recuperate, and juggling preparations to be away from work and school events for the kids.

Healing my mind

Despite the trip preparation chaos, my mind is settling down, feeling less unsafe and reconnected with my body. This week I visited my accupuncturist and my massage therapist who worked on my tense upper back, shoulders and neck, as well as my activated mind. I also had my first energy medicine session with the owner of my yoga studio who gave me a series of breathing practices, accupressure points-focused practices, and more to calm my nervous system. Each night and morning I spent 10-15 minutes on them, feeling so much calm as my breath filled my body again without tightness in my chest. As I drove to Cumberland Island, I listened to the last section of The Body Keeps the Score, a well-known book by a trauma psychiatrist, intrigued as he explained the empirical evidence behind many of the practices that have been bringing me peace and bringing me back in a body that had become unknown and unsafe.

And now I have a week to be. Tonight I will sleep listening to waves crash on shore, without a Spotify track, app, or sound machine.

With my injection site reaction resolved by Tuesday and my pain and soreness worn off, I returned to my first yoga class at my hOMe yoga studio since early January. I was afraid to go, to get sick, even though my doctors told me I’m “fine to live my life” — just mask in crowded public spaces and wash my hands well and frequently. Illness is my biggest risk now, but it’s not as risky as it was a couple weeks ago when I was severely neutropenic. Or, even last week before I was given an immune globulin IV to resolve my low IgG antibody. A Facebook friend who I met in a group for Myeloma patients had gently mentioned that I will need to make choices about risk, in consideration of mental health benefits of doing activities that might expose me to germs. When she was in treatment, she told me, she weighed the importance of getting to her yoga studio and decided she would minimize risk elsewhere and benefit from the yoga. I let that sink in and after a couple days I decided I needed to go.

The class, a warm flow, taught by the studio owner who is an energy medicine practitioner, with the most calming voice, was truly a turning point. I began to feel connected again with the body I know to be my mine, but had been so unknown and full of surprises, due to its response to immunotherapy and other drugs, for the past six weeks. I felt such joy to move again without pain and tightness. Movement — be it through yoga, biking, XC skiing, swimming, running— is one of my primary strategies for reducing stress and anxiety. But, at a most stressful time, I hadn’t been able to access this movement, other than walking and virtual yoga classes at home, shrouded by soreness. To be able to push-up with strength in a side-plank and flow through a chaturanga to downward without aches felt so unexpected. I had so easily lost hope that I could feel strong and agile. I had accepted my new identity as a cancer patient who would walk slowly unless on Dex, stop going to yoga, ride an e-bike instead of a gravel bike, and give up running. But maybe that won’t be my reality. Hope!

Coming back into my body, the body I know, felt so healing. Fear and uncertainty about my body’s response to treatment has brought me intense anxiety and mental distress. I realized, as I flowed, how much healing I still have to do. So much to process through movement, breathe, thought, meditation, music, and rest.

Balancing effort and ease

The next day I subbed for a sick colleague as the instructor of a gentle yoga flow. I decided to explore effort and ease, my blog’s namesake, in the class. We contemplated the yoga sutra that mentions this balance. We repeated poses and flows — first with effort (contracted muscles, strong core, rigidity, precision) and then with ease (slowly, flowing, lose, bends in arms and legs) and then with balance of the two. Then, I closed class with a few lines that I encouraged my students to ponder, not only in yoga classes, but also off the mat in their lives:

Rest in the quiet balance
between doing
and being.

Steady.
Soft.
Enough.

And, yet, I returned home and continued pushing with effort, and not enough ease, in my own life as I cared for a kid home from school with an ear infection, while juggling a return to work, some major school project deadlines for the kids, also trying to plan for my upcoming return trips to Miami, and attempting to get my household chores and finances caught up (thank goodness my friends brought over meals to keep me from also trying to cook too).

When I landed on my therapist’s couch on Thursday evening, I told her I thought I had tried to jump back into my old life too quickly and pretend I wasn’t still in cancer treatment. My body felt good but I’d failed to check in with my mind, and it was still overwhelmed with trying to process what had happened and what is still happening with my cancer treatment and what I’m learning about myself and my priorities in life. I told her I hadn’t even had time to write, which feels so healing. But I also felt that I needed insights beyond those I could process myself, so she suggested we do a music therapy session where I lie down and listen to a curated music list and my therapist guides me to explore visualizations and emotions. So many insights came from that session, most importantly that I yearn for time to just “be” as part of my healing, as part of my pursuit of feeling safe in my body and mind again.

Isn’t it ironic that the yoga instructor, who encouraged her clients to think about balancing being and doing had been so focused on doing she hadn’t heard her mind and body calling out for time to be?

A Sunday morning with friends and our kids, hearing everyone’s gratitudes before we drink cacoa. Helping my kid on his science fair project. A yummy meal, home-cooked by friends. An evening where I’m not packing my bags for Florida.

Why are my body and mind feeling better (but not perfect — still some aches that required Tylenol today) this week, despite the double dose of Teclistamab? I don’t know but I have hypotheses: the immune globulin IV on my treatment day, the extra sleep and rest I had when I returned to town as I only had my kids one day upon my return, my body may be adjusting to the treatment and responding with less inflammation (other than the injection site explosion on my belly skin leads me to believe the opposite), the good news on Friday to boost my mood….it could be any or all of these. I don’t know but I hope it continues as I appreciate feeling more like myself.

Working while on a clinical trial

I am preparing for a week of work, remotely from home, taking it slow. I’m looking forward to digging in, reviewing my grad students’ and other team members’ work, joining our research project team meetings again, and meeting 1:1 with my team members. Some of you may wonder how much work someone can do on this trial, especially when traveling for it. I asked the research nurse this before I started, and she was much more positive about my ability to work in the first five weeks of the trial than played out. I’m grateful my therapist suggested I plan to take medical leave and give myself the space and rest I might need, because I needed it.

For the first ten days I did zero work; I felt terrible a lot of this time due to lack of sleep in the hospital, adjusting to immunotherapy physically and mentally, my liver issues, dealing with coming off high levels of dexamethasone, and making travel logistic changes, again and agin. I finally managed 4 hours of email and check-ins with my team on day 11. The next week when I finally headed back to Virginia, I worked 12 hours (that week had travel disruptions that impacted sleep and took more travel time). Since then I’ve worked 15 to 18 hours/week, usually managing some time in airports and on planes, taking treatment days off completely, and then 5-6 hours/ day when I’m back at the end of the week. One time sink I didn’t anticipate is travel planning; I’ve spent much more time than expected trying to find inexpensive flights and lodging, coordinating with friends and family joining me, figuring out ground transportation, juggling support for kid drop-offs and pick-ups on travel days, etc.

I am very fortunate to have a flexible job that I can do remotely, as a professor who isn’t teaching this semester, so I can set my own work hours; my biggest challenge is managing my own overambitious expectations of myself so I don’t overcommit and wear myself out. I am also very fortunate to have a LOT of sick leave — 6 months’ worth. So, you might wonder then, why am I working at all? In an ideal world, I wouldn’t so I could rest, relax, spend time with family and friends, and process this challenging experience.

But, despite the apparent flexibility, professors can’t fully take time off as easily as it sounds. I have eight active research grants in my Lab that I’m the principal investigator on (and I’m constantly needing to work on new grants to ensure my research program keeps going). The current projects can’t just stop as our sponsors expect outputs from us and are paying people who I need to supervise. I also have seven graduate students I advise who need to keep making progress towards their degrees with two of them aiming to graduate this semester (which means theses and dissertations to finish off, with my support). Thankfully, I have two senior level scientists in my Lab and great colleagues who’ve helped in mentoring the grad students and others in my Lab while I’ve been in and out of the hospital.

With no travel for treatment this week, the time has come for me to ease into doing more work. In line with the name of my blog, I aim to find a new balance of effort and ease so I ensure my mind and body can effectively manage the treatment effects. The last thing I want to do is get sick from not taking care of myself and my overtaxed immune system. I am also aware that I need to give adequate attention to my kids who I single parent now 4-5 days a week to make up for lost time; they have struggled with my absence and the uncertainty in the last 6 weeks. I find it easier to start slow and then build if it feels right so this week I made myself a schedule of working 25 hours for the week. I will be curious about how that feels and adjust as needed. It’s all an experiment.

Drum roll, please………….

BOOM!

My M-spike (learn more about this measure below) is down from 3.0 to 1.2. That’s a SIXTY percent decrease! The goal is to get it to zero, and it’s well on its way. My research nurse confirmed that this magnitude of a drop is on the high end of what they are seeing with patients. The treatment is working! My body’s T-cells are engaging, and the myeloma is getting destroyed! All the travel, inflammation, side effects, rashes, and stress are worth it!

Deep dive on M-spike

Serum Protein Electrophoresis (SPEP) is a test that separates and measures proteins, which is essential to myeloma detection and diagnosis as well as other autoimmune disease, kidney disease, and liver disease. For myeloma patients, it importantly measures the M-spike (a measure of how much monoclonal protein is in the blood). That monoclonal protein is the repeated copy of the plasma cell that went rogue and led to myeloma. A person who doesn’t have myeloma (or precursor disease like MGUS) has an M-spike of 0.

The M-spike is the measurable footprint of myeloma. When it shrinks, it means the abnormal plasma cells are being suppressed by treatment.

For anyone who wants more information on myeloma blood labs, this reference from the Multiple Myeloma Research Foundation is helpful.

What’s next?

While this is my first positive sign of treatment response, I still have a way to go. My research nurse explained that the team often sees a substantial drop in the first cycle of treatment but that I shouldn’t expect as substantial a drop in the next cycle (I will now be tested at the start of each cycle when I go for treatment, every 28 days). But the REVIVE team has seen that all their high-risk smoldering myeloma patients get to MRD negativity (the goal that we will test for with a bone marrow biopsy, once the M-spike gets to zero) in 5 -11 months. My treatment will continue monthly for up to 2 years total to ensure all of the myeloma is gone from every nook and cranny of my bone marrow.

For now, I’m going to celebrate this success that makes the red, inflamed reaction on my belly at this week’s injection site less painful and hopefully will make tomorrow’s fatigue, low mood, and return of the aches less upsetting. Science works! Bodies are resilient!