Some Days are for Grieving 5.11.2020

Yesterday was Mother’s Day. A strange Mother’s Day for sure, but a day of celebration, nonetheless. A day to look forward to in a sea of non-celebratory days. 

Today is today. Today is NOT Mother’s Day. There will be no celebration, no special food nor bubbly drink. Today is a Monday, a day we pay bills, file for unemployment, get back to business. Today is for grieving. 

During cancer treatment, I had 2 different types of chemotherapy. One occurred pre-surgery, neoadjuvant chemo. That was a series of 6, occurring every 3 weeks. It was in a clinical trial to see how that drug worked compared to the standard drug being used for HER-2 positive breast cancers. This drug left my hair intact, my digestive system in peace. It was targeted chemotherapy, treating the cancer directly, rather than slamming the whole body. 

The second type of chemotherapy I received was a standard drug used post-surgery to clean up any remaining cancer cells, aimed at preventing metastatic cancer. That drug entered my system once a week for 12 weeks. It claimed my platinum blonde hair on week 4, drove out my very last eyelash on May 4, 2018. The fourth was definitely NOT with my eyelashes. 

Regardless of the drug, the day of the week, or the number of days between being shot up, I learned early on that there were 2 days I could count on with every infusion. There would be a day for treatment. And there would be a day for grief. 

Treatment days were, for the most part, days I enjoyed. There were a few that were heavy on the anxiety. Day one of Western medical treatment 7/12/2017, I was scheduled to start the pre-surgery clinical trial drug. I’d been planning for this day since 6/13/17 (day of diagnosis). My kids were being cared for. I had an early morning ride to Boston, lab work at 7am, visit with Dr. at 8. But then at 3pm we were still waiting for word from a California lab that my biopsies had been looked at, that I qualify for the study. There was talk of “going home and coming back tomorrow,” talk I would not abide. I was wearing my caped Wonder Woman knee socks and my lucky yellow undies. This was not a “come back tomorrow” sort of outfit. We got final approval in time for me to start the infusion (slower on the first round) and finish up at 8pm, official closing time of the Infusion center. 

The treatment days that pushed me to my emotional limits were the ones tainted by newness or riddled with unknowns. On those days, the news was unclear, the waters ahead murky. More often than not though, treatment days were predictable, news was positive. I showed up as strongly as I could on treatment days, ‘rainbow and sparkle’ adorned. I learned that the best course of action was to stay present, ready to weather whatever the day handed me, focused on being with “what is so” in the world of cancer treatment that day. 

The grieving days were different. They were colored more faintly, grey here, muted yellow there. Their occurrence in relation to treatment days varied slightly. Oral steroids pre-treatment could delay their onset, add a manic flavor. At their finest, grieving days were all of it, painful and necessary and beautiful and cathartic. They left me feeling cleansed, forgiven, able to carry another weight, conscious of my place in the Universe. The light seemed different on those days, more ethereal, a reminder that life is impermanent, and humans are fragile. My heart ached as I connected with the fullness of it all, the heartbreaking and beautiful experience of being human.  

There was much to grieve: a body burdened by illness; a loss of innocence; paths not taken; relationships lost. The grieving days were a vital part of my healing. They allowed me to confront and process emotions that I was often too busy to deal with. To grieve is to release, to release is to heal. Painful as they may have been, I could not have healed without them.

So much of what we are all experiencing courtesy of COVID-19 reminds me of my experience during cancer treatment. Some of these days are for grieving too. May you find the healing after the grief.

Our word of the week
Sunshine girl
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Time: aching. precious.
Why this deep sadness?
There, at the edges.

Some days it creeps in.

‘So much to do, so little time.’
‘No time like the present.’
‘I’ll sleep when I’m dead.’

This body craves rest.

With rest comes darkness.
To sadness, a loyal companion.
Both lying in wait–patient, watchful.

Today they claim center stage.

One must summon courage
To dance in the shadows.

On days I linger there —
I am amongst friends.

Some photos from our Thanksgiving Day 2018 visit to the Grand Canyon. Our view went from cloudy and gray to sunny and clear over the course of a few hours. Not unlike my view of life these days. 🌧🌦⛅️🌤☀️

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July 27, 28, 29, 2018. For me, the last weekend in July has become a beacon. It holds as much importance (maybe more) in the marking of time as the January 1stholiday that’s celebrated worldwide. No matter where the last year has taken me, emotionally, physically, energetically…Newport Folk Festival at the end of July always brings me home.

Folk Festival weekend fosters an evolution of sorts. Friday Danielle looks vastly different than Sunday Danielle. When I first laid my backpack down on the Fort stage blanket of my friends, I surprisingly felt pain in the middle of my back. Upon entering the Newport triangle, I separated myself from the world’s problems and checked in with myself. My chest tight, neck on fire, jaw clenched, lungs unable to expand fully. My mind, fearful—for my health, my safety, the safety of my belongings. Energetically I felt painfully alert, a bit vibrationally haywire. For too long my frequency had been tuned into pain and hurt and fear and ache. For too long I had allowed the dominant discourse in our country to take up residence in my physical body.

Those 3 days spent at the Fort recalibrate me. The setting is beautiful—ocean views, blue skies, boats sailing past—but it’s the energy that draws me back again and again. Standing three weeks out from the magic, Folk Fest weekend shines like a declaration: of who we are, what we stand for, what we’re creating. In a country divided, our community chose unity.

When today’s headlines are found in history books, what will be the lessons learned? Living through this time, it’s hard to have an accurate perspective. Lately it feels like the very air we breathe is filled with fear, worry, danger. It’s become so normalized that it’s hard to remember a time when this wasn’t so—until I step through the gates of Folk Fest and remember.

NFF Executive Producer Jay Sweet reminds us to Be Present, Be Kind, Be Open, Be TOGETHER. Signs placed throughout the festival grounds echo this sentiment. For those of us who return to Newport every year like a pilgrimage, this is part of why we come. In our festival bubble, all is well. I trust that I am exactly where I need to be at all times. Lines don’t concern me—there is music to be heard and friendships to be forged and maybe what I need at this very moment will be found by standing in this very line. In Newport, my needs are met by my community. This community is skilled at meeting needs that are both simple (Band-Aids, baby wipes, a blanket to return to) and complex (creating a space of presence, connection, music, and love that supports healing on a profound level).

I entered the gates on Friday, fearful, tired, in pain; body aching from the strain of bracing myself against life; ears ringing from the clamor of voices loud and persistent, filling our hearts and minds with fear, hatred, division. As the weekend progressed, I released my resistance and entered the flow. By Sunday evening’s closing collaboration, “A Change is Gonna Come,” I felt energized, aware, vibrationally tuned in, and once again inspired by what we create as a community each year. As I cruised back to downtown Newport on the water taxi, I felt peaceful. Basking in that peaceful glow, I felt certain that a change is surely going to come.

Farewell view of Newport Folk Fest Sunday Evening

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Bald Woman Rising

The year is 2018. We Americans live in a country divided, our news feeds filled with stories of people judging others based on external factors and taking action against them for it. As I endured the chemotherapy treatments that in January took the hair from my head, and much later my eyebrows and lashes, I wondered how this country would treat me as I made my way in the world. I noticed that people can’t help but stare, and some don’t choose to make eye contact. Little kids are fascinated by bald women. But overall, the energy I’ve encountered has been its own form of healing.

Cancer is equal opportunity, non-denominational, without political party. It’s the great equalizer. What I’ve felt the last few months is a generalized kindness I haven’t felt in a long time—maybe since I was a young child. Looking at this bald, middle-aged white woman, people see someone who is probably dealing with something. Not wanting to add to my burden, they extend to me a silent courtesy that crosses many boundaries; they offer me their place in line, quietly discount my service, throw in the guacamole for free. Knowing that this experience will be fleeting, I embrace this energy and allow myself to receive. In the karmic flow of life, I have given much kindness and courtesy and positive energy. In my time of need, I allow this energy to flow back towards me; I float through my daily errands, my spirits buoyed, my love of humanity replenished, peaceful with the knowledge that even in the throes of cancer treatment I am still #winning.

I have no urge to refuse such charitable actions. As humans, everyone we know has been touched by cancer in some way. This person looking to ease my journey may see in me their grandmother, sister, best friend. Who am I to prevent them from doing for me what they may not have been able to do for a loved one who lost their battle? I express my gratitude for their kindness, and I carry forth that kindness into my next encounter. We are all elevated by these acts of generosity and the feelings of goodwill they trigger.

Although none of us are guaranteed another day on Earth, the fragility of my time here is a bit more front and center. People listen when I speak, recognizing that I have faced death more intimately and recently than perhaps they have. I have walked through fire and gained the perspective that such a journey grants. There is wisdom in those flames, if we choose to seek it.

I treat these weeks of my life with a certain reverence; like those 9 months when life grew inside of me, this time will soon be over. As my eyebrows fill in and my pale scalp darkens with 3 ½ weeks of stubble, I can feel the energy of the world out there shifting. I’m starting to look like someone who chose to shave my head as a form of self-expression, rather than someone who chose to shave it rather than feel it fall out as I moved through my day, self-conscious that my shoulders were filled with platinum blonde hairs. But until then, I will wear my bald head with pride, knowing that it represents those who have gone before and those whose turn has yet to come; those who walked bravely out in the world with their bald head covered or exposed; those who have survived and those who have not. We are all warriors.

At my 20th Harvard reunion last weekend

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This weekend marks an anniversary for our family. One year ago, my son Dylan’s PANDAS symptoms were at their most acute. It was a horrifying weekend in terms of his illness.  Although Dylan had received an anxiety and OCD diagnosis from a neuropsychiatrist and had been in Cognitive Behavioral Therapy for almost two months, his symptoms were getting worse. May 5-7th2017 will forever be etched in my mind. My then 10-year-old son was overtaken by forces I didn’t understand. His emotional state was in complete breakdown, and it took its toll on my physical state. I knew the lump I felt growing in my right breast wasn’t good, and I had a mammogram scheduled for the end of May, but with Dylan in crisis mode I couldn’t yet face what lie ahead for me. My focus was on my child.

As painful as it is to remember back to that weekend, it’s an anniversary I will celebrate. That May weekend also brought clarity and started us down our path of healing. I KNEW that there was something we were missing regarding Dylan’s health diagnosis, and I kept saying so to my husband, I just didn’t know what it was. On the morning of May 7th,I read a blog entry on Facebook that a friend had tagged me in several weeks before. It filled in the blanks for me. I read through the symptoms and risk factors for PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep Infections) and I knew that was the demon that had overtaken Dylan. I sat down with our family doctor five days later, we started him on antibiotics immediately, and two weeks later I had the mammogram that began my cancer-healing odyssey. Oh, what a year.

Here we stand, one year later. This year has taught me that so much of life is about perspective. Dylan’s still on antibiotics. I’m still in treatment. I’ve got 21 radiation sessions to go, 11 more antibody infusions, 1 eyelash left. But we are here. Compared to a year ago, we are doing incredibly well. We know the demons we’re facing. We have so many healing tools at our disposal. We are on the path.

While clearing out some of the junk that has accumulated over the last 6 months, I came across some writing I did this past winter, when our world was dark.


No space for long words or extended notations.

Energy goes towards staying warm; staying sane; staying on top of some things and not others; waiting for time to pass.

These eyes seek signs of healing; they recognize early symptoms. They glaze over at the breadth of experience of the PANDAS parent, and the lack of understanding that governs this landscape.

We circle our wagons, identifying triggers, requesting more lab work, enduring horrifying blood draws. We see behaviors that both terrify and fascinate us. We become experts at studying our children.

How will we release them?

The healing path is their own to follow. We can help clear the way with our research and our blood tests—we can try to understand the biology behind the backslides.

But in the end we cannot protect them from the bacteria. We depend on this symbiotic relationship.

It is only through activating the divine intelligence of the body that we can tip the scales in our favor. We must give our children’s bodies the tools to fight their own battles.

We must release them, but…how do we let go?

Guanacaste, Costa Rica

A Room with a View

Two days later I lost those shades to the surf

With my boys and my +1, Viv

Posted in Autoimmune illness, cancer, Energy, Family, gratitude, Healing, Health, Motherhood, Neuropsychiatric Disorders, Overcoming Challenges, PANDAS, PANDAS illness, Parenting, Personal Growth, Radiation, Reflections, Release, Strep Virus, Wellness | Tagged , , , , , , , , , , , , , , | 3 Comments

On the Threshold of Spring

“How are you feeling?”

I’ve come to hate that question. When I know it’s coming, I brace myself for it. I run through potential answers in my head, tossing some aside, tweaking others until I settle upon a response. Like a bald Goldilocks, it often takes a few tries these days until something feels just right.

“How are you feeling?”

However reclusive I may be lately, I still can’t avoid that question. It finds its way to me via email and voicemail, text and Facebook message. Even when the question isn’t posed to me directly, it’s lying there under the surface, expectant, waiting. It’s not that I don’t want people to know how I’m doing, feeling, performing, surviving. I’m an open person who often teeters on the edge of TMI. A natural health geek and certified health coach, I’ve chosen to share intimately about my healing journey. But how to simplify the enormity of this experience into a response well suited to answer that question? That’s what plagues me.

“How are you feeling?”

That question didn’t use to bother me so much. In my early stages of cancer treatment, I think the answer was simpler. In the month between diagnosis and chemotherapy, I self-treated the cancerous tumors I found in my breast. With the help of an array of natural healing modalities and supplements, I managed to create a fever in my chest. When the fever burned off, the tumors felt different—their energy had shifted, they felt less firm. Five days later I had 15 needles inserted into my breast and underarm during a biopsy procedure. The swelling from that procedure masked any tumor activity for nearly three weeks. On July 12th I started chemo as part of a clinical trial. On July 17th I noticed that the swelling from the biopsies had finally retreated, and I couldn’t feel the tumors anymore. My oncologist confirmed what I felt at my next appointment, but I would have to wait for statistical confirmation. That came on November 28, 2017 when my surgeon called to inform me that I had a “pathologic complete response” (PCR) to the pre-surgery treatments—no cancerous cells were left in the breast tissue or four lymph nodes removed from my body.

“How are you feeling?”

My attitude towards the last half of 2017 was “GFY cancer,” and “we shall overcome.” I dyed my hair platinum blonde, wore fun socks to chemo, participated fully in life. As part of a clinical trial, I joked that I was a poster child for the future of cancer care. The chemo drug I received was a targeted treatment, it went straight to the cancer cells and left the rest of my body mostly alone. Between July 12 and October 25 I received six infusions over 15 weeks. I hung onto my hair, managed my side effects with supplements, and had plenty of time between chemo sessions to schedule my complementary treatments (massage, acupuncture, naturopathic doctor, etc.). The more infusions I had, the more the exhaustion and neuropathy built, but with only a 6-treatment protocol, it was over before the side effects felt too overwhelming.

“How are you feeling?”

If you posed that question to me last year you likely found me full of confidence and light, empowered and inspired by the journey I was on. With all the great stuff going on, how could I help but have a positive response? Plus, it was summer and fall, and we New Englanders are always a bit more optimistic when the weather is nice. I was healing, Dylan was healing, our family had a short respite where we knew what was coming and we knew we could handle it. Looking back now I can see how much I savored those days.

We knew there would be more treatments after surgery. We knew that those treatments, a standard chemotherapy protocol, would be the most difficult on my body. Why keep treating if the cancer cells were gone? Simply put, this is my long-term insurance policy to not have the cancer come back. Every human who faces down cancer must also choose the tools we will use in our quest for healing. It’s an incredibly personal choice, and sometimes the weapons we choose to fight the cancer end up turning on us in the heat of battle. I’ve relied on my years of training as a health warrior to sustain me through the long months of treatment, and it has. But I’d be lying if I didn’t acknowledge the toll that these last few months have taken on me.

“How are you feeling?”

Today marks the eve of my last chemotherapy treatment. From this vantage point, I can see what a loaded question that is. “How are you feeling?” The short answer: I’m okay. The truthful answer: It’s incredibly complicated.

As often as I remember, I feel grateful for the fact that I’m still here. I’m winning the battle. My weapons of choice have not turned on me. Although uncomfortable and inconvenient, the side effects I’m experiencing are so far not threatening my long-term health in any way. Although expensive, this experience will not bankrupt us.

For 11 weeks straight I’ve reported to duty at the Milford Dana Farber, 30 minutes from home. I submit to blood draws, report on side effects, chat with my nurse. Since 1/2/18, Chemo Tuesdays have been my constant, the one thing I can count on…except when last week’s blizzard moved my treatment to Wednesday. New England problems.

According to my doctors and nurses and complementary therapists, I’m sailing through treatment. My body has handled the chemo drugs well, I don’t resemble the typical cancer patient. I have plenty of fuzz on my shaved head, my eyebrows and eyelashes are diminished but intact.

“How are you feeling?”

The challenge with cancer treatment is that it doesn’t exist in a bubble. I have a life, obligations, a bucket list. There are creatures in my care, humans and animals who require daily attention, whether I feel up to it or not. Acutely aware of the impact this illness and its treatment can have on my children, I do my best to shield them. I show up to school events, celebrate birthdays, vow to keep their lives as normal as possible. I do as much as I can, as well as I can, hoping that it’s enough, retreating when it feels like it’s too much. Despite my best efforts, I leave some disappointment in my wake. I pray that any damage is reversible. I try to remember that it won’t always be like this, soon this will feel like a distant memory. I often forget.

Life didn’t pause when I started these 12 weeks of chemo. These last 12 weeks have been some of the most difficult of my life, even without the chemo. I’ve mourned the loss of a father-in-law and watched my family grieve. I’ve watched my children struggle with health issues, some known to us, some still uncertain. I’ve made urgent calls to two different vets, for two different animals, learned that guinea pigs can get breast cancer too (more often when they’re inbred), and that elderly cats sometimes faint from getting up too quickly. Aiming to be proactive, I planned rest days and spa days and days to do my taxes, only to have them superseded by wind storms and snow days and days with no power. Over and over again I’ve been reminded of the fragility of life and the uncertainty of tomorrow. Painfully present to “this moment is all that I have,” yet spending my days waiting for time to pass, waiting for spring, waiting for tomorrow.

Tomorrow is here.





3.19.18 On the Threshold of Spring

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Ode to Mon Cher Philippe 6/4/1951-2/5/2018

This tribute was written in the days immediately following the passing of my husband’s stepfather Phil, after a brave battle with cancer. Phil received his cancer diagnosis on the same day I started this current round of chemotherapy, 1/2/18. It was shared at his memorial service on 2/8/18. 

February 5, 2018: Today is a morning of loss. We are New Englanders, so there is the obvious loss of our team in the Super Bowl last night. Monday morning + Super Bowl loss = grouchy Massholes. But in the great physics project that is life, every loss over here triggers a celebration over there. The higher our upswings, the deeper our lows. All we can do is learn to ride the waves.

On Monday February 5, 2018, our family experienced a loss that hurts more deeply than being on the losing end of a football game. Philip J. Maggio passed peacefully at 4:11am, surrounded by his loving family. As we process and grieve and feel all the feels, we will also celebrate his life. From Punxsutawney Phil to the Philadelphia Eagles to mon cher Philippe—this was the weekend of Phil.

Born in 1951, Phil embodied the values of that decade. He was a true gentleman, in word and in deed. Phil loved his family and spent many peaceful weekends with us gathered at his home. Phil was never the rowdiest guy at the party—that would have been difficult with the company he kept (I’m looking at you, Jerry & Joe). You could find Phil drinking his black coffee, watching the activity around him, chatting with the ladies in the room, asking the guys if they were “behaving” (they weren’t).

Phil was a kind and gentle soul, content to watch history shows and play online slots while his wife Lorry played in her weekly golf and tennis leagues. On weekends filled with the energy of grandchildren, Papa found ways to share special time with all of them. Dylan and Papa liked to sit quietly and watch science shows together. Brayden loved reading with Papa when he was younger. Gianna, 4-year-old bundle of energy that she is, loved sitting with him, hugging him, and jumping on him. Always ready to laugh, Cooper was his tickle buddy. And Kenadee, just two at Phil’s passing, liked playing games with Papa.

Christmas was Phil’s favorite time of year; he loved decorating and having the family all together. Aiden will always remember the Christmas of 2017 since it was the last Christmas we had with Papa. Phil and Lorry took all the grandchildren to Santa’s Village at the end of last summer. Cooper loved riding the rides with Papa; he just adopted a reindeer in his Roblox game in honor of Papa’s favorite animal.

Another love of Philip’s was cruising. He and Lorry always had their next cruise booked. He was passionate about sharing a cruise with his family. In June of 2017 Phil and Lorry made that dream come true. He proudly gathered all 18 of his immediate family, part of a larger family group of 48, on the Norwegian Breakaway to Bermuda, and we got to see the world through his eyes for a week. Some of his grandchildren’s favorite memories with Phil have come from that cruise. Brayden loved doing the ropes course with Papa cheer- ing him on. Dylan, fresh from his own health diagnosis, found his freedom and footing again on the Breakaway. Phil informed me he ran into the “gang of four” (Aiden, Dylan, Brayden, Cooper) on an elevator, headed down to a floor they had no business being on. Despite the challenges we faced at the time (the cruise was planned for the week between my biopsy and diagnosis), we came together for a week of celebration, exploration, and connection. We set sail on Phil’s 66th birthday. We are so grateful for that time together.

As we prepare to honor and celebrate the life of Philip J. Maggio, we are constantly reminded of his kindness. Phil’s epitaph: “He was a good man.” Granddaughter Mikalyn remembers that Phil always went out of his way to talk to her when she visited. As someone who struggles with anxiety, she often stays to herself and shuts others out. Despite all that, Phil would come talk to her, offer her food, and make sure she was fine. Tristen, the eldest grandson, also remembers Phil’s kindness. He did his best to make sure that Tristen, a step-grandson, felt like part of the family. Tristen is sad that Kenadee, the youngest grandchild, may never fully realize what a great and kind person her Papa was. He took care of his family, he met his obligations, he did his job.

In February of 2018, Phil planned to retire. As we grapple with his loss, we also see the courage that Phil must have called upon to stay with us as long as he did. Phil had a quiet strength about him. We jokingly called him “Party Phil.” When he and Lorry moved up the family cruise to 2017 instead of 2018 (the original plan), I affectionately poked fun at his belief that he may not make it to 2018 by calling him “Eeyore.” On the outside we could see nothing wrong. But Phil knew that he was fighting something, and he was determined to stick around until his family was taken care of. In the last few years Phil saw both of his children married; his son Paul has found success at the company he was set to retire from. When his grandson Brayden faced leukemia in 2011, Papa was there to help Brayden heal. And when I faced my own cancer fears last June, Phil pulled me aside on the cruise ship and shared his strength with me. His message: if you believe you can heal, you can. You got that right, Party Phil.

Philip Maggio, stubborn and proud Italian man that he was, went out on his own terms. Looking back now, 2017 was a year of closure. Not wanting to leave his wife in debt, he waited to retire until he had fulfilled some last financial obligations. In November he buried his mother. In November and December we gathered for one last Thanksgiving and Christmas with Party Phil. His family laughed hysterically as he read aloud the explicit sayings from “Cards Against Humanity.” Rest in peace, mon cher Philippe. Your work here is complete.

Written with love and affection by his daughter-in-law, Danielle



Philip J. Maggio  |  1951-2018

IMG_0615 (002)

The Family Cruise To Bermuda | Norwegian Breakaway | June 4, 2017 (Phil’s 66th Birthday)


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Disco Balls & Diana Ross:  A “Coming Out” Party

When we think of a cancer patient, the image of a bald head inevitably is part of that picture. For cancer patients ourselves, hair loss is a reality we must face. Even if we choose to embrace the hair loss as a sign of healing (it means the chemotherapy treatment is working), it still hangs over us as we journey towards healing. Will I lose my hair? When will it happen? How will I handle it when the time comes? What does my head look like under there? How will people react to me?

For the first six months of my cancer treatment, I felt like I was walking around with a big secret. I bet those kids dancing next to me at the Deer Tick show had no idea I was a cancer patient. It’s like the time my water quietly broke while I was perusing the pineapples at Whole Foods. It was kind of a big deal and I felt like I should tell somebody that my baby was on his way, but I didn’t want to freak out the produce guy. If my water had come gushing out, it would be a different story—everyone would know. If we quietly fight cancer and manage to keep our locks out of it, we can cruise through the world, hiding in plain sight.

And yet what does it mean to lose our hair? Why does that happen for some patients and not others? The chemotherapy drugs I received in the summer and fall were part of a clinical trial. They were testing the use of those drugs in the pre-surgery (neo-adjuvant for all you science minds) setting. It was a targeted therapy, going straight to the cancer cells in my body and (mostly) leaving the rest of my cells alone. I completed six infusions and didn’t experience any noticeable hair loss.

For more traditional chemotherapy drugs, they work by targeting rapidly dividing cells. Cancer cells divide rapidly; so do hair, nail, and those in the GI tract. My Naturopathic doctor (ND) told me that hair loss is a therapeutic response; it means that the chemotherapy drugs are working. I don’t go to Dana Farber every Tuesday for the free apple juice, I go there for the intravenous drugs. If losing my hair means that my time is well spent, then bring it on.

But then they tell you: not everybody loses their hair. Sometimes it just thins out. And different chemotherapy drugs impact hair differently. There are fancy new devices called “cold caps” available now—they can help preserve your hair. But they too come with a cost—they’re in limited supply, only at the Boston Dana Farber, cost money, require a longer infusion time, and you can’t cut, color, or otherwise agitate your hair for the months you’re in treatment. So much hullabaloo about the hair!

When I started my post-surgery infusions on January 2nd, I knew that hair loss was likely (although not everyone on this chemo protocol experiences it) and I was told to expect it by the 6th treatment if it were going to happen. Waiting to see if my hair will fall out is one more odd experience in a string of very odd experiences. It started to happen over the weekend between treatments three and four. One day I pulled out six hairs together—game on. The 4th treatment on Tuesday 1/23 accelerated the process, and I booked my wig and shave appointments for Friday 1/26, a week ago today.

In 2015 I cut 10 inches off my hair (donated to Pantene Beautiful Lengths) and rocked a pixie cut for the first time. I was in health coaching school, had given up alcohol for the year, and felt strongly compelled to try on a really short hairstyle. It took some getting used to, but I did, and I liked it. I started growing it back out in early 2017 and was just about to hit the awkward stages when I received my cancer diagnosis. Heal from cancer AND deal with awkward hairstyles? No thank you! Jessica (my hairstylist) trimmed it up again and encouraged me to go platinum. If I’m gonna lose my hair anyway, why not lose rock star hair? This time in my life can be described in many ways—“the year I went platinum” is one of them.

When I realized this hair was going faster than I expected, I didn’t mourn the loss of my hair in general. Hair loss = chemo works, I’m on board with that. Waiting for your hair to maybe fall out isn’t a great time and feeling like your hair is falling out while you’re in the middle of a conversation with someone is really bizarre. I wasted no time in booking those appointments. As Friday approached though, I felt a bit sad that my rock star hair didn’t have one last night on the town. I don’t plan to go platinum when my baby hair grows back in; I may never be platinum again. Lucky for me, my rock star hair hangs with a cool crowd, and we were invited to a show last Thursday night. My friends hooked me and my hair up with VIP tickets to the Foundation Room at the House of Blues to see Greensky Bluegrass. Boom! Don’t fight the Powers.

My dear friend Daphnee offered to meet me at the wig shoppe for support. Her son Benny was home from preschool, so he came too. Three is a party, so I brought party favors. Wine glasses and sparkling seltzer for the hair salon (juice boxes for Benny!), a theme song for my hair’s “coming out” party, and a rotating disco ball light bulb. It’s not every day a gal gets to shave her head and start over. It seemed a milestone more worthy of a celebration than a crying session.

As I drove down to Cranston (where the fancy ladies go!), I listened to the words of Diana Ross’s “I’m Coming Out” (my hair’s theme song, obvi) with fresh ears. Miss Ross was onto something. Forget just the shaving of the head party, this could be a theme song for the whole cancer party. Give it a listen this weekend if you have a moment.

“There’s a new me coming out
And I just had to live
And I just want to give
I’m completely positive
I think this time around
I am gonna do it
Like you never knew it
Oh, I’ll make it through”






Posted in cancer, chemo, Dana Farber Cancer Institute, Energy, Experiences, Friendships, gratitude, Healing, Health, Life Passages, Music, Overcoming Challenges, Personal Growth, Release, weird | Tagged , , , , , , , , , , , , , , , | 5 Comments


Things I am grateful for today:

Our health insurance.

The Dana Farber Cancer Institute doctors, staff, volunteers and donors.

That my illness is universally recognized to exist, and there’s a variety of treatment plans with proven success rates, and my insurance covers most of these treatment plans. This is not the case with many other illnesses, including PANDAS/PANS and chronic Lyme disease, two battles currently being waged by those near and dear to my heart.

My bathtub.

That plant that grows in the ground and has been around for as long as humans have, that happens to have many superpowers, one of which is to kill cancer cells. Pharmaceutical companies can’t synthesize the many fabulous benefits of this plant. Oh, and the federal government gets nervous around such awesomeness, so it made it illegal.  Yeah, that one.

My husband.

The smoothie delivery service we started using last week. Game.Changer. (for $20 off an order)

My cat.


Today I can feel it—all of it. I can feel the $70,000 or so worth of cancer-fighting drugs moving through my system (gratefully paid for by our insurance). I can feel the strain of standing firmly for the health and wellness of my family while also fighting for my own. I can feel the impact of the restless nights and steroid-fueled days. My hair follicles are itchy. My GI tract is upset. My body aches and shivers. Today I will surrender to the intensity of this week’s treatment. Today I will allow myself to rest and release. Today I will retreat to my cocoon. It is not yet time to become a butterfly.


Posted in Autoimmune illness, cancer, chemo, Dana Farber Cancer Institute, Energy, gratitude, Healing, Health, PANDAS, PANDAS illness, Personal Growth, Release, Retreat, Steroids | Tagged , , , , , , , , , , , | Leave a comment

Trench Vibe

winter winds whip on the front lines of all things
health + wealth + being + nothingness + that which lies within

mindfulness on steroids, escaping deeply
alert and ever watchful, losing sleep

focused when it’s called for: track, weigh, record
we watch and we wait, apply and observe
we are learning so much

we are a unit, team, organism
we are biotic: probiotic, symbiotic, antibiotic
our dance has a rhythm all its own

ebbing, flowing, stretching, growing, we crawl our way through each day
we exhaust ourselves
we rest, reconnect, regroup

our trench has headaches + heartaches + muscle aches aplenty
we fly under the radar yet demand all of your attention

we rejoice when life feels peaceful and balanced
we fight for those days with more laughter than tears
we feel pain deeply and not just our own


Our Sunday finest

Posted in cancer, chemo, Daily Life, Energy, Experiences, gratitude, Healing, magic, Motherhood, PANDAS, PANDAS illness, Parenting, Personal Growth, Poem, Release, Retreat, Steroids, Wellness | Tagged , , , , , , , , | 4 Comments