Steroids and Spa Days

It’s just after midnight and I am awake. Last night at 1:46am I ordered a “make your own smoothies with our pre-measured ingredients and recipes” delivery service, scheduled to start next week. That would be the steroids.

I didn’t have any steroids with my first 6 rounds of chemo, the ones before surgery. I was on a clinical trial for a targeted chemo drug, and it had less severe side effects that didn’t warrant preventative measures against allergic reactions. Because I chose to participate in the clinical trial I’m now doing the protocol I would have done before surgery.  Its initials are THP. The T stands for Taxol, the main chemotherapy drug. It’s made from the bark of the Pacific Yew Tree. A Dana Farber nurse who had been around for a while told me that years ago they would still find little pieces of bark in the medicine. I will receive Taxol by infusion every week for 12 weeks.

The H in THP stands for Herceptin. That’s not technically a chemotherapy drug, it’s called a “monoclonal antibody.” The cancer cells I had were HER2+ (a specific type of receptor on the surface of the cell), and this drug is really good at hunting down those cells and preventing them from growing. I will receive this antibody infusion every 3 weeks for a year.

Finally, the P in THP is for pertuzumab or Perjeta, depending on who you’re speaking to. Perjeta is the brand name. This was part of my pre-surgery chemo regimen, it’s another type of monoclonal antibody. This will drip into my veins every 3 weeks for the 12 weeks I get the Taxol—I think. It’s still early in the game, and I’m still learning all the rules.

New rule: while you’re busy looking out for chemo side effects, you may be in a ‘roid rage and not even realize it! Because you totally forgot that you took steroids on New Year’s Day in preparation for your January 2nd infusion!

There are many pieces of good news in this post, and they may not be obvious, so I will clarify:

  1. I start this phase of treatment knowing that I had a pathologic complete response prior to surgery—no cancer cells left where there used to be lots. Things look very different from this scenic viewpoint.
  2. My intention was to have a treatment plan that I could agree to. If I hadn’t done the clinical trial prior to surgery, I would have already done THP and wouldn’t be eligible for it post-surgery. The Dana Farber doctors would have recommended I do a chemotherapy protocol with the initials AC. Nickname: The Red Devil. From what I’ve read, it sounds like it knocks you down real hard while you’re in it. But the issue I would have in accepting this protocol is that the side effects follow you for life. I could drop dead in 10 years from heart failure, all because of that chemo I did back in 2018. As an oncologist friend of a friend described it: “It super sucks.”
  3. The THP protocol has side effects too, some serious (heart damage, severe muscle aches), some just annoying (nosebleeds, neuropathy). I’ll have echocardiograms periodically while in treatment, to make sure my heart is holding up okay (so far, so good). And when I’m done with treatment, the side effects end. They don’t follow me forever. Cheers to that.
  4. Because this is a standard protocol, I can do it at a Dana Farber satellite site, which is a HUGE deal when you’re going every week. I live 30 minutes from the Dana Farber in Milford, and that includes traffic. My community acupuncture place is also in Milford, and there’s a Whole Foods in the next town over. The facility itself is much smaller, parking is easy and free, and I can get reflexology treatments and hand massages while I’m in treatment. Um, it’s basically a spa. I will trade the 5 star cafeteria at the DFCI Boston campus for easy peasy lemon squeezy ALL DAY LONG.
  5. I can drive myself! I am so very grateful to all of the lovely people who took me on chemo and movie dates in Phase I. But those were every 3 weeks, and there were only 6 of them. This is every week for 12 weeks, during Jerry’s busiest season at work. I roll from treatment to Whole Foods to home, all within school hours. Bam!

Tuesdays are my treatment day. Which means Tuesday night and Wednesday are my super duper productive days because…steroids!! I’ve taken steroids before, when I had a horrifying reaction to poison ivy back in 2012. I was so distracted by my desire to peel the skin off 1/3 of my body that I must not have noticed the ‘roids as much. Or maybe because I was actually in a state of allergic reaction, the steroids were a welcome relief. If I’m not reacting to the Taxol, does that mean the steroids have nothing better to do than to make me feel totally whacked out at various points throughout the day? Don’t get me wrong, Danielle on steroids was super helpful last Wednesday as we prepared for a blizzard to arrive. Do steroids amplify our strongest traits, or our most intense neuroses? Let’s just say that my lists have lists and the three boys that I live with are on notice. Don’t cross mama in a ‘roid rage! Oh, and my brain won’t shut off. Which is why I’m here with you and not sound asleep like the rest of my household.

I went to a “Look Good, Feel Better” workshop today at my DFSpa. Myself and another lady got makeup tips, scarf tying lessons, and wig catalogs from a Hawaiian transplant named Toni (it’s her first winter here—yikes). Loads of companies donate products for us gals, everything from cleansing towelettes to nail polish to eyebrow pencils. Unfortunately most of those products contain cancer-causing chemicals (Hint: don’t give the ladies who lean towards cancer products that cause cancer), so I left them behind. Toni gave us some tips on selecting a wig, and she asked for a wig model. I’m not a big selfie girl, but this seemed to good an opportunity to pass up.

Note: these were not my wig choices, just the ones she uses to show people what to look out for.

Toni says that synthetic wigs are way easier to care for, less expensive, and tend to look more real. Who knew?!

This is a wig made of real hair by Pantene Beautiful Lengths. I donated 10 inches of hair twice to Pantene Beautiful Lengths. Apparently they make terrible wigs with really awkward parts (see photo above), which is a damn shame.

That’s our fearless leader Toni! And that is a tricky little fringe that you add to your hats so you don’t have to deal with a whole wig setup. Those crafty folk!

Posted in cancer, chemo, Dana Farber Cancer Institute, Experiences, gratitude, Healing, Health, hospital, Steroids, weird, Wellness | Tagged , , , , , , , , , , , , , , | 6 Comments

The Land of Possibility

Ahhh, 2017, the year when the seemingly impossible became possible (for so many of us, in so many ways). As this year comes to a close, and as I personally have some major hurdles now behind me, I find myself reflecting on some of the choices that I made. Why did I approach this problem that way? What compelled me to follow one path and not another? Given all of the information that I have now, would I do it the same way again?

On 11/17/17 I underwent a lumpectomy, or breast conservation surgery. It was an outpatient procedure, 6 hours total from our home to the hospital in Boston and back. The surgery was a success on many levels. In late June I tested positive in one lymph node (although, with the information we now have post-surgery, my surgeon believes I had cancer in two lymph nodes, known as a “local invasion”). Because I had tested positive prior to treatment, there was a possibility that I would receive an “axillary dissection” while under anesthesia; it all depends on how the lymph nodes test while surgery is being performed. In an axillary dissection, the surgeon removes all the lymph nodes in a triangular area under the armpit. Every body is different, and that could mean as little as six lymph nodes, or as many as 26 (the range they’ve seen in previous patients). As the lymphatic system is responsible for filtering waste from the body, keeping as many lymph nodes as possible was kind of a big deal for me. I awoke from surgery to learn that my lymph nodes had tested negative–hooray!  They removed four “sentinel nodes” (the ones responsible to drain the cancer), which is the current standard of care in breast cancer surgeries.

For 11 days post surgery, we waited. While we waited, I healed, my family carried all my heavy burdens, we gathered with friends and family on our national holiday intended to give thanks. On the evening of 11/28/17 I received a call from my surgeon—it was good news. The pathology was back on the tissue and lymph nodes they removed from my body, and there were no cancer cells to be found. We had our clean margins (and then some) and no further surgeries would be recommended at this time.

I went into Dana Farber on 11/29 to meet my surgeon and oncologist for my follow-up appointments. The surgeon reiterated what a huge win this was on my journey, to have a pathologic complete response (pCR), with no cancer left in the tissue that we knew was cancerous six months prior. Jerry and I basked in the glow of this win for the few hours between appointments. We went for a walk, enjoyed brunch, stopped in a beautiful church on the way back. I felt incredibly peaceful.

Four hours after sitting down with my surgeon, we met with my oncologist. She also congratulated us on our win, and then detailed the post-surgery treatment recommendations: 12 weeks of chemo, followed by 6 weeks of daily radiation, rounded out by 39 weeks of an antibody that fights the specific type of cancer cells that were found in my body. All told, my social calendar will include appointments for cancer treatment through late 2018/early 2019. Cheers!

Learning that I was “cancer-free” and then learning the intensity of the treatments that still lay ahead has been difficult for some people to understand. I took a few days to process the information and to do some research online. What I’ve come to understand is that I’ve been very good at focusing on what is immediately in front of me, rather than worrying about what lay down the line. From June 13th forward my mission became to rid my body of cancer. I went into action the moment I was diagnosed, a full 29 days before my first chemotherapy treatment. For my purposes, it didn’t matter what kind of cancer cells I had, or how far they had gone, or how fast growing they were. What mattered was that I evict them from my body by any and all means at my disposal. Although I had already undergone a mammogram, ultrasound and biopsy through my local hospital, the specialists at Dana Farber like to double check things. They sent me for biopsies, ordered scans and analyzed tissue samples. As the results came back, many of them different than what I had originally received, my mission remained the same: kick cancer out of my body. Early July brought the news that I had two tumors, not one; I had grade III cancer cells, not grade II (grade III is the fastest growing types of cancer cells); the cancer cells in my body were strictly HER2+, not also ER+ (straight HER2+ is a more aggressive type of cell); and the cancer had spread to at least one lymph node, despite there being no physical indication of that in my clinical exams.

These had the potential to be very dark days. Some of them were harder than others, especially for those around me who didn’t inhabit my body, and couldn’t feel or know what I felt or knew.  The darkest day for me was June 23rd, the last day of school for my children, the day I told them I had cancer.  I physically felt terrible, which is unusual for me—throughout this cancer journey I’ve normally felt pretty good. Maybe I felt so unwell because I could finally acknowledge this illness in front of my kids? Or perhaps because I could fully feel the weight of the journey ahead? Having just met my doctors at Dana Farber on June 21st, I had not yet done the scans and biopsies that would reveal the true aggressiveness of the cancer I was facing. I didn’t yet know the “facts” of my situation. Filled with fear and uncertainty and physical pain as I lay in bed on the night of the 23rd, I knew I had a choice. I had to take control of the story that I was creating. On the darkest of days, I chose that this would be a story of healing.

The next few weeks were filled with appointments. I endured mammograms, ultrasounds, a bone scan, CT scan, and echocardiogram. On June 29th, Dana Farber biopsy day, I had 15 needles jammed into my breast; I learned that day that cancer bleeds, because of all the blood vessels the tumor has hijacked to feed itself. The swelling and bruising from that procedure stayed with me for 2 ½ weeks. During that window of time I couldn’t feel what was happening with my tumors; when I started chemo on July 12th, my doctor still couldn’t get an accurate measure. But I held fast to my story of healing, even as the results of the biopsies came back indicating that my breast cancer profile was as aggressive as they come.

On July 17th, five days after my first chemo treatment, the swelling from my biopsies finally went down, allowing me to feel what was going on in my chest. I did not feel any tumors. On August 2nd I went for my second chemo treatment, and my oncologist confirmed that she also didn’t feel any tumors. The bloodwork I had throughout this process all came back excellent. In the months leading up to my diagnosis, I felt the cancer in my body and I felt the energy of the tumor growing. On Saturday June 24th, the day after I consciously changed my story, I felt that energy lessen. In the space of fear and pain that I felt that Friday night, my brain wanted to think that I must feel so terrible because this is what it feels like when cancer is spreading. Creating the future from that space was not going to be good. In a conversation with Jerry I actively transformed the story from “this is what it feels like when cancer is spreading to “this is what a body feels like when it’s kicking cancer out.” The next 24 hours brought about a healing crisis, triggered by the numerous healing modalities I pursued while waiting to start chemotherapy. I ran a fever localized to my chest.  When the fever broke, the tumor felt different, less dense, less energetic. The mind-body connection is a powerful mechanism to behold.

At the time of diagnosis, it wasn’t helpful to dwell in how aggressive my particular cancer cells were. It was difficult to believe that I had cancer AT ALL; I chose to ignore that I had all the characteristics of a very aggressive cancer profile (HER2+ and grade III cells, a young age, local invasion). I barely read the multiple books I ordered online or checked out of the library. Of the multiple opportunities I had to connect with survivors (friends of friends, former classmates, or through Dana Farber support communities), I only ended up speaking to two. There were a few days when I could really have used that support, and on those days I wasn’t able to make the connections for a variety of reasons, all out of my control. By the time those connections were widely available to me, I no longer felt compelled to pursue them. I had faced the depths of fear and crawled my way back to the surface. The healing had begun.

From where I stand now, I believe that I didn’t feel a strong need to connect with people about their cancer experiences because a lot of people have not had great experiences with cancer. The amount of fear and sadness that encompasses a cancer diagnosis can be overwhelming. Those of us who have heard the words “you have cancer” join a club that has existed for as long as we’ve been able to study humans. Archeologists have found evidence of cancerous tumors in the remains of Egyptian mummies, along with evidence that those tumors were cauterized—cancer treatment has been around for a long time.  Hippocrates was the first person to coin the name cancer (he lived from 460-370 BC)—he called cancerous masses karkinos (the Greek name for crab). I recognized early on in my own cancer journey that, as a cancer patient, I inherited a cultural conversation that had been passed down for thousands of years. For many of the patients who came before me, cancer did NOT go well. I can see now that in my early days of cancer diagnosis, it was just as important to fight off the cultural conversation as it was to heal from the cancer cells.  I did not want to dwell on “what has happened to those before me.” I chose to test the limits of what’s possible. If I didn’t know what was “expected” or “typical,” then I could hang out in the land of possibility. It’s there that I found my power.

As I prepare to embark on the next phase of treatment, I’ll continue to hitch my star to the conversation around what’s possible. Am I delusional? Maybe. But it works for me. So much of healing from cancer or any major illness is a mental game. What stories are you telling yourself about your body? Is your body failing you or is it protecting you? Is that pain caused by a worsening illness, or is that the pain of a healing crisis? I don’t say this to diminish the experience of those who have gone before me. I’m not here to judge their journey, only to share my own. I like to think that we all have a purpose in our lifetime, and sometimes that purpose is served in death; for others, it is served in life. Sometimes the illness overwhelms the body and it is time for the body to release the soul. And if that had been my path, I hope that I would have chosen to travel it with power and strength and dignity.


This post is dedicated to the millions of people who have gone before me. I am grateful for your sacrifice and contribution to our current understanding of cancer and its treatments.


Family photo, Christmas Eve 2017


Cooper with Santa. Cooper single-handedly inspired all of our Christmas spirit this year.


Christmas Eve sunset in Providence, RI


Dad Bod Fanny Pack + Santa suit + Adorable 7 year old = Winning.


A Christmas tradition…Jerry reading “‘Twas the Night Before Christmas” to the boys


Merry Christmas! 

Posted in cancer, chemo, Dana Farber Cancer Institute, Energy, Healing, Health, Intuition, Overcoming Challenges, Personal Growth, Release, Wellness | Tagged , , , , , , , , , , , , | 6 Comments

A Storm it was A-Brewin’

We’ve had a fairly peaceful 5 month stretch on the PANDAS front.  For anyone who may have missed what that is, it stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.  In children with PANDAS, instead of successfully fighting off strep, the body’s own strep antibodies cross over the blood brain barrier (which becomes permeable in the presence of the inflammation that happens during an active infection) and attack the brain.  With the brain under attack, PANDAS-afflicted children develop neuropsychiatric symptoms like Obsessive Compulsive Disorder (OCD), Oppositional Defiant Disorder (ODD), Disordered Eating, Motor Tics, Anxiety, Aggression, Depression, Sensory and Sleep Abnormalities, Behavioral and Developmental Regression, and more.  Trust me when I say that, as a parent, it’s a heartbreaking and terrifying experience to watch your child go through.  One of the biggest problems with this illness is the lack of awareness.  Many doctors, therapists, psychiatrists, teachers, and parents don’t even know it exists.  Try looking on Amazon for books related to PANDAS the illness—I’ve only found five (and two of those are children’s books). Some children never get an accurate diagnosis.  Even with an accurate diagnosis, recovery isn’t a walk in the park.  Dylan started antibiotics on May 12th, the day I rolled into our primary care doctor’s office with my suspicions of PANDAS.  Thankfully he started improving within two weeks, and I was able to turn my attention to my own health concerns.

While I focused on saving my own life, the antibiotics worked their magic.  Within 10 days he was able to occasionally skip his compulsive nightly shower. By mid-August I felt like the scales were tipping with regards to his mood.  Lightheartedness found its way back to my son. Last winter and spring, his mood was very heavy, all the time. There was no joking with him, he no longer smiled or laughed with ease.  It was an incredibly difficult time for all of us.  Cooper lost his buddy.  We were all targets of Dylan’s frustrations and upsets, but he turned his wrath on himself more than any of us. Again, heartbreaking.

Spending so much time together during the summer will test the strongest of sibling bonds, never mind when PANDAS is part of the equation. As summer vacation drew to a close, I could feel Dylan’s anxiety increase. School started on September 5th, Dylan’s 11th birthday, and although I was grateful for a bit of quiet on the home front, I too was nervous about Dylan’s return to school.  Spring 2017 had been a nightmare for us, the most challenged I’ve ever been as a parent and he’s ever been as a child and student. With strep antibodies attacking his brain, even the most basic academic tasks were difficult to complete. For the first few days of school, I anxiously awaited news from Dylan’s day.  I can imagine the fear and anxiety he must have felt. Would it be like it was in the spring? Or had things truly changed over the summer months? When my boys arrived home each day I was greeted with smiles. As they played afterschool I kept listening for sounds of arguing or upset. Those sounds didn’t come. What I heard instead was JOY. It wasn’t until joy returned to our household that I realized it had been gone.

In September and October we settled into a familiar routine. Every morning Dylan took his vitamins and probiotics, every night he took his antibiotics and anti-inflammatory meds. Every three weeks I went to Dana Farber for chemotherapy infusions. We knew what to expect, at least until the end of October.  November would bring surgery, pathology reports, and plans for next steps. But in September and October our lives were stable, and for that we were all grateful.

On October 25th, I went for my final pre-surgery chemo.  November 1st brought my follow-up bloodwork, mammogram, ultrasound, echocardiogram and visits with my oncologist and surgeon. Mid-to late November would bring with it surgery and recovery. We were all on edge about what was to come. Right around Halloween I noticed a change in Dylan’s temperament.  In PANDAS speak we call such regressions or backslides “flares.”  Was it the extra sugar from Halloween candy that triggered it?  Was it anxiety over my upcoming surgery?  Or was something else at play? With so many stressors in our lives this year, it’s been tricky to know exactly what’s causing what. At some point this fall, my children lost all patience with each other. Was it gradual or did it have a start date? Is it because I tried to change the fish oil gummies on them, and they didn’t like the taste so they stopped taking them?  Could that be the reason they were fed up with each other? In the haze of my own medical journey, I lost track of cause and effect journaling. By early December it was clear that a storm was a-brewing, I just wasn’t sure what.

Last Tuesday afternoon I picked the kids up from school. Cooper and I had a date for a blood draw. When someone in the family suffers from PANDAS, it’s important to check all the other family members (and the dog, if you have one) to see if anyone is a strep carrier. My doctor gave us lab requests for this on June 12, the day before I received a cancer diagnosis. It took me until December 12th to complete the task. On Tuesday evening Jerry and Cooper had a date to get our Christmas tree.  That’s when the storm hit.  After 3 ½ weeks of successful surgical healing and no issues, I spent the evening in the Brigham and Women’s Urgent Care.  The diagnosis was cellulitis (an under the skin infection) in my breast. With some IV antibiotics in my system and a 10-day prescription for some MRSA-fighting meds, I headed home.  Tree procurement was postponed to Wednesday night.

This past week has been full of steps forward and steps back. I would seem to be healing from my infection, and then it would flare up again, red and warm to the touch. On Thursday Dylan and I had our first appointment with a new therapist that’s trained in ERP (Exposure and Response Prevention), a necessary component to healing from OCD. Cooper came home from school on Friday in tears, sad because his stomach had bothered him throughout the day and he had spent a chunk of time in the nurse’s office. Jerry and the boys saw the new Star Wars movie on Saturday afternoon. Saturday night we finished decorating our tree. As Dylan hung the various ornaments he had made for us throughout the years, he looked sad.  I pulled him aside and asked what was up. My sensitive, thoughtful 11 year old son started crying and told me that seeing all the ornaments from when he was younger makes him think he was so much happier then than he is now. I hugged him and we cried together.

Sunday brought more ups and downs. The kids each had a school friend over, and we hosted “Little Dude-fest” here. They had epic light saber battles, video game showdowns, and sledding adventures. Despite all the fun times, Dylan’s PANDAS was flaring. By Sunday evening I was exhausted and depleted from my attempts to buffer Dylan from the world of upset and frustration. I had a 9am Monday appointment with our primary care doctor, to follow up on our families’ myriad medical mysteries. I spent Sunday night reading a guidebook for PANDAS, making notes, and preparing for our doctor visit. Desperate for relief from his symptoms, I started Dylan on CBD oil Sunday night before bed. It’s the same oil that my naturopathic doctor prescribed to me for cancer treatment.

I had planned to go to the doctor by myself, but when I woke the kids on Monday morning the first words out of Cooper’s mouth were “my stomach hurts.” In January 2016, Dylan had a strep infection that went undiagnosed because it presented as severe stomach pains. He never had a sore throat or a fever, and it took me a week before I brought him to the urgent care. That may have been the infection that tipped the scales in the favor of PANDAS.  I may never know. But I know now that strep can be asymptomatic and can present as just stomach pains, so I opted to bring both kids with me to the doctor visit. You know things are rough when the family member facing aggressive cancer and battling a post-surgery cellulitis infection is the “easy” case.

The results from my and Cooper’s bloodwork had come back. I tested negative for strep antibodies, but Cooper’s titers were in the 750 range (200 and under is normal). No wonder the kids have been at each other’s throats—Cooper is literally the trigger for Dylan’s PANDAS flare. Would Cooper’s antibodies have been that high back in June?  I don’t know. Is he a strep carrier or just fighting an active infection? I don’t yet know. Based on his symptoms, we’re treating it as an active infection. Cooper started a 10-day course of antibiotics yesterday. After dropping the kids at home, I zipped up to Boston to have my cellulitis infection checked.  Despite a rocky start, things improved over the weekend when I added in my natural remedies to help fight the infection.  A little high-powered antibiotic here, a little Echinacea and turmeric there, a lot of coconut oil spread on my skin. I am healing.

I returned home yesterday afternoon feeling tired and raw. I was NOT looking forward to the boys’ constant bickering. I’m grateful to report that we had an incredibly peaceful afternoon and evening.  The kids built a box fort above the garage.  Cooper kept calling himself “a carrier.” They laughed and played and supported each other, like the good old days. Maybe they were peaceful because they could tell I was hanging by my last thread, maybe the CBD oil had helped Dylan’s nervous system calm down, or maybe it was the realization of how integral we all are to each other’s health. May we have more peaceful energy in the days and weeks to come.


Ornaments through the years.


A 6 year old Dylan, full of joy.


To fight the strep monster, I’ve spent most of today disinfecting every possible surface in my house, stripping beds and pillows, and doing laundry. SO. MUCH. LAUNDRY.

Posted in cancer, Energy, gratitude, Healing, Motherhood, Overcoming Challenges, PANDAS, PANDAS illness, Parenting, Strep Virus | Tagged , , , , , , , , , , , , | 2 Comments

Into the Mystic

My silence on here shows up in my reality in certain ways. It means I’m holding on very tightly to life. It means I’ve probably stopped writing. For me writing brings release and flow and transformation. When I’m holding on tightly to life I don’t want flow, I want life to be static. I want to NOT GO ANYWHERE. I want to stay where I am because where I’m going is unknown and it may not go well. At least where I am is somewhere I’ve come to accept: I’m okay here.

Holding on tightly makes my body ache. I stop stretching. My skin reacts to things and little patches of eczema pop up. I eat poorly (for me) and my body feels imbalanced. A detox specialist explained cancerous tumors to me as the body’s defense against too much acid. Now I have the distinction of alkaline vs acid to consider when my body feels out of balance. I wonder if that imbalance is feeding or creating cancerous tumors.

When I fight the flow I drink too much (for me). Inherited from my Irish heritage is a body that is extra sensitive to alcohol. I sometimes wonder if alcoholism is like an allergic reaction. The drinking is a coping mechanism. Again, probably inherited from my ancestors. Every year I choose stretches of sobriety to remind myself that I can have a say in how that gene gets expressed. Right now I’m settling into a 3 month stretch of sobriety to provide my body an optimum healing environment.

With a vice grip on life, distraction is my best friend. I resist connection to reality. I feel like my head is disconnected from my body: I’m a space shot, unfocused and yet constantly busy. I yearn for control and my perfectionist tendencies kick into high gear. My to-do lists have to-do lists.

Holding on tightly leaves me feeling uncomfortable. Something feels “off.” My relationships suffer. I experience contraction instead of expansion. I question myself on the inside while showing a brave face. I don’t want to be here and yet I don’t want to go anywhere. I’m full of contradictions. I feel trapped. Toxic. Heavy. Consumed.

This past weekend I went away for two days. Jerry joined me for one evening and one evening I took for myself. I needed to get out of my home (my workspace) if I had any hope of shaking this unworkable behavior before surgery. I needed to let go of the need to hold on. I had to create something new for myself. The surgery I experienced yesterday was a practice in release. Although my hand held no scalpel, I participated fully in my body’s release of the tumors and corresponding lymph nodes. In order to release, I needed to prepare. That preparation brought me to Mystic CT.

What I created on Monday 11/13 was this:

I feel grounded. Peaceful in the midst of chaos. Clear-headed. Aware. Intentional. Connected to the reality that I’m powerfully creating.

Yoga. Daily stretching. Walking. Movement. Checking in with my body. Meditation. Comfort. Peace.

Satisfied. Loving. Compassionate towards myself and others. Well-rested. Nourished. Adored. Accepting. Instinctual.

Challenged. Successful. Brilliant. Wondering. Conduit. Flow. Receptive. Blessed. Child-like. Mature. Wise. Playful.

Magnetic. Charming. Charismatic. Empathic. Trusting.

Gather. Grow. Courage. Release. Show up. Play big. Thought leader.

Flush. Cleanse. Alkaline. Balanced. Grounded. Real.

Light. Glowing. Grateful. Supported.

Sanctuary. Alone time. Self-discovery. Creation. Clearing. Release.

A note about numbers and dates:

I received my cancer diagnosis on 6/13/17. I immediately went into action to clear the cancerous cells from my body by any natural means possible, including reiki, acupuncture, cannabis treatment, alkaline/acidity balancing (I ate a lot of fruit), turmeric, oncology massage, supplements, journaling, mentally and verbally creating a new story for myself, and probably some other things I can’t remember right now. On 6/24/17 I created a “healing crisis” in my body–I ran a fever in just my chest area and when the fever broke I could tell that the energy of the primary tumor had lessened. On 7/12/17 I started chemotherapy treatment (a clinical trial that targets HER2+ cancer cells). Right around 7/17/17 I felt the swelling from my multiple biopsies (performed on 6/29/17) go down, and I noticed I couldn’t feel the tumors anymore. On 9/17/17 I celebrated my 41st birthday. On 11/13/17 I wrote the words above; for me that’s when I reconnected to reality and set my intentions for this next phase of healing. On 11/17/17 I released my tumors to the surgeon and the pathologists, and along with them all the stress and worry and unhealthy thought patterns or behaviors that have permeated my life for the last few years. Peace out, cancer…and all that you represent.

Posted in cancer, Energy, gratitude, Healing, Intuition, Life Passages, Overcoming Challenges, Personal Growth, Reflections, Release, Retreat, Wellness | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | 6 Comments

Love Thy Neighbor

As I shared on a previous blog, I mostly stayed off of social media for many months over this past year.  As our political climate heated up, so did our Facebook feeds.  I knew it wasn’t healthy for me to spend so much time dwelling in the rage and upset and sometimes hate that I saw posted online, from both sides.  For many years I was part of a movement called “The Sufficiency Movement.”  It was a group that practiced “being enough.”  Our thoughts are incredibly powerful and shape how we view our world. If we choose a scarcity mindset, what we will see all around us is what’s missing, what we lack, what we don’t have.  In the practice of choosing a sufficiency mindset, we focused on believing we are enough.  We pointed out the constant reminders from media and corporations that we need something more than what we currently have in order to be okay (prettier, thinner, more wealthy, etc.).  We practiced gratitude for what is currently so in our lives.

It may sound simple, but to really embrace this for myself every single day was not so simple.  As a Harvard graduate who speaks three languages (however rusty they may be at this point), I often felt that staying home with my children was NOT enough.  I did a lot of work to disentangle stories in my head about the choices I made as I became a parent.  I used to joke that I would be the working mom and my husband would be a stay-at-home dad.  But is that really what I wanted?  Would that really be the best choice for our family?  Or is that me rebelling against conversations I saw unfolding in our American culture?  These were the questions I had to ask myself.  It was never an easy choice for me, and I struggled with that choice for much of the past decade.  In January 2016 I can remember finally mentally and emotionally choosing the life I had physically chosen back in September 2006.  The rest of that time I dabbled in conversations about what I “should” have also been doing, or where I “could” be right now if I had chosen a different career path than mother and homemaker.  What I learned is that there is no power or peace of mind in the gap that exists between “this is where I am” and “that is where I should be.”  That’s not reality, and it’s not a fun side trip to the land of make-believe.  It’s where doubt and worry and dissatisfaction dwell.  The fact is:  YOU ARE WHERE YOU ARE.  I AM WHERE I AM.  Pretending that anything different is the case is just madness and will lead us all astray.

Here’s the good news:  when we acknowledge where we actually are, we can make a plan to move somewhere different—if that’s what we actually want.

When things got so heated with last year’s election, I remember feeling sadness that this is where we were as a country.  Sadness because it seemed that that which divided us had grown so much larger and louder than that which united us.  When I spend time online among my “friends” I see many different sides to many different conversations.  Sometimes I see sides that I don’t really like of people that I do really love.  It’s hard to un-see that.  I found myself feeling angry when someone I like would post something I really didn’t like.  I found myself saying things like “I bet he voted for _____” when I saw someone do or say something that felt offensive to me.  I started creating political divides with people when they were actually just exercising their right to free speech and their right to vote for whomever they chose to vote for.  I stopped liking the way that I was viewing people.  I felt healthier in my own mind, body, and life when I got offline and stopped watching so much political news (although it’s hard to escape it entirely) and got back into the real world.

It hit me one day in March of this year when I went to pick up the Cub Scout Pinewood Derby trophies.  I had been communicating via phone and email with a woman at the shop.  She was very kind and helpful, and I was a grateful customer.  We passed each other as I was entering the shop and she was heading out on her lunch break.  She greeted me very pleasantly as she walked by.  I did the same in return.  And right then I understood why I had taken a break from social media starting with the election:  I LOVE PEOPLE.

Here’s the thing:  I actually love humans of all kinds.  I bet you do too.  I love my fellow Americans.  I love people who live in other countries too.  I love them so much that I studied two other languages as my college major.  I wanted to be able to travel and communicate with people in other countries.  I love the illegal immigrants that I taught English to way back when I was 22.  I know how much they sacrificed to come to this country for a better life.  It was my honor to teach them what “PB&J” and “mesclun greens” meant so they could move from dish washer to salad maker at the restaurant where we worked.  I love immigrants with green cards.  One of them raised me into the woman I am today and instilled me with the belief that I could be anything I wanted to be.  I love people who have wildly different religious beliefs than I do.  Some of them are in my family.  I love people who have different political ideas than I do.  I welcome them into my home and share wine, tea, and conversation with them.  I love Veterans.  I was raised by a veteran and I’m grateful for his service to our country even though it wasn’t his choice.  I love people in the LGBTQ community.  I have some of my fondest memories with people who fall into that group.  I grew up seeing people of ALL abilities, as my father worked with these people.  I grew to love them even though as a 5-year-old I didn’t fully understand.  I love people from different races, nationalities, and economic backgrounds.  These people are my neighbors.  They teach my children.  They fix my car.  They are some of my dearest friends.  They are me.

What concerns me the most about what is happening in our country right now is this:  we seem to be trading in a love of humanity and our unity as a country for a world that is filled with hate and divide and oppression.  I’m very clear that not everybody likes people as much as I do.  Not everyone chooses Smurfette or Rainbow Bright for their Halloween costume; some of us prefer the Grim Reaper.  That’s cool.  But what if, moment by moment, we all chose to love our neighbors?  What if we chose to love those “friends” online who are sharing views that make us cringe?  What if we chose, even just for a moment, to love that person that we could very easily hate right now?  I’ve heard it said that, energetically and vibrationally, love is more powerful than hate.  It will win EVERY SINGLE TIME in a showdown.  We live in a culture that is serving up hate, division and negative energy on a platter.  What will WE, THE PEOPLE choose to foster in our country?  What will we consciously add energy to, day in and day out?  Will we feed the healthy cells?  Or will we feed the cancerous ones?  Moment by moment, day by day, we have a choice.  That is our right as Americans.


This post is dedicated to my mom and dad. I’m so grateful for you both. ❤️


Me on my wedding day with the two loving human beings who raised me.

Posted in America, Energy, Friendships, gratitude, Healing, Politics, Sufficiency | Tagged , , , , , , , , , , , | 1 Comment

Mo’ Mondays, Mo’ Problems

Today I celebrate my 41st birthday.  It doesn’t carry all the punch that the BIG 4-0 does, but I’m not sure I could handle all that extra excitement right now anyway.  I’m content to quietly ring in another year with some morning cuddles and breakfast in bed.

In the reflections that come with birthdays, I was thinking back to 2002, the summer I was 25.  That summer I did a program called the Landmark Forum.  The mission of their work is to empower humans to “live a life you love and live it powerfully.”  Their courses helped me to transform my life.  The months leading up to my participation in the Landmark Forum were extremely challenging.  I felt trapped in a business that I didn’t enjoy, and wasn’t doing well at.  To put it frankly, I was miserable and life kind of sucked.  I was negative $12,000 for the year in income.  I worked from home and felt lonely and isolated.  I was failing but I felt like giving up would be a bigger failure, so I just kept plodding along.  Although Jerry had proposed marriage to me in April of that year, we became distant as these challenges continued and our relationship was deteriorating.  Thankfully I had some wonderful friends in Boston, Miriam Hawley and Noah and Jeffrey McIntyre, who had the cure for what ailed me.  That weekend and the tools I gained had a lasting impact on my life.  I still use those tools daily.

One of the conversations we had over the course of the weekend was around our problems.  The message I took away from this conversation was to “get a bigger problem.”  The idea was that if you aren’t currently satisfied in your life, if you spend time obsessing over your life’s problems, go take on some bigger problems.  If you make it your mission to solve world hunger, that dining room table that you just can’t seem to keep clean just doesn’t seem all that important anymore.

What my Landmark Forum weekend gave me was a profound shift in perspective.  Before that weekend, I remember spending chunks of time deleting all the “missed calls” on the caller ID of our bedroom phone (remember landlines?).  The phone held up to 99 missed calls, and in this time of deep frustration in my life I would occasionally turn my wrath on the delete button on that phone and purge away.  My success was always short-lived however, since the damn phone would just start gathering missed calls again, and soon enough it would be back up to the cursed 99.  After my Landmark weekend, I stopped paying so much attention to that phone.  I chose some bigger problems.  I revamped my business, stopped bleeding out money, started facing our finances.  I got a cat.  Jerry and I dealt with the challenges facing our relationship.  The next year I got a second cat to keep Mr. Sass company.  Although Mr. Sass ran away right around his 1st birthday (I like to think he went to Vegas), we still have Lady 14 years later; she much prefers a life where she isn’t dominated by a wild alpha male.  Within two years we had paid off $17,000 in credit card debt and bought a condo.  The next year we were married, and so the story continues.  Bigger problems.

As I sit here on my 41st birthday, I feel a deep sense of peace—it’s the peace that comes with facing down some of life’s bigger problems.  The stonework in front of my house needs attention.  The weeds in my yard are out of control (sorry neighbors!).  I still can’t get a handle on that dining room table clutter.  You don’t even want to know how many unread messages I consistently have in my 6 or so Gmail accounts.  But I am alive.  My children are well.  Jerry is still by my side, 19 ½ years after our first date.  Lady’s still with us.  My parents and brothers are doing well.  I have an incredibly supportive extended family (including Jerry’s), both Stateside and in England.  Although this past year has brought me to some of my darkest moments, it has also given me incredible clarity.  I have so many people from different stages of my life cheering me on and sending love and healing energy my family’s way.  There are people I’ve never met who have been praying for me this year, who have been willing to guide me and support me through some of the most difficult choices and months of my life.  Thank you for the many gifts you all have given me.  I am incredibly grateful and humbled by the company I keep.


For more information about the Landmark Forum visit their website


Easy like Sunday morning


You too, buddy.


We’re really into our cat around here. 

Posted in Experiences, Friendships, gratitude, Reflections, Time | Tagged , , , , , , , , , | Leave a comment

The Morning After: Cancer Edition

Yesterday was a DFCI kind of day. My lovely father-in-law Jerry (“El Grande” I like to call him) escorted me to chemo in his fancy new Malibu. We enjoyed some Neil Diamond tunes on the way. I peed in a cup; we picked up a snack in the 5⭐️ cafeteria; we took in a show. “Lion” proved to be a good choice. It had subtitles for much of the first 1/2 hour, when the infusion area I was being treated in had the highest noise level. Most of the other patrons had left by the time we were halfway through treatment and our flick. As far as I could tell we were on a very bizarre lunch and movie date.

I have nothing much to report, health-wise. Still can’t feel tumors, labs and counts still look good. My hairdresser Jessica assures me my hair is not thinning (as she used scissors to thin out the top of my pixie cut at my appointment last week).

Today is an interesting day. A morning after of sorts. The day that logically I would probably feel the worst, as the powerful chemotherapy drugs course through my veins, hunting down and eradicating HER2+ breast cancer cells. I don’t make big plans for the day after chemo. I plan to take tomorrow “off” too.  It is my birthday weekend after all.  My compost can wait.

I have come to realize that the morning after is for processing the chemo. It’s for processing the cancer, and what led to this point. It’s for shaking and crying and resting and releasing and escaping, or whatever may be your healing agent of choice for the day. For me, today has also been for learning. It’s been for opening my mind a bit more to what bought me a ticket on a speed train to Cancerland. It’s been for dipping into the sadness that has encompassed our household to various degrees over the last year and a half as we began our descent into Dylan’s PANDAS illness. Today has been for letting go.


NOTE:  For PANDAS education today I read the story Saving Sammy:  A Mother’s Fight to Cure Her Son’s OCD by Beth Alison Maloney.  It’s a riveting read.  I’m so grateful to her for “going first” and for sharing Sammy’s story.

For Cancer understanding today I watched Module 1 of Chris Wark’s “SQUARE ONE:  Healing Cancer Coaching Program” at

My children arrived home from school a short while ago and after greeting them I suggested they do their homework on the earlier side so they aren’t so tired.  Dylan cheered and asked if we could do vocabulary flashcards over dinner.  Um, yes we can!






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Dylan’s Story

Eleven years ago this week, Dylan was born.  The birth of our first child rocked our world in all the ways you would expect.  One week my primary focus was to close loans in the San Diego mortgage company where I worked; the next week my main job was to keep a tiny human alive.  No pressure.  It was quite an adjustment, and we had our ups and downs, but 10 years, 3 states, and another child later, we were thriving.  I had found my groove as a mom, we had found our rhythm as a family, and we had found a great community in which to raise our children.

If you’ve been following my blog for a while you may have noticed a large gap in blog posts between December 2016 when I wrote about “Going Dark” and July 2017 when I shared my breast cancer diagnosis.  In a novel, we would call that “Going Dark” post a bit of foreshadowing.  I didn’t know exactly what challenges lay ahead, but I knew that we were dealing with some stuff.  I had felt energetically “off” since September 2016.  Our whole family had been a bit energetically “off” since January 2016.  We endured a broken arm, a semi-paralyzed guinea pig on our anniversary, a lost passport while about to board a cruise, weird infections.  Some people read my blog posts last year and asked if we were okay.  They all seemed a bit dark and foreboding.  We were struggling, but I couldn’t really nail down why.  And this wasn’t a novel, this was real life.

I find it fairly easy to be open about my own struggles, emotions, and challenges.  But this story I’m about to tell is NOT my story.  It’s Dylan’s story.  And I don’t take the sharing of it lightly.  As you’ll see, Dylan’s story and my story are very closely connected.  As any caregiver understands, Dylan’s struggles became my struggles; his pain became my pain.  I firmly believe that my story of healing wouldn’t exist were it not for Dylan’s story of healing.  And part of why Dylan is on a path to healing is because a mom I don’t know was brave enough to share her child’s story on a TODAY parenting blog, and it found its way to Facebook.  A friend tagged me in the post (shout out to Kathy Bernardo), and I suddenly had answers for what was wreaking havoc on my child.  My hope is that me telling this story makes a difference for another family out there who is struggling and doesn’t quite know why.  Maybe this will give them answers.

Many friends have asked me how we discovered the cancerous tumor in my breast, and I will share more details on that in the weeks to come.  Today’s post is dedicated to my caring and thoughtful son Dylan, who turned 11 on September 5th.


It seemed like a normal night by all accounts.  We enjoyed a relaxed day on the Friday after Thanksgiving, went out for an early dinner and finished the day with a movie at the East Providence 10 Cinemas:  Pete’s Dragon.  After dropping my mom off at her apartment, I headed home with my boys.  We walked in the door and Dylan paused in the downstairs hallway, stripped down to his underwear, and asked me to wash all of the clothing he had been wearing, including his outerwear (jacket, hat, gloves).  He sprinted upstairs to jump in the shower.

If you’ve lived close to Providence, Rhode Island, you’ll know the East Providence Cinemas as the $1 movie theatre.  As you can imagine, they’re not the cleanest theatre around.  During the first movie I watched there as an adult, the final installment of the Harry Potter series, a large stain distracted me from the tale of the Deathly Hallows.  It appeared that someone had thrown a Big Gulp at the screen and it had never been washed.  You get what you pay for I suppose.

The price has gone up over the years—it now costs $3 to see a movie.  I haven’t noticed any stained screens lately, but the overall cleanliness is still a bit questionable.  So when Dylan asked me to wash his jacket and gloves that had fallen on the floor of the theatre, I went ahead and washed all our jackets.  Winter was coming and it didn’t hurt to prepare.

I didn’t realize it at the time but that request has since become a pivotal moment in our journey this past year.  An inquisitive and thoughtful child with a brain for science, it didn’t seem strange to me that Dylan had been instructing children for years to wash their hands before they touched his LEGOs.  Let’s face it, kids are gross (trademark Sara Norman, 2012 😉); they’re little petri dishes.  I ask them to wash their hands before they touch my stuff too.

We were, however, entering a new dimension over Thanksgiving weekend 2016.  From that point forward Dylan showered EVERY.SINGLE.NIGHT before getting into his bed.  If I denied him a shower for any reason, it created serious distress for him.  As a mom to two boys, I’ve heard tales of young men with no interest in personal hygiene.  I’m not about to complain that my 10 year old likes things clean.  But when he came home after visiting friends or family (some of whose homes were cleaner than mine at that moment) and repeated the scene from Thanksgiving weekend—stripping down in the hallway and running upstairs to shower after insisting I wash his clothes, jacket, and gloves—I knew this was not a “typical” concern for cleanliness.  As parents we were heading into new territory, and I was scared.

I had been feeling very unsettled myself that fall and had just gotten a recommendation for a therapist from a friend.  I called her the Monday after Thanksgiving.  Prior to our first meeting, I filled out paperwork and ranked my stress level in various areas of my life.  Based on my answers, at our first appointment my new doctor suggested that I have my son evaluated by a specialist.  Within a week I had contacted a child psychological office and requested an appointment.

We were entering the holiday season, and moving through this sort of process takes time, so it wasn’t until February 6th that I had my consultation with the neuropsychiatrist regarding Dylan.  Based on the in-depth, 12 page evaluation packet I had filled out, the specialist diagnosed Dylan with generalized anxiety and some OCD tendencies.  We discussed doing some testing, but the specialist recommended we start Dylan on Cognitive Behavioral Therapy (CBT) first, and we could discuss further evaluations with whichever doctor we connected with.  I was eager to get started with treatment.  Dylan’s emotions were all over the map, and school was becoming a challenge, both academically and socially.  Although Dylan had been on an IEP (Individualized Education Program) for both reading and writing in his early elementary years, he had made tremendous progress with the support of Jerry and myself, his teachers and his specialists.  He was now reading above his 4th grade level and had completed his IEP for writing in the spring of 2016, at the end of 3rd grade.  His teacher at that time had found it difficult to believe that writing was ever a struggle for him.  He had his best report card ever in the fall of 2016 and I felt like Dylan was really coming into his own academically.

That all changed in the early months of 2017.  Dylan was having a hard time keeping up with all the classwork.  His handwriting was deteriorating.  His emotional responses to situations seemed extreme and inappropriate.  Was this the onset of puberty?  I thought maybe it was the increasing academic demands as the school year progressed—he’s always had a wonky grip and the physical act of writing doesn’t come easy for him.  Although Dylan had “graduated” from seeing the school Occupational Therapist in June 2016, I reached out to her in December 2016 to ask for child psychiatrist recommendations.  She heard my concerns and spoke to Dylan’s teacher while we waited for the administrative wheels to turn.  By March 2017 Dylan was back in weekly OT again, to practice keyboarding since handwriting was so difficult for him.  On April 3, 2017 I sat in an IEP meeting with his “team” and his teacher asked me to be his “scribe” at home so that we could save him the frustration of writing but still get his thoughts on paper.  Nightly homework had become a nightmare.  I found myself sitting beside my 4th grader night after night, reminding him to focus, calming him down, writing for him as needed.  WTF was happening?  How did we get here?  I tried different strategies for our homework sessions—If I encouraged Dylan to do his homework right away, he inevitably had an emotional breakdown because the school day had been stressful for him and he needed a break.  On the days when I allowed him to wait until after dinner, homework took FOREVER and he couldn’t focus.  I tried having him do one subject right after he got home and another later in the evening.  I was constantly looking at ways to make this time of day easier.  On days when we had Cub Scouts or karate, he became terribly upset that he would have no time to himself.  In late March we added in weekly CBT appointments, and I desperately hoped that we would start seeing improvements. It felt like my bright and capable child was spiraling into mental illness and I couldn’t pull him back no matter how hard I tried.  I knew that what we were seeing was anxiety and OCD but I kept telling Jerry that I felt like we were missing something.  I felt like there was something at the source of all of this and we hadn’t yet identified it.

I did my best to stay healthy during this time.  I had joined a gym in December and I worked out 3-4 times a week.  I saw my own therapist regularly.  I took more baths and drank less wine.  I mentally escaped into the Outlander series of novels.  At one point this past spring I remember feeling my heart ache for what my child was going through.  I later realized that was the feeling of a tumor growing.

On April 21, 2017 a friend tagged me in an article on Facebook:  “Mom thought child had mood swings, not a neurological disorder.”  I had pulled back from Facebook during the fall, my sensitive soul just couldn’t deal with the negative energy tossed around during the election cycle.  I continued to steer clear of social media in the winter and spring; it was painful to log in and see the smiling faces and picture perfect lives while my child was suffering with an uncertain future.  For the first time I couldn’t offer a cure for what ailed him.  I couldn’t even define what the ailment was.  I remember feeling a bit of denial too when I saw the title:  how could my beautiful boy have a neurological disorder?  That can’t be our reality.  It felt like reading it may make it true.

Despite our regular visits to therapy, the truth is that Dylan’s symptoms were getting worse.  Over weekends and school vacations I was hesitant to make plans, even with close friends, because I didn’t know how Dylan’s mood and behaviors would be, and I just didn’t have the energy to constantly buffer him from the world.  Looking ahead to the summer, I wasn’t sure if I’d be able to go to Newport Folk Festival weekend, or attend other social events with friends, because I didn’t know if I could leave Dylan with anyone else.  This is a child who took his first cross-country flight at age 4 ½ months; who has lived in 4 homes, in 3 different states; who has traveled more than many adults I know; who can tell you what’s on the other side of a black hole without batting an eyelash; who, at age 1 year 9 months, Jerry and I left with a mix of family members for 11 days as we enjoyed a cruise that Jerry won through work, followed by a wedding in St. Thomas; and now, at age 10 ½, I don’t know if I can leave him with his grandparents for a weekend away?

I got a call from the school nurse and his teacher in the late morning of April 27th that we needed to pick him up.  They told me he just seemed really “off” and was anxious and on the verge of tears all morning.  He had complained of a sore throat before school, but had no symptoms that would keep him home (no fever, vomiting, etc.).  He was worried about a PowerPoint presentation they were working on in class and he thought it was due the next day.  I gave him some ibuprofen and sent him to school, although my mom instinct warned me against it.  That instinct was validated with those phone calls.

By this time Dylan was starting to have “episodes”—they seemed to be like what I would picture a panic attack.  He would just get into a space of frustration or upset and he couldn’t get out of it.  Over the weekend of May 5-7th we had our two most challenging days yet.  The “fits” Dylan was having got so intense that he was hitting himself in the face by the end of it.  At a loss for how to help him, I just held him and hugged him and cried with him.  And on Sunday May 7th I read that article on Facebook.  (Link included at bottom of post)

The article talked about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and the five criteria that help doctors diagnose it:  “significant obsessive/compulsive behavior or tics, abrupt onset of symptoms, a patient of prepubescent age, a history of strep infection, and a mix of other neurological symptoms such as loss of appetite, bed-wetting, decreased school performance and behavioral regression.”  I remembered that the intake form for the child psychologist had asked about recent strep infections.  The last one that Dylan had was in January 2016—definitely not recent, but it was strange.  His brother Cooper started complaining of a stomachache first, and then Dylan started.  He had no fever, no signs of a cold or flu, nothing to keep him home from school based on the illness criteria.  He missed three days though because of severe stomach pains that kept him up all night.  Cooper’s pains passed after five days and I assumed Dylan’s would run the same course.  He was on day 7 with no sign of improvement when I finally took him to the urgent care on a Sunday morning.  They diagnosed him with strep throat and an ear infection, although his throat didn’t hurt, his ear didn’t hurt, and he had no fever.  I had never seen a strep diagnosis like that.  I felt like a jerk.  We started him on antibiotics and things cleared up.

But still, that was too far away from the initial onset of OCD symptoms.  So I started pulling up more online information about PANDAS.  It was like reading a health history for my family.  Dylan had gotten a routine vaccination in September 2016 at his annual physical, and he developed cellulitis.  Our family doctor assured me he had never seen that in all of his years of practice.  We found ourselves back at the urgent care, this time over Labor Day weekend, the weekend of Dylan’s 10th birthday.  They prescribed a 10 day course of both steroids and antibiotics and gave him an antibiotic shot in his bum.  He started 4th grade three days later.

After reading that cellulitis could be caused by strep, and that a family history of rheumatic fever was a risk factor, I made an appointment with our family doctor.  My family history also includes mental illness.  Some folks need regular checkups for their cholesterol or blood pressure; we Cleary’s sometimes need support for our mental and emotional health.  I’m okay with that, and initially I thought that was what we were dealing with.  When I first reached out to the school Occupational Therapist for a psychiatric recommendation on 12/13/16, I told her that I wanted to be proactive about the support I offered to Dylan as he entered puberty.  It never occurred to me that what we were dealing with was an autoimmune illness and that the source and treatment could be found in his physical body.

On May 12th I spent 30 minutes explaining to our family doctor the progression of Dylan’s illness over the last 6 months.  He assured me that this was NOT the “normal” onset of mental illness in a child, and that this wasn’t Dylan—something was attacking his brain, and if it wasn’t PANDAS we would do more tests to identify the culprit.  Based on my instincts, he prescribed Dylan a 30 day course of antibiotics and ordered some bloodwork.  Jerry and I left for a friend’s wedding in Mexico the following week, and received a voicemail from our doctor on our first full day there. Dylan’s strep antibodies were high and out of range.  We were on the right track.

We returned from Mexico on May 23rd to a positive report from my mom, who had been with the boys while we were away.  We arrived home just before bedtime, and Dylan asked me “I don’t need to take a shower tonight, do I?”  I think I cried.  My boy had been obsessively showering every single night he slept in his bed since November 25th.  He didn’t need to shower if he slept at someone else’s house—it was his bed that he was compulsively keeping “clean.”  I gratefully assured him that it was fine to skip a shower that night.  For the first time in months I felt like we were moving in the right direction.  The mystery illness that had defined our lives for the past six months was loosening its grip on my child.

Three days later I had my regular screening mammogram, where I mentioned the lump I had felt in early March.  Thus would begin my own spiral down a rabbit hole of doctor visits and scary diagnoses.  But for those three days I was okay, because my son was going to be okay.  And I knew that I could handle whatever was about to come my way.


Here’s the link to the article I read on May 7th, that led to Dylan’s diagnosis:

For more information about PANDAS and its risk factors and how it affects children, check out the PANDAS Network link below.  According to them:

“PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.

PANDAS Network estimates that PANDAS/PANS affects as many as 1 in 200 children.”

handwriting regression

Handwriting regression is a symptom of PANDAS.  When Dylan’s papers came back at the end of school I clearly saw the deterioration we had been dealing with.  The paper on the left is a rough draft he did on 10/17/16.  The paper on the right is a rough draft completed in June 2017.


Me with my sweet boy at 2 months old.



Dylan on his 7th birthday, first day of 1st grade for him, 1st day of preschool for Cooper.


Dylan in 2015 at age 8, proudly displaying his Cub Scout Pinewood Derby 1st place trophy.



In early June 2017 we went on a cruise with Jerry’s whole family (thanks again Lorry & Phil). This picture was taken 3 weeks after Dylan started antibiotic treatment for PANDAS and 6 days before I received my breast cancer diagnosis.


Posted in Autoimmune illness, Healing, Health, Intuition, Motherhood, Neuropsychological Disorders, Overcoming Challenges, PANDAS, Parenting, Strep Virus, Wellness | Tagged , , , , , , , , , , , , , | 3 Comments


I sit in the subterranean waiting room at Brigham and Women's Hospital, a lady on a loveseat, a patient and her bags.  I packed for a full day in Boston, my bright floral "cancer bag" filled with books, medical records, my water bottle, a portable charger.  I purchased that bag exclusively for this journey and figure I'll either want to burn it or frame it when I'm done with all my hospital appointments.  I've acquired more bags throughout my day, including a snazzy silver tote that Dana Farber gives new patients, filled with useful information for the journey ahead.  I've settled in to wait for my final appointment, rotating between reading bits from one of my many "Cancer book fair" selections, writing in my journal, checking my email, playing a stupid game on my phone.  This final appointment is for a CT scan or a CAT scan, I'm not really sure what the difference is and I think maybe the terms are used interchangeably, but since I'm a cat person I've chosen the latter.  I also think "CAT scan" sounds much more groovy than "CT scan," and if I have to spend my days getting poked and prodded and scanned at a premiere cancer hospital, I may as well pretend there's a disco ball rotating silently overhead.

I've checked in early for this appointment, hoping that they're ahead of schedule and I'll be able to get out of here before the 5 o'clock Boston traffic is upon us.  Although this is my first time at the rodeo, I'm watching and listening to the interactions in the waiting room so I have an idea of what's in store.  I gather that about an hour before my appointment time, a nurse will come along and hand me two Dasani water bottles spiked with "contrast;" this will make my insides light up in such a way that will highlight any cancerous lesions lurking in my internal organs.  Sweet.

I'm texting with friends when a family with a baby sits down to my left.  At first the baby is a solid four chair distance away, but as they hand her along the row I suddenly find myself sitting next to her and I jump into action.  "Excuse me," I say as I gather all of my bags together, scrambling to shove my various distractions away so I can cart them across the room.  "I'm a bit radioactive today and I think it's best if I move over there."  They look at me with concern and confusion in their eyes; it takes just a few minutes before most of the family has left, and only a fellow patient remains.

Five hours earlier I sat in a chair in the Nuclear Medicine Department and received an intravenous injection of radioactive fluid that allows specialists to see if cancer has spread to my bones.  Radioactivity is contraindicated for young children, pregnant women, and government buildings, or so I've been advised.  To ensure that I wouldn't be detained for carrying radioactive material (how is this my reality?!), the bone scan technician gave me a "get out of jail free" card (her words) to carry around for the next 3 days.  I have a radioactive half-life of 6.02 hours.  You'd best respect.

I dutifully drink my spiked water when it's handed to me, watching the clock tick by the 60 minutes required before I'll be bright enough to scan.  When I enter the CAT scan procedure room, the technician with the "maybe I've seen you at a music festival" vibe gives me another IV injection as he describes to me the next installment in my journey through the looking glass.  He explains that when it gets into my veins, this fluid he's injecting will make me feel like I'm peeing my pants.  He assures me that I won't be.  Fantastic.  A voice from the machine starts bossing me around; just like in kindergarten I listen and follow directions well, while I suspiciously eye the signs warning me against looking directly into the lasers.  I tell my fellow hippie that the CAT scan machine looks and feels like an amusement park ride gone wrong.  I'm waiting for a creepy clown to pop out to complete the scene.

Just another weird little Wednesday over here in Cancerland.


NOTE: this was not today, 7/26/17. This was a few weeks ago. All my scans came back clear from this adventure.

Special shoutout to two friends from high school, Julie Chisholm and Laurie Westgate Rotondo, who hung out with me at different times during this most bizarre of days.  They were my witness to the weird, and the fact that we hung out at Dana Farber after not seeing each other for 2 years (Julie) or more (Laurie) just added to the feeling of an alternate reality


Cancer Bag. It hangs out with the other bags but we all know it's different.

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This Moment

My high school yearbook photo and quote.  From back when Hammer pants were a thing. #2legit2quit


I’ve been feeling anxious tonight. I think It’s because I’m trying to fit this cancer into my life rather than working my life around this cancer. This isn’t an inconveniently timed head cold that I just need to power through. This is a major life experience, one that I’ve so far felt best about when I’m “being” with it fully, present, alive, each moment in time. There are many lessons available to me and when I show up to retrieve them I feel a deep sense of peace and beauty about this whole experience and it’s place in my life.

Today I felt resistant.  I felt tired of being conscious and present and go-with-the-flowy.  I want to be where I want to be and I want to do what I want to do, cancer be damned.

I brought the kids to the Cub Scout camp bus for 7:30am, which is a full hour earlier than they catch the school bus.  Dropoff is in the Shaw’s parking lot so I popped in after the bus came and grabbed a few essentials.  Walking down the bakery aisle, I found myself drawn to the Hostess Snoballs, like so many times before.  Despite being a 25 year vegetarian (they contain lard), I crave this crazy combination of cake, cream, and bionic coconut marshmallow “matter” a few times a year.  My favorite is when they’re green for St. Patrick’s Day (I’m 50% Irish and March 17 is my half birthday, it all just makes so much sense to me).  The luck o’ the Irish was with me this morning, as the ides of July Snoballs were ACTUALLY GREEN.  Hell, if 2+ straight years of greens (juiced and sautéed and blended, oh my!) for brekkie didn’t prevent cancer, I don’t expect today of the green Snoballs will make too much difference either. 🍀

Our New England summer is in full swing, and in years past that means we operate in “OMG we need to do ALL the fun things in just 2 1/2 months” mode, where almost every weekend is booked before Memorial Day arrives.  It’s exhausting. Today I’ve been thinking about the weeks ahead and contemplating plans that don’t support me while I heal from cancer.  And my shoulders become tense and my breath becomes short and I just can’t see how to make this all work and still honor what my body so clearly needs right now.

So I don’t. I take it back to one day at a time, one moment at a time. “This moment is all that we have, for in this moment is all of life.”

Posted in cancer, Energy, Healing, Health, magic, Motherhood, Opening, Summer, Time | Tagged , , , , | 10 Comments