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.

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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 http://www.chrisbeatcancer.com

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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Yesterday.

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Today.

 

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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.

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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.<<<<<<
ll, 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.

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Here’s the link to the article I read on May 7th, that led to Dylan’s diagnosis:  https://www.today.com/parents/mom-suspects-daughter-has-pandas-after-behavioral-changes-t110552

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.”

http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/

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.

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Me with my sweet boy at 2 months old.

 

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

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

 

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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

Radioactive

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.

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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

Nuclear.

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

7.17.17

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

Trust.

“Courage is not the absence of fear, but rather the judgment that something else is more important than fear.”  ~Ambrose Redmoon

Four weeks ago today I sat in a surgeon’s office in Attleboro and received a diagnosis of breast cancer.  Tomorrow I start chemotherapy at Dana Farber Cancer Institute in Boston.  The space between June 13 and July 12 has felt like the longest month of my life.  I made it through with the support of my husband Jerry (bulldog with a pink folder!), loving family members and many dear friends.  As I prepare for the next stage of this healing journey, I wanted to share with you all where I am today.

Hearing that someone we know has cancer (especially someone fairly young and healthy) can be very scary.  The odds that I would be facing down breast cancer at age 40 is 1% (or less, considering the lifestyle I lead).  I can feel people’s fear for me.  I can hear it in their voices on the phone, see it in their faces when we speak in person, and read it in their text messages.  I too started this journey filled with fear.  I felt blindsided a bit by the Universe.  I’ve spent most of my adult life engaging in healthy practices that are supposed to prevent cancer.  How can I be standing here with breast cancer?  How did my body not fight this successfully?  As I’ve moved through the last few weeks of my life, I’ve found my footing again.  I’ve found my deep trust for the wisdom of my body again.  I’ve rediscovered my connection with the Universe.  The body will do whatever it needs to keep us safe and to protect us.  That must mean that my body needed to create this tumor to protect me from something I wasn’t able to see.

I’ve had cancer described to me a few different ways by a few different people.  (Beware all you scientist types…this is how I perceived what I was told by some of these folks, and I may be getting it all wrong).  Jerry, lover of Nova and Through the Wormhole, told me “it’s a byproduct of evolution.  Genes have mutations that have many causes, but most are random.  The mutations that aid in your survival live on in your offspring and those that hinder your survival tend not to.”  An oncologist friend of a friend told me it’s just cells doing something they’re not supposed to do.  My lovely lady scientist friend says that cancer grows due to an error in the immune system–for some reason it doesn’t take care of the rogue cells when it sees them (her company is working on a vaccine for cancer).  An acupuncturist told me it’s a healing mechanism of the body.  The body takes things that aren’t working for us, whether it’s a behavior pattern, a thought pattern, or something else, and puts it into a form (like a tumor) that can be treated and removed.  A master herbalist and detoxification specialist told me it’s what the body does to protect itself.  If there’s too much acid in your body it will create a cancerous tumor to encapsulate that acid.

We live in a culture of fear around cancer.  We live in a culture where we don’t trust our bodies to heal themselves.  I’ve spent years cultivating that trust in my body.  I’ve spent years giving my body what I thought it needed to be healthy and to heal.  If my body allowed a cancerous tumor to grow, then I trust that it knew exactly what it was doing, and that tumor is the access to a higher version of health for myself moving forward.

In the past few weeks I have spent time experiencing depths of fear like I’ve never felt before.  Some steps on this path to healing will bring me to dark places.  My job will be to release whatever negative emotions may hang out there so I can move back into the light again.  It’s tempting to create from the dark spaces.  That’s where all the “what if’s?” live. I’ve dabbled a bit in the “what if’s”–it led me nowhere good.  With Jerry’s help (your head is a bad neighborhood, don’t go there alone!) I recognized that the place to create is not from the dark, it’s from the light.  Go to the dark, release, but come back to the light before you get those creative juices flowing.  That’s the plan.

Although my Dana Farber treatments don’t start until tomorrow, the healing process has already begun.  Acupuncture, reiki (energy healing), food, supplements, medical cannabis, massage, talk therapy, yoga, journaling, laughter, ocean water, sunlight…it’s all part of this journey for me.  I said to a friend last week, this feels like my own personal Olympics.  I’ve been training for years for this, not just with food and what I put in my body, but also with the products I use in my home, the chemicals I don’t put on my skin, the monthly massages I receive, the yoga I always return to, the small daily actions I take to choose a healthier and less toxic path, the lenses I view life through.  In the quiet moments, I keep hearing the message that this is a story of healing.  That is what I’m choosing for myself.  That’s where I stand, on the eve of chemotherapy.  If you feel fear in your heart for me, I ask you to release it.  Send me love, light, healing vibes, bad jokes, positive energy, good juju, prayers to God, Jesus, Allah, the Buddha…but trust that you don’t need to fear for me.

I haven’t written much here in the last year, but the funny thing about a cancer diagnosis…it got me writing again, and it will be part of my healing journey.  I’ve been writing a lot and will be posting more.  Some of what I post may be from the early days of my diagnosis, when the fear was overwhelming.  That’s part of my journey too.  Don’t be alarmed, trust that today I am okay.

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Me and my boys…ready to ride the roller coaster of life. The one rule? Don’t get off.

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Bring on the wild beasts, harsh conditions, and harmony.

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Team #baldlife

Posted in Energy, Healing, Health, Life Passages, Overcoming Challenges, Personal Growth, Release, Wellness | Tagged , , , , , , , , , , | 18 Comments

Going Dark

I’m pretty sure that 10 years ago people didn’t have to “go dark” when they had a down spell. I think we just kept to ourselves a bit. We didn’t accept invitations, certainly didn’t invite anyone over. And then, enter social media.

We live in the age of letting everyone know what you’re doing at all times, so “going dark” ain’t what it used to be. So many of us use social media for business as well as socializing, and that makes it extra tricky. Have you ever had a tough month? A bad quarter? How about a rough year? I’ve had all of those in my lifetime. I think I’ve even had a succession of years that kind of sucked, let’s say 3 or 4 in a row (it’s much easier to look at those with a 15-years-out perspective. While in the midst of it I’m sure I don’t know what the hell was up). I happen to be going through a rough patch right now (length to be determined) and it feels different than when I went through something similar 5 years ago, because now…well, now social media is EVERYWHERE. And what are the rules about all that?

I’ll be honest, I don’t know. I’ve avoided social media as much as possible lately, and have hoped that astute friends would see I’m not posting much and not judge me for it. I’m on social media here and there, bingeing at times (hello, 48 hours post-election). I take care of what I need to. On some days I feel better and you may see some likes from me as I peruse other people’s posts. On other days I lay around in my pajamas and curse the life choices I’ve made. Such is life, eh?

At my family Christmas last week, I spoke to a cousin who said she felt such relief when she recently deactivated her Facebook page. She had 15 friends. I get it. I have over 950. Damn.

We’ve been listening to a lot of Diamond Rugs in our house lately. That may seem like a non sequitur, but their music has felt very relevant lately. At least my kids jam out to their music so we have some positive movement going on.

I spent some time with a dear friend last night, celebrating her birthday. We are on different ends of the parenting spectrum, but both challenged by what’s in front of us. She’s a 5th grade teacher and in our conversation she offered the book “Things Fall Apart” as a source of support, explaining that human suffering is universal, wherever you stand.

This too shall pass. This I know from experience, although as each month drags out it seems interminable. My Christmas wish for myself and all of you: strength, peace, and clarity. Namaste.

(And for non-Yogis who may not understand the full meaning of Namaste–it can be translated as:  “The divine light in me acknowledges the divine light in you.”) 🙏🏻

ADDENDUM:  I feel compelled to add an explanatory note to this post.  There are many aspects to human health.  For some reason, discussing mental health is often taboo while discussing physical health is not.  The fact is:  we all go through ups and downs in our mental wellness, just as we do in our physical wellness.  This post was an acknowledgement of that.  We can’t choose the genes we inherit from our parents.  Knowing we have a family history of heart disease or diabetes can certainly help shape the lifestyle choices we make or the treatments we seek.  The same goes for knowing we have a family history of depression, addiction, or OCD.  I speak openly about the ups & downs of mental wellness in an effort to help normalize it.  I want my two boys to know that going in for a mental health checkup is just as important and available as going in for a physical health checkup.  I don’t want them to feel ashamed about their genetics; I want them to feel empowered about all aspects of their health.  For those of you who reached out to me to check on me or send words of encouragement, I appreciate you.  I’m okay today partly because I was raised in a family that taught me from a young age how to reach out for support when I don’t feel okay.  And for those of you who reached out to me to share that you too have been struggling–thank you for sharing.  You are not alone.

Christmas Pikachu!


Fluffy and Katie LOVE their costumes, can you tell?


Heater hugger extraordinaire


Two Tigers 🐯🐯!!

Posted in Daily Life, Health, Life Passages, Motherhood, Overcoming Challenges, Retreat, Wellness | Tagged , , , , | Leave a comment

#thestruggleisreal

For me, summertime didn’t REALLY exist (in it’s current incarnation) until I had children. Sure, I was once a kid.  And then I grew up and lived in San Diego (where “summer” is a term we use loosely–it’s kind of always summer there).  And THEN…I had a child.  And left San Diego to move back to New England.  And I finally really understood summer.

Summer, although it technically exists in time and space (aka June 20th or so until September 20th or so), it’s really more of a feeling.  It means you don’t have to get up until you want to in the morning.  It means you can make pancakes (or avocado toast, my current fave) for breakfast every  morning if you want to.  It means you can stay up late, eat ice cream every day, and watch stupid TV in the late afternoon instead of doing homework.  Summer = Rest and Play and Fun and BE.

For us, this summer has been a bit odd.  Jerry and I traveled A TON (mostly without the kids and a little bit with the kids).  As I may have mentioned already, I’ve been partying like it’s 2005 (aka before I birthed my first child).  I’ve been to Colorado, Alaska, Vancouver, Seattle, on a Phish run (which is really it’s own stratosphere), and to Newport.  I’m headed for camping, Great Wolf Lodge, Canobie Lake, and laser tag (August is all about the kids).  When I’ve been home I’ve been preparing for the next departure or working my butt off to handle my life in the short time I had available.

And then there was today.  Each boy had a friend over and we went to the pool.  I made all the kids lunch, we all stayed hydrated and protected against the sun, and we even caught some Pokemon on the way to and from, and yet…I spent a good part of the day beating myself up.  In my mind, there were two ways I could spend my time while at the pool–watching webinars on how to improve my website (which is actually something I really need to do) or watching Wentworth (a really good show on Netflix based on an Australian women’s prison–kind of like the Australian Orange is the New Black–thanks for the recommendation Kathy!).  And you know what?  I chose Wentworth.  And then I came home, washed all the towels, sent a child off with his grandmother, and climbed into my bed to drink wine and watch more Wentworth.  Yet I felt guilty that I was doing it.

If I’m truthful with myself, I think this is a struggle that comes up every summer.  And because this summer has been SO FREAKING AWESOME (and full of enriching activities), I’ve avoided it until now.  But here I am, about 1/3 of the way through August, and the “not doing enough” feeling starts to rear it’s ugly head.  I see you, scarcity conversation–and I recognize you for what you are.  Whatever this nonsense is, I promise you it doesn’t exist at the same level in children.  I watched my kids tonight eating nachos and watching stupid TV (in my opinion at least) and they didn’t bat an eyelash at any of it.  So why do we?  Next time I start to get all hung up on wasting a little time here or there (aka the point of summer), I’m going to ask myself WWDCD?  (What would Dylan & Cooper do?)  I have a feeling I would have their approval all day long.

With our dear friend Anne, my mom’s best friend since I was a wee lass.

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My boys were on their best behavior on the Amazing Grace, the Newport Harbor tour.

 

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Daddy is the best playground buddy and Pokemon hunter.

 

This girl.  16 years old and no shame in her game.

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Pearl Jam at Fenway Park. Thank you for 25+ years of memories and an amazing Friday Fenway show!

The Cleary Cousins, circa 1982 or so, 1683 State Road, Plymouth MA.  We tried to recreate this pose in the picture below.

 

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