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.

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

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

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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.

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For more information about the Landmark Forum visit their website https://www.landmarkworldwide.com

Ladybirthday

Easy like Sunday morning

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You too, buddy.

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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.

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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.<
ut 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.

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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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caption id="attachment_1997" align="alignnone" width="2816"]momandD2months Me with my sweet boy at 2 months old.[/caption]<<<<
tion id="attachment_1998" align="alignnone" width="2448"]boyshug2013 Dylan on his 7th birthday, first day of 1st grade for him, 1st day of preschool for Cooper.[/caption]<<<<
tion id="attachment_1999" align="alignnone" width="1887"]Dpinewood2015 Dylan in 2015 at age 8, proudly displaying his Cub Scout Pinewood Derby 1st place trophy.[/caption]<<<<
tion id="attachment_2000" align="alignnone" width="1280"]cruiseD&D2017 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.[/caption]

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 mouth, 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 , , , , , , , , , , | 16 Comments