A Ramble today, an update this week.

Today was a shitty day. Everyone is allowed to have those, one of those sad, draining, exhausting, just ready for tomorrow, kind of days.  A lot of these days, I just write drafts and never post them for people to read.  However, more and more individuals write me and ask me how can I be so 'positive' all the time?  Which, do not get me wrong -- I love looking through life's lenses with a silver lining.  But, if you take a twenty nine year old Refractory Hodgkin's patient, diagnose her with MDS, then rip her guts out by watching a bombing happen in one of her home towns she lived in for six years, where her heart has resided forever... anyone is allowed to have one of those days.  And, I am far from positive twenty four seven.  We are all human.

This week I had planned to visit my friends from Wheelock College (located in Boston), at one of their houses in CT.  We had been planning this gathering for months and I was incredibly excited.  Earlier in the week, I went and visited my family, got a lovely hair cut and caught up with my favorite stylist.  And then, Thursday hit.  Raging fevers of 102.8/9, night sweats where we had to change sheets over and over again and midnight showers so I could sleep for more than one hour.  My cancer symptoms were raging.  So, O'connor and team upped my dose of 100mg SAHA (my first personal choice at a lower dose) to 200mg of SAHA.  Friday, and Saturday morning continued on this path, and finally... finally... Saturday late night, I found some relief.  Today, I literally just laid in bed, looking up at my ceiling thanking my lucky stars that I could breathe, that I wasn't drenched in wet clothing, that my body wasn't covered in beads of disgusting sweat, and that for the first time in days I could eat.   Today and the last few days were some shitty days.  There is nothing eloquent about it.  Tomorrow, we go in for blood work.  Tuesday we meet with O'connor, and most likely due to my MDS and teetering HGB and platelets from last week at only 100mgs, I will need some form of transfusion.  Fun.

This week will get better, it always does.  But this is a reality check, for those who think I only see pretty pink bows and the beautiful things in all the pain.  Most times, cancerville and now MDS world, are spent laying in bed, showering away fevers, taking temperatures, force-feeding food into your mouth, muscles and bones filled with chronic pain, and all over body nausea.  So, although I have nothing wonderful to write today... I'm sharing with you, my first reaction to my MDS diagnosis when I did not know or have any information, I just knew something was wrong, in early March.   Just remember, there are really really great, beautiful, wonderful days and I am always able to find something in each day to smile about -- but some days, are covered in shit.

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When I was eighteen I packed my bags and an overly wide smile to move to Boston where I attended undergraduate school for elementary education.  I had planned this move since I was nine, when my family visited Harvard Square and I fell in love with New England, the people, being near the ocean, the crisp fall leaves and the possibilities that it could lead me towards.  I entered college wanting to leave some really ugly pieces of my child hood and my home town behind me.  It was new, and I felt on top of the world.

When I (and my entire family) huffed it up there from Bucks County, PA to move me into the dorms,  I ran across the quad, in front of Peabody hall, towards my new roommate: Jen. Luckily she did the same as we encircled our arms around each other and jumped like naive (and happily-so) euphoric little school girls that just found their best friend and did not have a care in the world.  Not only did we find friendship within each other, and other life-long amazing friends too.  But we were passionate and had played basketball since childhood; in turn, we joined the DIII (ever losing) team at our school.  Two months into the season and the first semester of school our coach held our practice outside, in the cold rain.  We were to run as I recall a mile or so around the soccer fields, in the mud, with cold rain coating our bodies, and chilling us to the bone.

One week later, and weird, off the wall symptoms that only my college friends could understand, I was diagnosed with my first life threatening disease: MCD, Minimal Change of the Kidney.  My grandmother swears that my kidneys stopped functioning on their own because of that basketball practice.  To this day, my Nan still curses the ground that my old basketball coach walks on.

Two years later, hospitalizations, meds, high dose prednisone and cyclosporin, attending my first two years of college in Boston, I somehow hit a remission.  It was out of the blue and no one knew why I was cured or why all of a sudden my kidneys started working again.  It amazed me how much I changed from that young woman who ran across the quad to the week after the most grueling practice.  I also (in hindsight) never received at PET/CT scan.

Two years later, at the age of twenty one I moved (again) after graduation.  This time, I had my eyes set on Florida.  I grew up near the Jersey shore with my cousins every summer.  My Pop showed me (his first of eleven grandchildren) how to ride a bike on the Lavallete boardwalk.  My Nan taught me how the sea, the salt water, the sand healed.  The sun and the beach were calling me and so was my first teaching job.  I was an enthusiastic, less naive, but eager young woman.  I boxed up my 200 children's books I had been hoarding for years, my bathing suits, lesson plans, and an infectious smile as I arrived in Jacksonville, FL.  Here, I was the youngest teacher in a large school that pushed major literacy and curriculum boundaries, exposed my students to as many forms of culture, literature, and even holiday cheer (being one of the two Jewish teachers) in the school.  I spent my days in the classrooms, and weekends building fires on the beach, and throwing footballs in the ocean.  I overworked myself for every kid in my classroom, changing up my roles with a flip of a coin from teacher to counselor and even more -- and I loved and ate up every single fucking second of it.

This was the life I had planned.  I left behind my ugly childhood in Bucks County, Pa.  I left behind my MCD in Boston, and now Florida welcomed me with open arms.  During holiday break after celebrating getting through half of my first year of teaching I visited my uncle.  I pointed out a small bump on my collar bone.  Two weeks later I was diagnosed with Hodgkin's Lymphoma.  The last lesson I taught was about the human body, and how some of our cells aren't good cells and that's why we need tylenol or treatment (or in my case seven years of chemotherapy).  I left my 200 books, my 28 students, and my heart.  I never entered another classroom as a teacher again.

Seven years later, I am still fighting the same disease but a lot has changed.  My smile remains, however I'm pretty sure my nativity unfortunately has faded with the years of relapses.  With time, as you face a chronic/terminal disease you begin to understand how incredibly short this life is.  This past week I truly reflected back on my life thinking "What would I want to do that I really haven't done yet?" And to be honest, I have packed in so much within the last seven years that I really, truly know that I have accomplished (Masters Degree, Counseling Internship, Teaching, Healthy Relationships, Yoga, Traveling) so much, so so much.  I am extremely proud of myself for never taking one day for granted.  Which is something I will always pride myself in, because, you never know what is around the corner.

(I know this next part might be difficult to read, but please remember: We are all stronger than we think, and it will be okay).

At twenty eight I moved with my partner to Montclair, New Jersey.  We packed up my life in Bucks County, PA, this time, leaving behind good friends, family, amazing grad school friends, a beautiful apartment, memories of a Masters Graduation, a counseling internship, clients, an incredibly accomplished life.  My partner and I welcomed Montclair with open arms, being near my cousins and grandmother.  New professional opportunities, closer to my medical team, a gorgeous apartment and a shorter commute for my love.  Life was again and still does move forward, it always will (trust me).  Three months after moving and unpacking our new lives, small red flags began to rise.  No longer being naive, a bone marrow biopsy was requested.  One week later I was diagnosed with early, low-risk stage of Myelodysplastic Syndrome (MDS).

We now begin to strategize treatments for the future around HL and MDS, and begin to research paths for an allo transplant in the distance future.  This hasn't changed everything as far as a treatment plan, it just limits a lot of treatments.  We do not have as many options, and an allo will now be on our radar.

Like always, we take one step at a time.  However, this time as I look at myself without a smile, and too much medical information for any non-med student to know at twenty nine, I find myself yearning for those days... those days of nativity and youth.  I find myself thinking, jesus, I must've really won the jackpot: three life threatening diseases before the age of thirty. Lucky me.

Yeah, we're allowed to have shitty days.

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Sending Light,
B.