In the Blue

I'm a Pisces, by sign and as both my Irish-Catholic Nan and Jewish Bubba would say -- by heart.  The identified sign of a Pisces are two fish.  Though the description of my sign bodes well with my personality, it is the Pisces element of water, the ocean, and finding relief in these pools of relaxation that I find most congruent.  I am always so grateful looking back on my childhood and remembering specific moments of relaxation and tranquility surrounded by what I considered pools of heaven.

I grew up with my brother, and my nine cousins on the Jersey Shore every summer at our grandparents tiny bungalow near the ocean.  My other earlier memories of holding my breath for just a few seconds were at my Uncle Jay and Aunt Bobbie's pool.  Both the men on my father's side were once life guards, and with my mother's family rolling around in the ocean even before they came out of the womb -- I was bread to swim, and I loved it.  But my very first water experience was with my mother at a babies YMCA course.  She tells me that while all the babies were screaming, I just looked up and kept smiling and cooing at her.  And it just continues on, at three months I spent my toes in and out of the Atlantic Ocean.  My family told me they started bringing me into the water at my uncle's as early as one year.  I started swimming on my own at five or six.  And I started training to swim my entire uncle's pool without taking one breath at age seven, accomplishing the goal at age nine.  The water was my home, being under water was my haven.  Now, even at age twenty- nine one of my greatest loves (even though I've only been a few times) is snorkeling.  Being under the water, and not hearing nor thinking about what is above.  Just disappearing and watching the beauty, floating, life is effortless in the blue. Effortless, when you can breathe... and stay under at the same time.

However, as much as water is my haven, it's only when you are able to stay under when snorkeling and have your breathing tube, is it truly relaxing.  Holding your breath in any other way, is straining.

Last June, after our beautiful trip to Hawaii I started becoming really ill again for the first time in a year.    The cancer started progressing but we weren't sure if it was cancer, or a kidney infection -- or both.  It was a summer of pure hell. I don't think I made it to the beach twice, if that.  I was in bed, in a hospital, or at Dr. O's.  It took us all summer to differentiate the kidney infection, plus cancer progression.  If you believe in signs, phases or cycles, last year felt like one as before I fell ill I lost my grandfather (of those eleven grandchildren that adored him and flocked to him at the Jersey Shore).   I lost Lily, my companion of fourteen years,  I lost my summer, and this fall my grandmother after losing her husband she lost her home: her beach bungalow, her independence, and our future summers, due to Hurricane Sandy.

Following my lost summer, and Hurricane Sandy, Revlimid prevented me from hardly any quality of life. I had amazing moments this year.  Unfortunately, I can count the weeks I was out of bed, out of the hospital, or out of Dr. O's office on one hand.  Between one of my college friend's weddings and Florida which were the two highlights of my year since last June.  I am fortunate to have those memories.  I am fortunate I was able to not have shingles, not be hospitalized, not be hooked up to fluids or blood for those few weeks.  But the rest, since last June I've been grasping for breath.  Straining.

After the blows of Revlimid, and the diagnosis of MDS, and now onto a new treatment that will hopefully help manage the MDS and chip away at the cancer.  It's once again been a rough start for several reasons.  A few weeks ago I began having classic "B" Hodgkin's symptoms (fevers, night sweats, chills, over and over).  These symptoms make you feel as though you've run marathon after marathon and are drained only to gear up for the next night of symptoms and hope that you are at least able to sleep a few hours between changing, showering, and breathing through the pain and fevers.  To give Dr. O credit where it is due, he did ask me to start at 400 mgs of SAHA to begin this treatment.  I refused knowing I am the side effect queen.  Unfortunately, I began at 100 mgs which has been an uphill battle since.  Every week I started a dose, the "B" symptoms have subsided.  Then, on a Wednesday or Thursday they rage back even worse than the last time.  Thus, we up the dose to 200mgs. Now we are up to 400 mgs, a normal dose -- it has been one night and nothing has subsided yet but I am predicting it will soon. In hindsight, Dr. O and I joked about how maybe next time I should listen to a world renown oncologist, instead of a twenty-nine year old with a masters degree in counseling.  And, I will in the future -- for a majority of the time ;). Something wonderful I am holding onto is that my ESR/SED rate before the SAHA while I was off treatment was 110, now with only a light dose of the SAHA it has come down to 80.  We will take that -- small improvements.

My timeline starts in June, not January this year like most people.  I start from June because that's when I started holding my breath.  I feel like I am seven again, trying to get to the other side of my Uncle Jay's pool.  Loving my life, loving the water I am in but determined to get to the other side.  Each time I think I am close to holding my breath and reaching the other side, my side of relief, breath, love, calm and still.  My side of no more pain, fevers, night sweats, canceling plans, losing weight, taking ten pills a day.  I have been struggling, straining.. grasping to stay under water, between the losses, disease progression, change of treatments, thinking... we will get there. I will be able to release.  It will all come soon.  However, with most of these thoughts I've come to breath too soon, I haven't reached any relief. In fact, I've swam back to the beginning and started the process all over again, week by week, or month by month.

But now,  I can see the other side of the pool, just as I did on those sweet summer days in the cool water where the colored tiled walls of the outskirts of the pool gave signal to reaching the perimeter.  This time, I really think I might touch it.  I just have to hold my breath a bit longer.  I have to keep pushing forward, moving, swimming towards it.  Then I'll be able to take my breath and I can once again enjoy the amazingness around me, the effortlessness that was here last June.  Then, I can embrace the rebound, the rebuild, the strong breath that I am so desperately yearning for... and a new cycle this June.

Let's just hope it all comes soon.

Another June of rebuilding, summer after transplant in 2008. 

Lastly: I will definitely have a 'thank you donation' post very soon, as I track all of the wonderful, amazing donors that are going to make Seattle and few other transplant research visits possible this summer.  I can not thank you enough for your generosity and continued support and confidence in me as I continue this fight.  As always, every penny helps and if you would like to contribute, just click on the 'donate' button over to the right hand side of the blog under the 'Labels' section.

Sending love and sunshine,

B.

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.

A New Chapter: MDS

This has probably been one of the more difficult posts I've had to write.  Difficult for many reasons, but mostly because of the dissapointment and a little heartbreak that it's caused some people.  Even though, as I explain as best as I can, it shouldn't.  So, I will try my best (try to stay patient with me) as I struggle through this post.

After you are in the cancer world for a while, there isn't much that shocks you anymore.  Some people may say you're jaded or tainted, but I think as time moves on we have a better comprehension of the medical world.  We understand that there are always options, there are second and third opinions to search for, nothing is cut and dry, nothing is black and white, we live in a gray gray world.  So when something we weren't prepared for comes our way, at least for me, it takes a bit to digest but then as information is collected, we soon form plans and we move.  We move slowly, as one of my favorite caretakers in the HL world has told me.  We move slowly. And we do, even with this piece of information.

After seven years of chemotherapy your body can take quite a beating. There are several things that can happen to an individual with that amount of chemotherapy.  You can develop secondary cancers depending on your previous treatments.  Your lungs can start struggling, your heart may not be as strong, your bones can begin to deteriorate.  It's a scary secondary diagnosis world out there -- even for someone as young as I am.  Luckily, none of these diagnoses have happened at this time.

However, there is something that has occurred.  Right after Florida, I received a bone marrow biopsy from O and my medical team.   Previously, on the Revlimid my Hemoglobin (red blood cell production) was taking a nose dive, and then performing at normal levels.  Something was off.  Which is why we went forward with the bone marrow biopsy.  The biopsy revealed abnormalities. Some of them which could have been caused by the Revlimid, but one that indicated I have early stages of Myelodysplastic Syndromes also known as MDS.  In many ways it is considered a disorder that if not treated could lead to leukemia, if you have an aggressive stage.  Luckily, I am at an extremely early and low-risk stage of MDS.

After seven years of chemotherapy, my bone marrow has taken a bit of a beating, and it is showing dsyplastic abnormalities.  Which is why this is considered Secondary MDS, because it is caused by the amount of chemotherapy I've had over the years.  Robin Roberts, if you've followed her also had MDS due to her previous chemotherapy; however, I believe hers was more aggressive.

MDS for those who aren't in the medical field is when your stem cells (which produce your white/red blood cells and platelets) aren't able to fully produce to its evolved level.  Which means you may not have enough red blood cells working in your body, which has been my case in the past.  Right now, fortunately, all of my counts are normal since discontinuing Revlimid.  However, I have a very rare form of MDS called Refractory Anemia with Ringed Sideroblasts (RARS).  This means that I have less than 5% of potential leukemia blasts (precancerous cells) in my bone marrow (I have zero), and more than 15% of ringed sideroblasts (I have 18%). Luckily, sideroblasts are do not turn into anything.  They are just abnormal cells that do not fully produce into your red or white blood cells (that need to, which is why I'm lacking them), but they are not negative or positive.  They are just the percentage that should be evolving into healthy cells that aren't.  So, 18 percent of my stem cells aren't using their full potential at the moment.  

Within the last few weeks, we have met with Columbia's MDS specialist and discussed a lot of overwhelming information which I will do my best to explain and discuss with all of you over time.  For now though this is not a crisis or alarming diagnosis, please know that.  I am in a very, very early stage and very, very low risk.  MDS low and high risk is determined by three factors: How your blood counts are doing (off treatment), Chromosome damage, and how many "Blasts" you have in your bone marrow. Right now, I have none of these factors which makes me low-risk MDS.  Dr. Raza, the MDS specialist, stated that if I was a normal MDS patient and was not looking at anymore chemo, that we would not do anything at the moment.  We would just watch and wait, for years probably.  MDS at this stage is looked at as pre-cancerous cells, and for some they never form, at all. For others, they do.  If they do, an allo-transplant is the cure. 

Ironic huh? The one treatment I have been avoiding for my Hodgkin's Lymphoma for years would potentially cure the HL and the MDS.  Life certainly knows how to make us laugh sometimes. 

Since I am NOT a normal patient, this is what this diagnosis means for me at the moment:

Short Term: 

• My Red Blood Cells will probably give me trouble during treatment, this will mean I need transfusions (hopefully not too often), but I need to be prepared.
• We will also attempt Red Blood Cell Booster Shots to help my Red Blood Cells
• We have to avoid "hard chemotherapy" (Bendamustine, ICE, GND, ect.) Any form of therapy that is not targeted and is a 'stem cell chemo killer,' we can no longer utilize as treatment.
• Having MDS makes me ineligible for some clinical trials, and crosses other hard chemotherapies off of our list.  The result: we will not have as many options as we once had before this diagnosis and have to be more careful
• We will continue on with the treatments we do have, just as we have been to treat the HL.  At the moment we will revisit SAHA at a baby dose. SAHA is also a management treatment for MDS.
• We are researching for future allo-transplant treatments, now. We are so grateful for all the donations that we've recently received thus far.  If you would like to help us travel to Seattle and other cancer facilities for us to continue our research and where a potential future transplant could take place. Please read this post: click here. Or look to your right and click on the "Donate" button under "Donation to Treatment Travel." 

Long Term: 

• We are hoping we will be able to continue with non-stemcell chemo killer treatments for as long as we can.  This could be a year, two years, or more. 
• We will be balancing killing the Lymphoma with being gentle with my blood cells. The tricky part will be to treat the HL but not let my red blood cells go too low. This might be easy or difficult, we won't know until we start this first treatment.
• An Allo-transplant has always been in the far off distance for me as the ultimate last option for my Lymphoma.  I have wanted to exhaust ALL options for my HL before jumping into that boat.  An Allo (donor cell transplant) at this time will now be on the radar.  We will be doing our research this summer and preparing as much as we can with information, cancer facilities, medical teams, and clinical trials.  We want to be prepared, informed, and educated.  
• The Allo can potentially treat and cure both my HL and MDS.  It would give me new bone marrow (a new healthy immune system), and rid this body of disease.  However, it is a risky procedure that has concerning mortality rate, and I've watched many other friends still relapse after this long, grueling, procedure that is months to years of recovery. 
• There will come a point when my cells can no longer handle chemotherapy, a point when my red cells may not recover during treatment.  We do not have a clear idea when this day will come, but when it does this will signal that we have to being prepping for the allo-transplant. Hopefully it is not for a few more years, but we will be ready no matter when it comes. 

So, my friends.  I realize that this is an overwhelming amount of information for all of you to read.  As stated before, it has been difficult to write as I do not want to alarm anyone.  For now, we continue just as we did before the diagnosis.  Ultimately, the diagnosis does not change our path or course of treatment it just gives us some limitations and pieces of information to help us as we move forward.

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Lots of people at this point in time when there are bumps in the road or a new challenge ask me: What can I do? And this time -- I have an answer.  Think about being a stem cell/bone marrow donor.  Being a donor is not an invasive process at all. When you donate, it is literally just like taking blood.  There is no surgery, no one digs into your bones, no one punctures your bone to get into your bone marrow.  It is nothing like that at all.  You literally, will be giving blood -- and a machine will separate your stem cells from your blood. That is it! So, think about this. It could potentially save my life, or someone else's.

Register online here:

http://marrow.org/Home.aspx

Easy as one, two three.  If you read this blog, and are healthy. I ask you to please, consider registering.  When/if you do, I'd love to hear about it in the comments section.  Let's start a small, "B movement." for donors if we can.

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Tomorrow I meet with O'connor and team to begin to discuss new treatment protocol of SAHA.  Our hope is little to no side effects, strong red blood cells, and an April filled with beautiful sunshine.  And we will move slowly, never hurry, and continue on.


Today I'm going to leave you all with a small grateful list. I write one everyday.
1. Sunshine
2. Tylenol and pain medication
3. New Smoothie Recipes
4. My Cousins, I love my cousins
5. Poetry, more specifically today, Charles Bukowski.

Sending so much love to you and yours,
B.