Green Light.

After my small Florida retreat, Rich and I hit the ground running with pre-transplant appointments.  From heart, to lungs, bone marrow biopsies to teeth and eyes, and more. Oy vey, it's been a very long and painful two weeks.  But we are almost there. Although the plan of attack was to do one more round of chemo and then transplant, things have changed. Due to being in remission and some appointments finishing up on time it looks like we'll (possibly) be moving into my allogeneic stem-cell transplantation in April.  So get ready… cause here we go.

I have officially been cleared on all fronts except for my teeth.  Last week I had a ton of dental work done (chemo completely destroys teeth, even if you take incredible care of them).  I had molars extracted, fillings, and so much more -- fun times.

On Monday, I'll go in to the dentist to make sure I'm officially 'healed' and cleared for transplant.  From then, we'll have an eye appointment Tuesday morning and I will finally be cleared.  If for some reason my dentist does not feel I've healed well enough -- this time line might change.  However, this is what we're looking at as of now...

Bekah's Transplant Timeline: 

• Monday, April 21st: Final Dental Appointment (and a hopeful clearance from the dentist)
• Tuesday, April 22nd: Optomology Appointment (hopeful clearance)
• Wednesday April 23rd: Clinic Appointment with Dr. Zain and team, admittance to hospital that afternoon/evening
• Thursday April 24th --  Monday, April 28th: Conditioning Chemotherapy for five days of Flubaradine and Melphalan chemo, this will bring all of my blood counts down to zero.
• Sunday April 28th, 29th and/or 30th: Jacob (my hero of a brother) will begin/complete his stem cell collection
• Tuesday April 29th OR Wednesday April 30th: My Re-Birthday, I will intravenously be infused with Jacob's stem cells. 
• May 1st -- and beyond: Hospital Isolation until cells have completely engrafted and then Release Day. This usually takes 15 to 30 days till I'll officially be released from the bone marrow unit.

After the cells have been infused, we wait for my cells to 'engraft' or to 'take' -- meaning, that Jacob's cells will take over my immune system, and I will have his cells and his DNA.  Please send positive thoughts that Jacob will feel little to no pain during his collection, that engraftment will be a success, and that my cell/blood counts will begin to rise after this small but powerful infusion of Jacob's cells.

As we've found out in the last month, things can change on a dime.  So, although this is a hopeful timeline we've learned to roll with the punches, and go with whatever changes are needed.  If you don't see an update, this is how the timeline will stay.  If there is a major change, I will update you all as needed.

Mentally, I feel prepared.  We've been preparing for this since we left for Seattle almost a year ago.  With a remission in our back pocket, a blessing from Dr. O and his team, a ridiculsouly supportive partner, loving family and just kick-ass friends.  I am so grateful for all the support, emotionally, physically, and financially that has been given to us.  We hear you, we're receiving your vibes, and thoughts, and we really do love you all for everything you've done for us through this process.

For communication purposes and support through this process:  The best way to communicate directly with me is through text message or through email (RebekahFurey@mac.com).  But please do not expect a timely response.  If you are looking for updates we will update through the blog and through the True-Beauty-Never-Hurries Facebook as much as we can when we feel there needs to be a crucial update.  If you need to know something specific or check-in with us in need of a timely response, please call, text or email Rich.  We will do our best to respond and send out updates when needed.


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Supporting someone and their caregiver can be difficult through the transplant process so here are some small bullet points that I thought might help all of us:

What helps through transplant…

• Research: First things first, it may help you to know know what I'm about to go through: Read some quick cliff notes on what a stem-cell transplant or others call it a bone marrow transplant.  Click here to learn about stem-cell transplant.  Mine will be an allogeneic transplant (stem cells from another donor -- my brother).  I already had an auto-transplant (my own stem cells rein fused into me) in 2007/2008.

• Mentally:  As most of you know this is not my first rodeo.  What really helped in the past and through the last few years is text or email messages reminding me that you're still thinking of us, and cheering for us through this very difficult procedure.  A small "thinking of you…." or "I'm sending you big hugs or healing vibes" goes a long, long way for a patient's mentality. As well as the caregivers.  Send us your love -- we welcome it with open arms.  And it keeps us moving forward. It really does…

• Financially:  Rich is currently not working due to being my full-time caretaker, and our medical and daily bills are piling up.  Please visit my tax-deductible fundraising website: HelpHopeLive to donate money directly.  Or pick up a cool 'B.Strong' sweatshirt OR 'B.Strong' T-shirt (both have different designs and are on different websites) the proceeds will go directly towards funding my transplant.  They are being sold through May 12th.

         I am so, so, grateful towards those who have donated thus far; however, Medicare will only cover  
         80% of this stem-cell transplant, so we are in desperate need of funds.  Again we thank all of you
         who have donated already, and those who participated in our recent Stella & Dot fundraiser
         (you raised 800 dollars!).  I truly can't thank you all enough…

• Physically: Cards, emails and your words.  Once we have our hospital address, we will let all of you know.  If you are interested in sending something, please email Rich and he will send it to you.  Or you are welcome to send me an email: RebekahFurey@mac.com.  Once we are allowed visitors (after Jacob's donation) we'll be welcoming home-cooked meals in the hospital (and after release day), as well as those who love to clean to use your cleaning skills to clean our apartment before I am released back home -- it must be 100% germ free (help!)

• Above all, we ask you to support other warriors in the most important way possible… 

Pay it Forward:  Join the Bone Marrow Registry.  

       
         I am so, so incredibly lucky that Jacob is a perfect 10/10 HLA match to move forward with my

         transplant.  However, not all Lymphoma and Leukemia patients are as lucky.  

         Join 'Be The Match', join the bone marrow registry for FREE.  Just fill out some forms, they will 

         send a kit for you to swab inside your cheek and you could literally donate your stem cells (it's    
         just like giving blood) to a stranger, and save his or her life.  Think about it -- then do it.  I have
         many, many friends right now waiting for their perfect match -- it could be you.    

What does not help through transplant….

• Expecting a response.  I always tell my friends and family they are free and welcome to send messages (hopefully uplifting ones!) through this process.  But please know this is a different ball game.  This is life or death here and it can be a very stressful process.  We will do our best to notify those with updates when it is necessary.  For us, we really try to take everything a day at a time.  Sometimes that means shutting off our phones, sometimes that means just not responding to the outside world, sometimes that means just taking things an hour at a time.  We will do our best to respond to everyone in a timely manner, but we just ask for as much space and patience as you're willing to give us.

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This is the first step to what we hope will be a very long journey of healing… once the donation of cells are complete, it is truly only the beginning.  We have great fears and great hopes, but the outcome of this process is completely unknown.  We could receive a remission from Refractory Hodgkin's Lymphoma (HL) and the Myelodysplastic Syndrome (MDS), or I could relapse with both diseases and even be diagnosed with a a third Graft verse Host Disease (GvHD).  I may survive, or I may not.  Whatever the outcome, we will take this new path one day at a time.  And remain hopeful.  Very, hopeful.

You will find the most recent updates on my Facebook Page, feel free to click here and add me as a friend as family and friends will be updating throughout this process to keep everyone informed too.
Click here: https://www.facebook.com/truebeauty.neverhurries

Please send positive vibes that we'll receive clearance on Monday and Tuesday so we can get the ball rolling and start.  Today, and everyday as we move forward we're choosing hope.  We ask you to please remain hopeful with us too, no matter how challenging these next few weeks and months will be. We choose hope.

And as we all know, life can be sweet -- 

even in the broken places… 

Sending all of you so much love and light,

B.

A Sweet remission!

It's been a long time coming, but we finally got here: 

a COMPLETE remission!

On March 17th, I finally received my remission to start planning the next phase of treatment: An allo-stem cell (donor) transplant.  There are many appointments (doctor and dental), testing, and meetings to occur… but we finally are able to take steps forward to complete this allo-transplant.

Here is our time line as of now:

Yesterday and the 18th of March, I received my fifth round of Bretuximab (SGN-35) and Bendamustine chemotherapy.  We also met with the dietitian, social worker, and financial aid from Columbia at NYP.  However, there is still a LOT to get done. It has been a busy week, and tomorrow we meet with Columbia's dentist, an Echo, EKG, X-rays, receive a Nulesta shot, and run a CBC in case I need extra platelets and/or blood transfusions.

• In the next month: If we are able to fit in all of my appointments, a bone marrow biopsy, Jacob's (my lovely brother/donor) appointments, tests, and treat my teeth (unfortunately with each chemo treatment, more cavities add up which is difficult without dental insurance…) Without causing any infections then we can proceed to transplant in Mid to late April.  Our goal is to only have four weeks between my last chemo treatment (March 18th and 19th) to the first day of being admitted to the hospital.  Which land us on April 14thish.

• IF we are unable to complete all of these appointments and tests, or an infection does arise, or all of our ducks are not in align. We will do one last round of chemo the week of April 14th, and then proceed to my allo transplant in Mid-May.  

• We want to take these next steps carefully and make sure that everything moves forward smoothly.  So that is the plan of attack for now.  As the weeks move on, I will update more to inform those of you when I will be admitted to the hospital, if I'll be receiving any form of radiation, and how many days of intensive chemo I will have to endure in the hospital before my allo-stem cell, to rid my bone marrow of all cells.  Basically this will be a re-boot and I'll start over with Jacob's cells, which means my bone marrow has to be cleaned out by one last hit of intensive chemo (inpatient) the week before I receive my donor cells.

I know, I know, it can be very confusing.  So for now, just know we have achieved a remission -- the first step to this transplant process! And we are still in need of funds even though we are receiving treatment in NYC, for dental, transportation, covering 20% of health insurance (copays, medications/scripts, Jacob's transportation, our rent, and so many other fun bills that we get to pay along the way.).

• So please, please, help and donate to our transplant fund as we make our way towards curing my MDS and hopefully finding a cure for this stubborn cancer. Click HERE: Every donation is tax deductible. 

          Or follow click and paste the website…
          https://m.helphopelive.org/find-a-patient/profile/index.cfm/patient/78B0798F-E787-5EE8-
          F78097B407B3CFCD



Here's to a sweet remission, the first day of spring,
and all of your wonderful support.

Love,
B!

...and exhale.

Every time I quietly rebound, even if it is just enough to go food shopping for one day, I am always in awe of this tiny body of mine.  I'm incredibly shocked how strong the human body is in general. And I am so grateful this has been the case this week.

Just last week my kidneys were in shut down mode and I could not get out of bed, nor hardly walk to the bathroom, or have enough energy to shower.  This time last week, I couldn't move. The poison I was feeding my body was obviously a little too much.  It's amazing what a few days can do.

Yesterday and today have just been life changing.  Although I strive for so much balance in my life, this disease can make it incredibly difficult; as at times, my body feels so bi-polar.  One day I am cursing up at the heavens to allow me to have a pain free hour, literally just one hour.  Praying that I would give anything to not feel discomfort, pain, nausea, fevers, ect.  Then the next day, my legs carry me through my apartment, to whole foods, and on a walk in the park, with my normal chronic pain, but nothing compared to what I went through last week.

Today my house is now filled with a scented candle from my mother, hydrangeas, a fridge full of fresh food, and in my jewelry box lays a new beautiful, leafed-necklace I received from my partner, almost a token of victory after being released form the hospital.  One which made me cry like an infant, showing how grateful and vulnerable I am for these last forty eight hours.

My body is euphoric when it comes to this point of relief.  A point without drugs, without fevers, without hardly any medication to speak of.  And just like that, from feeling like the shit on the bottom of someone's dirty boots, my body, even if it is only for a few days, quietly, softly, rebounds.  

Normally, during these moments I call everyone I know and plan outings.  This round, I am stepping out of the ring and have decided I need to take whatever time I do have and focus on rebuilding and not setting myself up for failure. I tend to plan, only to cancel, which leaves me mentally exhausted and disappointed.  Finally, I think I am learning.

I write this post with the utmost hesitancy, since I know in a matter of days we could switch to another level of health.  If my body continues to stay strong and counts stable, then I am free until the 22nd where I will be meeting with O to discuss next steps.  But for today, the sun is shinning, I am eating, the house smells of beautiful scents, and I am prepping to cook a dinner for myself for the first time in weeks.

I've finally taken a breath, even if it is just for yesterday, today and hopefully tomorrow.  Quietly, I am cheering, as I can no longer describe the essence of how good it feels to look at that pool again, be sitting on the steps, and just breathing.  Maybe someday, I will get to the other side.

But for today, I'm just thankful to be above water and exhale. 

Here's to small victories. 

xoxo,

B.  

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.

------


Sending Light,
B.

let's go, twenty thirteen.

Since November, I celebrated and survived packing, moving, unpacking, holidays in a new city, a case of face-shingles, a trip to New England, celebrating a good college friend's wedding, new years, and prepping for my first interview.

The year is starting off with a huge and exciting bang, and an ESR/SED rate of SIX.  Normalcy is starting to set in again, and goodness it feels so good.  Here's to lucky (twenty) thirteen with lots of health and happiness!

The beginnings of our new home..

My crazy shingles while packing up my old apartment.  

It's NEVER dull being a cancer patient :)

For HLers: If you suspect any form of odd bumps/shingles, make sure to call your onc immediately. 

Thankfully this cleared up within three weeks... 

Thankfully, I was able to put on a good face for the wedding 

since it all cleared after some quick emergency doctor visits and meds!

New Year's Wedding!

One giggly, amazing couple 

College loves..

Here's to remembering and honoring those that we lost in twenty twelve,
and celebrating life to fullest in their memory, during twenty thirteen.

love,
b!

For those who relapsed after an Auto-SCT or are Refractory Hodgkin's Lymphoma Patients:

This post is for any individual who has relapsed after an auto-stem cell transplant or has refractory Hodgkin's Lymphoma.  I have also attached it to the top tool bar of the blog so you are able to access it at any given time.  I hope this helps.

-----

I am Refractory (ABVD, BEACOPP and other first line treatments are not working)/I Relapsed after Transplant: What Next?

It has been an absolute honor and incredible struggle to be part of the Hodgkin's Refractory Community.  The souls I have met and crossed paths with have changed my life dramatically; however, living with this disease on a daily basis is not the easiest of lifestyles.

Due to creating so many relationships with other Hodgkin's Lymphoma Patients, it has come to our (the HL commuinty) attention that there is not enough information or guidance when a Hodgkin's patient relapses after an auto-transplant.  Since Hodgkin's disease is rare to begin with, and the cure rate is so high there are a small population of us who unfortunately do relapse.  Therefore the next steps after an auto-transplant are crucial to your body, your survival rate, and your mental health.  

Most general oncologists, although they are very well educated may not be well-versed in relapsed/refractory HL due to it's rarity.  In turn, they may or may not be aware of various options for their patient.  When you relapse and you are under a general oncologist, he or she can only provide you treatment that your specific hospital provides.  Therefore, your next steps are critical to receive the best treatment for your specific disease.

I feel so fortunate that other Refractory HLers reached out to me during my time of relapse, and educated me on  how to make the best choices despite my circumstances.  I felt it was only necessary to do the same for others...

Steps to take if you are refractory and or you have relapsed after Transplant: 

Be aware that you have many options.  And options give us hope for the future.  These next steps are difficult, but trust me, they are doable.  There are many of us out in the HL community who live long lives being treated with clinical trials or receive an allo-transplant and are alive today.

Review where you are located, who is treating you, and ask yourself these questions

• Am I being treated by a lymphoma specialist?
• Has my oncologist treated relapsed Hodgkin's Lymphoma before? Has he/she treated MORE than five patients?
• Am I being treated at a major cancer facility?
• Can my oncologist offer me other options besides an allo-transplant? 
• Have you sent you files elsewhere and received a second opinion? 

If your answers are no, this needs to change for your next set of treatments.  Refractory HL is a specific and unique disease, unlike the normal HL treatment protocols.  It requires a tailored treatment for your individual disease and only professionals with experience treating refractory HL should care for your disease, no exceptions. (No exceptions meaning, you need to put aside finances, health insurance, time, and be willing to travel  to a specialist if you want a longer survival rate).

Go see the top specialists for Refractory HL in the country.  This is in your best interest if you have relapsed after an auto-transplant to distinguish a short and long term plan.  Call and consult with Dr. Anas Younes or Dr. Owen O'connor. They are both able to offer multiple options of clinical trials and discuss different transplant options, as well as their medical opinion of which track you should choose determined by your individuals disease.  Be your own advocate, your cancer is serious but with tailored treatment you can be okay.  This means, even if you can not manage a flight for a consult, email Dr. Younes or Dr. O'connor.  When you email them include: Name, Location, Treatment History (hospital locations and oncologists you were treated by). Be short and to the point, but pack it with as much helpful information for these professionals to help you.

• Dr. Anas Younes

         Memorial Sloan Kettering Cancer Center

         New York, NY

         New Patients Phone#: 646-497-9137

         General Phone#: 212-639-7715 

• Dr. Owen O'connor
  The Center for Lymphoid Malignancies
  
  Oncology Nurse Practitioner
  The Center for Lymphoid Malignancies
  51 West 51st Street, Suite 200
  New York, NY 10019
  Phone #: 212-326-5720
  Fax #: 212-326-5725
  Email: oo2130@mail.cumc.columbia.edu

Be aware that the next FDA approved drug used for Refractory HL is SGN-35 also known as Adcetris. And there are other options... Most major cancer facilities and lymphoma specialists should have this form of treatment.  There are many individuals who have reached remissions with this treatment, or utililized it to bridge them to an allo-transplant, or received this drug for managed treatment.  Either way, it is a successful drug and it should be on your radar if you have relapsed or are refractory.  

• EBV+ Clinical Trial: Ask your oncologist to test your tumor block for  EBV+ tumors/Epstein Barr Virus positive tumors (not your blood, your actual tumor block).  You can do this by calling pathology yourself and requesting the test.  If you have an EBV+ tumor, you might want to consider before all else a non-toxic clinical trial first.  Read more on that trial here oh and here. 

• Revlimid: Many Refractory HLers are seeing positive results from this drug, normally used for Myeloma patients 

• SGN-35 + Bendamustine: Combination used in several clinical trials that are happening in the U.S. (Go to www.clinicaltrials.gov and use the search engine by putting in "Refractory Hodgkin's Lymphoma)

*Click Here to view a current list of open Refractory HL clinical trials.   For you to do more searches, keep in mind what phase these treatments are on. Phase I, II, or III. (The higher the phase, provides a higher form of research). 

Do not make a quick treatment decision.  There is always time for a second opinion. Educate yourself.  Above all, remember there is always time for a second opinion.   SGN-35/Adcetris may be your first option; however, you most likely will be faced with the decision if SGN-35 does not put you into remission.  Will you want to pursue an allo-transplant, which has a chance of a cure but has high risks OR maintain your disease through managed care such as various clinical trials that are on the horizon?  Both options have pros and cons and it is critical that you ask your oncology team difficult questions to make the most informed decision for yourself.  Either way, collect information from you oncology team, seek out second and third opinions, and weigh all of your options.  

It is a very personal decision, and only you know what will be best for you.  Please remember everyone's Refractory HL disease is different some of us have more aggressive HL, others are chemo-sensitive but very refractory (disease responds but continues to come back after treatment), and others disease never goes away but is not very aggressive.  Due to YOUR individual disease, a lymphoma specialist, especially the two above will be the best doctors to determine what route: clinical trial vs allo-transplant you should be treated with. 

• I encourage you to read some of the following on this topic.  
• Written by Alison, mother of Adrienne: Cure vs. Management
• Research clinical trials around the country/world for Refractory HL at: clinical trials.
• Visit other educated Refractory Lymphoma patients on the Refractory Facebook Group and Hodgkin's Forum. 
• If thinking about an allo-transplant research articles such as this one, oh and this one.

Ask Hard questions. This is your life. Ask those hard questions, even if it is difficult to hear. You are putting your life in your specialists hands. When you are faced with an allo-transplant or a clinical trial.  Remember to ask your specialist the following:

• For those facing an allo:

• How many relapsed/refractory Hodkgin's Lymphoma patients have you treated?
• How many of those patients have achieved a remission? A five year remission?
• Discuss GvHD: How do you treat it? How many of your patients experienced Grade 3 or 4 GvHD? 
• What is the percentage or mortality or survival rate of those treated with allo-transplant? 
• How many patients have reached a remission and have low to little GvHD that you have treated? 
• Discuss side effects, ALL of them. Even those that are 'rare.'
• Will this prevent/exclude me from receiving other treatments?

• When faced with a clinical trial:
• What phase trial is this? (one through four, four being the safest). 
• How many relapsed refractory HLers have enrolled in this trial?
• How many of those HLers responded? Partial Remission? Complete Remission? 
• What are the side effects? How will we manage these side effects?
• What is the mortality or survival rate?
• Will this prevent/exclude me from receiving other treatments?

Utilize resources available to receive the best treatment you deserve.  Do you have financial constraints and can not pay for a plane ticket, pay for lodging, food, act? 

• Visit Corporate Angels, they will fly you for free. 
• Stay at Hope Lodge, a free facility for Cancer Patients in New York City.
• Reach out to your Leukemia and Lymphoma Chapter for financial support.

Please remember it is possible to live with this illness for a majority of Refractory HLers.  It is your job as a patient or caregiver to seek out the best medical treatment, be willing to travel and ask your team difficult questions to receive specific treatment for you or your family member, friend, ect.

Above all, remember that with options there is hope, and there are many, many options for all of us. 

Sending love and tons of light to you,

B. 

Two thumbs up for Revlimid

Yesterday we received scan results after being treated with Revlimid for two months...

With two thumbs up from Dr. O'connor and my wonderful partner, we were all excited to hear that the Revlimid is not only working, but it is working quickly, and very well against my tumors.   All of my nodes have decreased significant amounts.  None of them are 'stable' or have 'mixed' results.  For the first time in a while, everything is decreasing from starting with 3-4 cm nodes before treatment, to now only having nodes between .5 and 1.8 cms.  And for those taking note, my SED rate is down to 15 (hot damn, it's in normal healthy range). We are absolutely thrilled. And although there has been a lot of loss lately in the HL community and on the east coast, we take this small kernel of good news and are running with it...

Revlimid is suppose to be a slow-acting drug on 20mgs.  So all of us were a bit surprised that there was such a dramatic decrease since I was treated with 10mgs over a period of two months. Thankfully, almost all of my side effects have subsided and I am now tolerating the drug much better, except for some neuropathy and fatigue.  Due to these factors, O'connor believes this will be a very positive drug for my future.  

After the last six months, it finally feels like we are leaving behind the roller coaster of unknowns and are approaching stability and some form of normalcy again.  It hasn't quite sunk in yet, but we will take it. 

Here's to being on the other side of things!

Sending so much love to all of you,

B. 

Hello October!

October brings crisp fall days, boots, pumpkin spice lattes, big sweaters, apple picking, hay rides, and thoughts of Adrienne..

This morning started off with thinking about one of the toughest, bravest warriors and her mother, Adrienne and Alison.  Adrienne survived with HL for over thirteen years, and is probably one of the primary reasons why I, and so many other warriors are alive today.  She showed us it was possible to live with this disease as a chronic illness and still achieve your life goals.  Today marks three years since Adrienne's passing, and her presence continues to impact my life and my ability to continue this lifestyle -- just as she did.  So, today we remember Adrienne and also send love to her entire family, especially her mother Alison, who has shares/d invaluable experiences and information to help other cancer patients in this journey. Today, we remember Adrienne.

Without Adrienne and Alison, I wouldn't have met with Dr. O'connor today -- the man and my oncology team that has kept me alive for almost six years with this illness.  It felt almost fitting that Dr. O, Ellen, and I of all days, were within the same four walls.

This meeting/check-up consisted of discussing these rare and intense side effects that have mostly subsided since decreasing my dose of Revlimid from 20mgs to 10mgs.  At this point on the 10mgs I am left with the following:

Revlimid side effect (10mgs)s:

• Neuropathy.  We are treating this with Cymbalta.  At this point I am completely numb in my toes, the padding of my feet, as well as the tips of my fingers.  In addition to Cymbalta I will also be researching Acupressurists in the Bucks County area.  

• Pain levels.  My body-pain/aches have definitely decreased.  Instead of being at a seven on a one through ten scale, I'm now around a three.  Unfortunately still in pain, but better than before.  Taking IBprofin everyday is taking the edge away.  In addition, I have shooting pain about 5-6 hours after taking a dose of Revlimid within my upper chest (the reason for my hospitalization last week when we thought it was a blood clot), and when I take a very deep breath.  

         O'conner's hypothesis is that this is tumor lysis syndrome, a break down of cancer cells dying that  
         can cause intense pain where the tumors are located.  If this is a correct diagnosis than the pain
         will decrease over time as the tumor cells begin to die off, since there will not be a large disease
         burden.

• Hair thinning, I'm losing very few strands a day, but still when I wash my hair, I am losing hair.  Mentally this is never a positive thing for someone who's lost their hair several times, but I'm trying not to focus on it at the moment. 

My team and I have decided I will continue on the 10 mgs of Revlimid indefinitely if I can tolerate the pain and neuropathy or they subside over time.  In addition, I scheduled a port surgery to replace my old portacatch with a new power portacath so my tender arms never have to be touched again for  imaging/scans! Although it's never fun to get surgery, I am super excited to not have to endure anymore needle sticks, hours of waiting for a nurse to access a viable vein, or the bruising that comes from missing my veins time after time.  

This new port, we will be able to use for all of my scans, blood work, and anything else that needs a vein access.  Some twenty-eight year olds get a new car and are excited, I'm off to receive a new port-a-cath, and I seriously can't wait. Other positive news to relay is that I am back up to 122 pounds.  I thank everyone who sent over or dropped off food as it obviously stuck, and I am almost back to my normal weight, all good things! 

Lastly, if you would like to financially help in anyway, you live in the Bucks County/Philadelphia area and you would like to book a family, engagement or budoir professional photo shoot, my good and dear friend, Ms. Jillian Bauer, is running a special now through December 31st.  Please check her out as part of the proceeds are a contribution towards my medical/treatment costs.  Please click here for more details. 

Here's to October, the crispness of fall, and Adrienne.

Sending Love,

B! 

One of the Lucky Ones

Life has been full of smiles as of late.  We've received notice from Texas that my second round of the EBV+ Trial with the arm for relapsed and refractory patients is ready for me!  I will be receiving the first infusion on October 12th and then my second the October 26th.  

So, a favor to any of you who are able: We are scrambling a bit financially in regards to the flights, as the infusions are coming up.  Ideally, we'd love to have my partner to go with me as I'll be flying in and out of TX in one day and the pre-meds cause a bit of whooziness.  But for now, we're looking for flights just from PHL to Houston, TX, just for me.  So although I hate to ask for any bit of charity, if you know of any charities, or anyone willing to use frequent flier miles to help out this cancer patient, let me know! If you'd like to chip in just a few dollars you can always donate to the paypal account listed on the screen. (If you would like to donate your miles in any way, on either date, for myself or my partner, please email me at: RebekahFurey@mac.com so we could possibly discuss details) We obviously would be forever in debt to anyone who could help us, and thank you in advance for just reading this small paragraph.  

But on to to the good stuff! My ESR/SED rate remains unchanged this week, it is holding in the 40's, and we are thrilled about that. My weight continues to fluctuate between 126-128lbs, I am hoping as I contiue to gain now it is due to muscle mass! :) And the last piece of wonderful news is that since the infusions in TX are ready to go, we will scan 8 weeks post the second infusion.  This means that I will receive a PET/CT scan sometime during December, which will be the longest period of time my body has ever had time off from a scan since 2006 (pretty cool if you ask me).  If I begin to have any symptoms, drop weight, or my ESR sky rockets we will move the scan date closer.  However, O'conner says there is no need for a check-up since Dr. Bollard down in TX will be seeing me, and we can follow the EBV trial protocol-schedule of scan dates.

All in all, this is wonderful, wonderful news.  I will have the entire semester off from toxic-treatment (unless anything pops up on the radar), and we are giving Texas a second go and hoping this arm of the trial will do some damage to those pesky cancer cells. In the midst of my last year of graduate school, new cancer treatments/vaccines, and just life in general I can easily say that I am honestly one of the lucky ones, and life could not be more sweet these days.  As always, I thank all of you for your comfort, support and love and I hope you're all enjoying the change of seasons and life as much as I am these days.

As always, sending each and every one of you tons and tons of love & light :)

xoxo,
B.

Celebration-Rollercoaster

Two weeks ago my lovely entourage and I (my mothers: Darlene and Diane, and my partner: Rich) took the trip to NYU for my PET/CT scan to determine if this EBV positive trial was/is working that I received down in Texas.

At the time of the scan a few hiccups occurred: 1) O'conner was out of the office  2) my veins refused to cooperate during the CT scan, and only a PET scan was given during this time.  Therefore, we were a bit unsure about the results.  When I looked over the scan there was progression, but very minimial, and we only had the PET scan to go off of for information -- never a good thing for a refractory hodger, especially since this EBV trial is known to cause inflammation due to the killer T-cells that attack my tumors.

So, for two weeks my oncologist teams (O'conner, Zain, Bollard) discussed what should be done.  Yesterday, my entourage and I met up again, with O'conner returning from his travels and all doctors giving their two cents.  I was prepared to start Revlamid, or hop back on a previous treatment (SAHA) due to the fact that there was progression; however, my team had a different thought process.

O'conner's team is one of my favorites because they always see their refractory patients in the BIG PICTURE.  They take into account how the patient is feeling, their symptoms, their blood counts, and then the numbers on the pages of scans.  In three out of four areas I was excelling beyond all expectations.  My blood counts are the highest they've been in five years. I haven't held onto weight like this since before my diagnosis, and I feel on TOP of the world these days with energy.  And when you see me in person, there is no denying that -- and O'conners team has been sitting court-side.

So, after a quick run down we all decided that the best thing to do would be to milk this oh-so-good-feeling, out for as long as humanely possible.  On top of that, we really haven't given the EBV+ vaccine the best shot in the world, and we are looking to possibly do a second infusion in the next two months (if my next round is ready down in Texas).  Therefore, the conclusion is to wait and not receive any toxic treatment.

After the news two weeks ago, I feel as though these last scans from relapse to this recent visit has been an incredible rollercoaster of the unknown.  Is there disease? Is there not? Is that inflammation? Is the treatment working? Wait, if we have progression, why aren't you treating it? Without a CT, is that really progression? There are so many questions, and a lot of people take time and energy analyzing all of it, but this is where I get to step back and let all of those questions fall by the way side.  Sometimes, we don't need all of the answers.  Sometimes, it's okay to enjoy the unknown if we feel good.  And that is what I plan to do.

If you are going to tell a Refractory Hodger that they do not need to receive treatment for 2-3 more months, THAT is a celebration, whether there are 5 questions or 500, the conclusion is the same.  We will wait, I will enjoy this time without treatment, and we celebrate in the fact that I have almost a whole semester without having to worry about treatment.  It is something to cherish.

It has taken time and experience to enjoy these periods without anxiety ridden thoughts.  As others may have anxiety over: is the disease is growing or not, or question if a day of fatigue is because of cancer or just because it is too much.  But here, in our neck of the woods you will find me and my lovely entourage basking in the glory of this 'wait and watch period' without treatment, and enjoying every single moment of these non-treatment days... for as long as we can.

From now till november we will track my ESR levels, and meet with O'conner in two more months as a check-in to reassess.  But in the mean time -- we celebrate!

Love and light to all of you my loves,

B!