Drink it up love, drink it up...

One of the major lessons I've learned about this disease and how it affects my every-day living is that I am incredibly sensitive with my feelings.  Meaning, when I am sad, I feel it, I taste it, I experience it. However, when I am happy, I glow. It's heartbreaking yet overwhelmingly wonderful.  And when I am in a wonderful place, I love to pay it forward, pass it on, and share it with those who have been in my corner during the lows of my life.

This sensitivity is a double edged sword, but I can tell you there are times when I am bursting at the seams with pure love and happiness. When the love and beauty I'm surrounded by are so intense in my heart -- I truly feel that I want to cry (and sometimes I do). Cry in a way, that each tear represents how appreciative, grateful, and amazing my life is at that small moment.  It is incredibly hard to articulate, but lately... I am experiencing these highs from my remission, my trip to greece, and now to the first holiday season in over four years without any disease.  At this moment, I could not ask for anything more and want my celebrations to be all of yours -- I am breathing in so much happiness, love, and support and exhaling beauty. A beauty that I hope all of you are able to experience too. To live in this moment of 'wonderful,' with me.  However short-lived it may be.

Life could not be any sweeter. So here, I want to share with you my life-changing trip to Greece. Words and even the pictures can not justify what happened in these ten days with four of my favorite people in the entire world.  A trip, when I talk about it or think of it... only creates the happiest of tears and the sweetest of smiles. And, without all of your support -- would have never happened.

These pictures are my gift to all of you this holiday season..
_______

We are never the same once we see the sun set on the other side of the world....'

From the Acropolis, to the Temples of Athena, Posidion, Heresedes, Zeus the Parthenon, the New Acropolis Museum, Hiking up mountains, Spending time in the Agora, Bath Water Tower, Delphi (foundation of the oracle, thoughts, philosophy and questions of life) Falapalos Hill, Pistachio Factories, Market Places, Plaka Square and other tavernas, The beautiful Islands, Sunsets all over, and Cape Sounion Beach. We had the time of our lives. We took over 2500 pictures, these are only from my camera -- however they are 100 of my absolute favorite moments/shots of the trip :)

Sending all of my love to all of you this holiday season,

b.

Thank you & Private Settings.

I just wanted to post and say thank you to the hundreds, literally, hundreds of e-mails, and comments from facebook, to this blog, to the Hodgkin's forum.  Some days, I have no idea how many people really come to this blog for support or information and its very humbling.

I always, hate to do this. To think that I need to privatize my settings; however, I am beginning to interview for internship positions once again and need to be able to control who sees this information or not.  I hope you decide to continue to follow.  It is a process to send out invitations to all of my readers, but it's definitely worth the support and celebration you all give to me.  If you would like to continue reading this blog please do the following:

• Email me at: RebekahFurey@mac.com

• Title it as: Private Blog
• Please, please, please, title it exactly as it says above. 
• Not, 'blog.' Not 'bekah's blog.' This will get lost in my e-mail account. I have a filter in my account to send all of your e-mails to one folder. So, pretty-please title it accordingly.

• In the e-mail: identify yourself 
• fellow cancer warrior, friend of a friend, hodgkin's forum, you just stumbled upon the blog and want to continue to read it, or if we're connected in any other way...
•  no need for lengthy details (but if you want, I LOVE hearing stories of your own inspiration, survival, and overcoming adversity!)

• You can expect an invite in February. 
• You will receive an e-mail from blogspot, asking if you'd like to follow my blog.  

If I have sent you a private invitation in the past, please do not assume that you will be able to sign in and view the blog.  Please, re-send me an e-mail.  If I do not hear from you, I will assume you do not want to be included. And that is okay too :)

I hope you all have a wonderful Thanksgiving, Holiday Season and New Year.
We obviously hope this remission will last a few months, and if not, we have good options for treatment in the Spring.

Sending all of you love,
B!

Tears and Scans

I am in sweet
sweet --
 beautiful,

Remission.

(complete remission)

for the first time in 

three years. 

B.

Me and  Max are happy campers! Go celebrate!

Rise

To those I love:

Life is not about how traumatic or painful your experiences may be, life is about how you see these moments and what you decide to do to overcome them. Pain is universal and relative. We can continue to compare ourselves to one another to see who has a more difficult time, or we can use that energy to spark the fire within each of us to move forward.  We create our own worlds with our mind and perceptions. When life hits you hard it is your choice to fall down with it or gracefully rise to the occasion. In a world where too many people allow their circumstances to control their lives, I hope you see the beauty in the ability to rise. - b.


---
Scan Results for the Bendamustine on Thursday, November 11th.

The Unwritten Code

There is an unwritten code between refractory folk of Hodgkin's Lymphoma. The few that live the lives that we do, are constantly in and out of treatment. Some of us have incredibly great, wonderful, and high months, while others, are bedridden, jumping from trial to trial as fast as possible to stop the cancer side effects and figure out which path is the best approach. And then, slowly, ever so slowly, our roles change.... those who were in high places, might dip into small depressions or too much fatigue, those who could not see a light at the end of the tunnel, are now more fully functioning. 

The refractory folk, the cool kids club, that I and many of my friends belong to -- would never wish our worst enemies to experience this life.  Because the constant unpredictability, unsettling, unbalance, and the big unknowns that occur to us and our peers are daunting. And although we realize and know we should be thankful that we have a 'chronic' cancer... this is still, hard. Especially when you are in the middle of a treatment burnout (treatments that run longer than a year), or are hitting dead ends when there isn't a new treatment out and you've relapsed, or need a new treatment as soon as possible. 

We attempt to continue our semi-normal lives, but instead of scheduling times to see movies with friends or luxary vacations. We schedule trains and planes to the best cancer facilities in the world, with the hope that they have a new, responsive, chemo, that would like to eat our cancer cells and get rid of them for a decent amount of time.  We really never know what is going to happen once we've signed up for the trial, they say there will be some side effects (but others always show their faces later down the line). And just as the doctors hand us over to our nurses for blood work, we hand our bodies, our souls, over to the oncologists who think, they might have an answer for us. 

We lose weight. We lose hair. We lose our sanity. We lose our drive. We lose our motivation. Sometimes, we even lose our fire to keep going. But the nice thing about our group is -- when some of us are up, and doing well, we can pull those other warriors who are in the trenches with their families, pull them up, and wrap them in an abundance of support. 

I've witnessed this. As it was only a few short months ago -- I did not think I could humanely particpate in any more treatment, I thought I was done. And somehow, with all the support, and the knowledge and the unwritten cool kids club code -- I saw others reach in, pick me up. Pull me towards them, and let me cry on their shoulder.  Unfortunately, and fortunately, some of the tides have turned.  Because of these brave warrior men and woman, I am standing before you, registered for four master level classes next semester, and hoping for a great scan next week. 

But that is not what the point of this post is about, it is to look at those... who need a bit more support, to look at the individuals who pushed ME, who did not give up on ME, who continued to tell me, I have more fight left... and return these amazing favors.  That is what we refractory folk do, when one is down, the others will pull them up -- as much as we can.  They would do the same (if not more) for us, for me. 

These positive thoughts and love go out to:

• Alison and Adrienne. Adrienne's Unveiling was last weekend, and I can't even imagine how painful the experience was for all of Adrienne's friends and family, and the woman (Alison) who put all of this together.  Alison is one of the strongest mother's (and woman for that matter) I know, please send her caring thoughts in the next couple months...

• Mike has experienced Hodgkin's Disease for almost 10 years now.  The last few years, he and his Mom, Sharon, have been in and out and in and out of various treatments, with Mike's low blood counts he's been unable to find a stable study that do not destroy his plateletes.  Sharon & the fam, recently decided to move Mike into Hospice care, as he is in pain and at times unaware of his surroundings. You can leave Mike and Sharron a comment on our Hodgkin's board if you wish: Click here. 

• Kirsten, who I find to be the most hilarious women I've ever encountered, is having a bit of pain trouble and lots of fatigue, she's gone straight from the Bendamustine to another chemo, and the treatment burn-out is definitely NOT fun. If you'd like to send K some encouragement, please write to her by clicking here.

• Lastly, but certainly not least, Anne is having her allo-transplant done within the next two weeks full of chemo and then she will receive her sisters stem cells.  This is a huge, huge moment for Anne, as we truly hope that the cancer is gone for GOOD after this being her second transplant.  Recovery will be difficult, but please send her some love.

There are many others having difficulty right now too, but if you have any positive thoughts, prayer, or warm thoughts, I know they would love it, if you sent them their way.... If you have something that you would like to directly send to them, through email (and can't figure out how to do it yourself). Please leave it in my comment section with who you would like to dedicate some words or thoughts to, and I will be sure to send them to any of these individuals.

Although there are many days, weeks, and months that I wish I did not have this cancer.  I am incredibly grateful and humbled to be a part of this group. They are the most empathetic, sensitive, deep, introspective, and caring group of individuals I have ever experienced. 

We're rooting for ALL of you, 

Sending love to each and every one,

xoxo 

B

I live for them.

This will be a lovely, long update, so please pull up your favorite comfy chair and some peach tea, and settle in...

Although treatment last week was a bit rougher than past treatments, numbers and weight were absolutely excellent.  After last month's weigh in at 105.7 lbs, I pumped myself up to 110.8 lbs last week. Another five pound increase was an incredible milestone, I have now officially gained 20 lbs in the last six months after my many hospitalizations last year, it finally appears I am hovering over my normal weight (115lbs), and after the next month and Thanksgiving coming up I'm hoping to find myself around 120lbs as I head off to Greece with the loves of my life in December... A PET/CT scan is set for November 11th, and treatment will continue that afternoon into November 12th. This will be round five of the bendamustine (I will only receive six cycles in total).  My ESR/SED rates/values have been below 15 for the last two months -- this in itself is a triumph.  We obviously hope that it continues to stay at a normal rate, especially once treatment ends in December.

My energy has also been at an all time high, with hitting the road almost every weekend to visit friends and family in different states.  Midterms are complete in my classes, and it's pretty smooth sailing for the rest of the semester until Finals set in again. Although I am incredibly grateful for being able to take classes this semester, its amazing to me how I crave more challenge, more discussion, more richness from this program.  There are many nights I head home after class, missing, desperately my Lesley Education in Boston and the connections I've made... however, I'm thankful for this second chance at my Master's and know once I'm back in the field interning this coming year, another piece of my puzzle will be filled.

Aside from having a wonderful oncology team, supportive family (who I get to see SO MUCH more often now that I am living in PA, that makes me smile). I am also ridiculously thankful for every person who has donated to the 'Rebekah Fund.' No one realizes how expensive New York becomes during treatments, since we have to buy food there (and are trying to plump me up), as well as garages to store our cars, gas, and other expenses. Honestly, without all of the donations (especially from my Uncle Jay's work -- designed by JANE in a Bekah Bouquet).  I'm not sure how we would have swung it this month.  I thank those who have donated five dollars, I thank those who have donated more, you have no idea how fortunate I feel... to have all of you, and your kindness connected to me in some way. I truly, truly appreciate it.

With all of these amazing pieces of my life, the stability of treatment, and finally being able to spend quality time on campus, and with my beautiful family and friends -- most would attempt to ignore the other underlying meanings of this month.  But, what I've learned most from this disease is, that even though I may have some short-lived happiness, there are others, still struggling... there are others I love and adore that these weeks and months should not be ignored.

I find it's easy to turn a blind eye, when things are going so well for you personally.  But, without some of the people who have touched my life in the past, I would be nothing and no where I am now, without them.

October is a ridiculously difficult month in my heart. Two years ago, I lost my dear friend Scott, who I still think of every day to this ugly disease, and a year ago... many of us lost Adrienne. Though the leaves and foliage are bright and vibrant, and smiles, pumpkins, and coffee's are shared, there are few moments in which I don't think of these two during these weeks.  My heart continues to break for both families, and as Adrienne's Unveiling is this weekend,  I can't help but wish all of this -- for Scott, for Alison, for Adrienne, and for those of us who are still fighting, that this... is all a bad dream.

Now that I've entered into a new program, I am asked difficult questions (since I don't have a full head of hair yet), you can tell I've been or am going through treatment.  An older women in one of my classes continues to ask me how I do this, how I keep going, knowing that there will never be an end to treatment, why would I want to live this life?

With a deep sigh, I wish I could describe the privilege I feel that I am still here, that there should actually be others, many of us (Sarah, Eric, Jessica, Pat, Shannon, Jake), that should still be here as well.  That although I have had a whirlwind of good news, and beautiful people who surround me, I still feel it. I feel the difficulty of this disease, the rawness and vulnerability of tireless treatments, the damage and brokenness that one can feel.

Why would I want to live this life?  Because with as much pain that I allow myself to feel from others and my own disease, I have a chance (for some reason or another) to still be here.  Living.  However and in whatever way I can. And I keep going because I know they would for me. I know Scott, I know Adrienne, I know Sarah, I know they would all feel the pain, as much as I do, and have it motivate them.    For the last four years, I have woken up many mornings with the knowledge that this cancer will grow in me for many years, and I have to be okay with it... I attempt to suck as much marrow out of my life as humanely possible, and I know that when I really really live out my days, I live it for them.  I live it for those who can no longer be here.

So, I ask you, while you hug the ones you love this October, live for the ones that are no longer with us.

'She who has a why to live, can bear with almost any how...' -- Nietzche

Please send love and support to Alison, Adrienne's mother.
Wrap her in your strength and warm thoughts please.

- B

Who feels amazing?

this one!

Happy Fall, lovelies! 

xoxox,

B

No news, is excellent news.

After a Thursday-Friday treatment last week, I was able to recover and jump back into life on Monday afternoon. I've never recovered this fast from a chemotherapy before. Things are good. 

My weigh-in was also a celebration in itself. Last month's weigh in was 100.5 lbs. September's weigh-in was 105.7 lbs.  Five pounds in one month? Amazing. In addition, my SED/ESR levels dropped from 130 (in July) to 15 last week.  For the first time in a really long time, it's nice to be boring. I'm eating it up.

Due to some amazing family and friends in the next three months I will be hopping in cars, planes, and trains to....

California
good old Hartford, CT
Dirty Jerz!
and Athens, Greece.

Scan on November 10th, Dr. O is hoping for a small remission, which would mean a month or two off of treatments. He might just be right this time...

xoxo
B!

l'arte d'arrangiarsi...

So much has changed and transformed within a month, that I, myself, can't even believe it.  I will update more, when I catch my breath from my weekend getaways, and school but for now here is a quick recap of the last month:

• I was accepted into school, as a transfer student and started classes last week. I am loving being back!
• Finally found a yoga studio that fits my personality, and my body is thanking me everyday. 
• The Bendamustine-chemotherapy has been extended to only once a month. I am in heaven. I haven't gone this long without seeing medical personal since summer of '09. 
• There haven't been any night sweats, fevers, or any other symptoms since my first dose of this chemo. How amazing is that?
• I finally set up a PayPal account to the 'Rebekah Fund' which is over on the side bar. I despise asking for money, but if you would like to help me and my family in ANY way, we'd be so ridiculously grateful for your donation to my medical travel and accomodations. 
• I was able to visit New England two weekends ago, and catch up with amazing friends.  Had the energy to drive up on a Friday night, come back sunday, and then go on to do a full week of classes -- I haven't felt this amazing in a year. 
• I have definitely gained weight, and can't wait to see what my weigh-in will be, come September 16th, when I have my next treatment. I'm hoping to at least hit 105 lbs, since my 100.5 lb weigh-in, in August.  
• Three of my dearest friends, my brother, and I are planning a trip to Greece over my winter vacation to celebrate, ME, surviving four years with cancer. I wonder what we'll do for my fifth anniversary? :) 
• After losing my hair to the SGN-35, my baby hairs are finally sprouting! 
• I am back to being Bekah, for the time-being. It's so nice to finally see myself again...
• I am sucking the marrow out of life, and am grateful for every single second of it. 

Sending love to each and every one of you,

xoxo

B!