Goodbye 2011, Hello 2012!

Two Thousand and eleven has been an incredible, incredible year -- and thankfully it is ending in an amazing way.  A week ago my PET/CT scan revealed stable disease, and I could NOT have asked for better results.  This concludes that the Texas Refractory Arm (EBV+ Trial) IS working! Which we are all very excited about.

At this point, I will receive the infusion once ever 6-8 weeks (this will be my decision) and then scan every 12 weeks. Which means, I will fly to Texas a lot over the next six months but it will definitely be worth it.  Speaking of Texas, I wanted to apologize for not posting this sooner AND thank the numerous donors from the first few rounds of treatment, without all of you I would not have been able to fly, pay for lodging, or eat in Texas, and I thank each of you from the bottom of my heart.

Thank you SO SO much to: Ms. Lisa Herlihy, Ms. Tywyn Daniels, Ms. Karen Regan, Ms. Judy Kilty, Teri Krieger, Ms. Carrie Witting & Mr. Andrew Lewis, Ms. Alyson Weissman, Mr. John Marco, Ms. Jenna Jezierski & Mr. Ajay Siekierski, Ms. Barbara Chambers, Ms. Katy Cooper, Mr. James OHair, Ms. Alannah DiBona, Ms. Courtney Forsberg, Ms. Linda F. Davidson, Mr. Chris Carr, Ms. Michelle McDonald, Ms. Eve Braley, Ms. Jussara Berry, Ms. Caitlyn Gable, Ms. Ruth Hendry, Ms. Tianna McCormick, Ms. Jessie Oettinger, Ms. Jessica Smarsch, Ms. Karen Tully, my uncle and my lovely brother.  For those who donated five dollars or more -- thank you, thank you, thank you!

And with that, I will once again be going down to Texas for my next infusion mid to late January, and therefore, will obviously need a bit more help.  So if you are able at all to open your hearts and donate to the 'Houston Treatment Donations' on the right side of the screen through paypal I will be forever, forever, in debt to each of you. Just click on the donate button and you're able to donate ANY amount, this can be 1 dollar, or anything more!

We are also desperately looking for ANYONE with frequent flyer miles that would be willing to donate to my flights from PHL>TX and back, so I can get to my treatment this month.  If you have any available miles and would like to donate, please, please email me at: RebekahFurey@mac.com

Again, without all of the donors, and good friends, I would never even begin to be able to receive this form of treatment -- a treatment that is actually working! So again, thank you.

Although life is good, healthy, and normal over here.  I wanted to take a moment to honor and send peace to the Reed Family who is dealing with the incredible loss of Mike Reed, a fellow refractory hedger who fought for twelve years and is one of the refractory folks community most honored, respected, and loving pioneers of the cancer community.  I encourage you, your friends and family to take a moment and send love to the Reed family, to wife April, and baby Trent.  Therefore I encourage you to stop by Mike's CaringBridge Site and send a message to April and Mike's family.

You can visit and leave them a message by clicking here.

There are never any words that justify the loss of a great man like Mike; therefore, those who are refractory continue to follow his footsteps, and those who knew Mike and his family I know will continue to treat the world and the people they love around them, just as Mike has: with grace, patience, kindness, respect and love.

Sending you love and strength Reeds, we are thinking of you constantly.

As the close of 2011 approaches, I feel grateful that I have met such souls as Mike, and so many others we have lost this year, and those who continue to live with this disease.   Although there have been some small bumps in the road these last few months, it has been a pretty wonderful year and I am thankful that I get to close off 2011 with a partner I adore, a family who continues to be supportive, friends who never leave my side, and a future worth planning.

To each and every one of you, I wish you love and a wonderful New Years Eve :) 

And so does Ms. Zooey Deshanel and Mr. Joseph Gordon...

Sending all of you the happiest of holiday wishes,

the best for this new year,

and of course, love, peace and strength to the Reed's. 

xoxo,
B.

My Decembers.

Beautiful is such a certainty,
but uncertainty is more beautiful.

-Wislawa Szymborska

December has always, always been an incredible mixed bag of emotions.  It's almost the way we see the holidays, there are so many wonderful, beautiful, amazing components to the winter holidays: the scents of ever-greens, cinnamon, cookies baking in the oven, latkes in oil, burning candles, snow.  Some of us are near family members that we cherish, others who are far away send packages and greeting cards to the ones we love.  With that said, there is also the constant stress of completing projects at work, little to no vacation time, pressure of gifts, snowy roads, sleet, ice and more.  As I said, it's a huge, messy, but wonderful mixed bag.  And that at the moment is how I see most of my Decembers since 2006.

This December will mark five whole years since my initial diagnosis of Hodgkin's Lymphoma.  

  

Although there is a huge part of me that is so grateful to still be here five years after this diagnosis, through many lines of treatments, small surgeries, traveling, clinical trials, different oncologists, and a whole realm of other obstacles and forms of adversity.  There is a larger part that accepts and acknowledges that five years of my adult life has been affected by this illness.  Since I was 22, entering the work force this is all I have known through grad school and attempting to formulate a job for myself that can be accomplished while tending to a chronic illness.  Although I see the beauty in every piece of pain I experience it is remarkable to think that five whole years have now passed with cancer continuously being in my body.  And thankfully in these moments, those who do not know me, could never even comprehend the depths of this disease that soak through my skin.

Five Decembers ago was the start of an unwaivering black cloud that began to hang over my amazing family during the holidays. In December of 2006, I was diagnosed with Lymphoma. December of 2007 was my relapse and beginning stages of transplant. December 2008 after accepting that my transplant failed and I would now be on clinical trials the rest of my life, my first attempt at third line treatment failed and the cancer was progressing. December 2009, my family and I spent part of Chanukah and the entire week around Christmas at NYU hospital since my third clinical trial had now failed, taking tons of pounds off my tiny body, which resulted in leaving Boston, a beloved grad program, my final internship and being bed-ridden till March of 2010.  Thankfully, last year was one of the first, and the best holidays seasons I had ever experienced.  The daunting black cloud lifted and I hit a small remission which enabled me to run away for the holidays to my favorite part of the world: Greece, with wonderful friends and my brother.  

However, it almost feels as though my body is conditioned to receive some negative news around this time, and somehow a scan always falls right in the midst of the holiday season, this year is no different with a PET/CT scan a day before the first night of Chanukah, and a few days before Christmas on 12/19.

To say my Decembers are a struggle would be an understatement. I am grateful, happy, and pleased of how well my recovery has been in the last two years.  I do not in the least bit take any of my days, hours, or minutes for granted.  However, when looking back it is difficult to see passed the patterns that reveal themselves over and over again.  It is obviously my hope, just as I did last year, to break this cycle and to start enjoying the holiday season.  To take in more of the smells, lights, tastes, and extra time with family and friends instead of fearing the holidays.  But it is a very large and difficult task to do so with grace and patience. 

These Decembers, a mixed bag of gratefulness, hopes and fears can be daunting.  However, these Decembers are mine and only mine to speak of and experience. Whether they were heartbreaking or heavenly, I am still here living them.  In turn, I have proven many doctors, nurses and fellows wrong when fear, uncertainty and the unknown in their faces resulted in differing prognoses and predictions of my life expectancies.  Thus, it is the unknown that gives hope not only for me to look back ten more Decembers from now and write these same words, but to look forward to this December.  Because uncertainty is so much more beautiful than finality, uncertainty gives hope, opportunity for growth, and the possibility of change.  And above all, uncertainty provides the possibility that even after five years of adversity you and I still have the ability to smell cinnamon, ever-greens and snow in our Decembers. 

 -----

I am sending love and light to all of you this holiday season, a bright December to each of you, 

and all my heart and more,

b. 

I'm still breathing.

For some reason as cancer patients, dates and specific times of the year during our illness are so incredibly important to us.  Looking back towards the day we were diagnosed, when our treatment started, when/if we hit our first remission, transplant dates.  This in turn spills into big life changes as well, when I left this job, when I started this grad school program, when I started that grad school program ;) When I moved from Florida... When I moved from Boston... When I moved back to Boston... When I moved home, to good old Doylestown Pennsylvania.

There are so many endings and beginnings in our journey and part of our moving forward process is grieving over the past, so we are allowed to enjoy the future.  This November, marks two incredibly brutal, life-changing, euphoric, challenging, progressive, loving and memorable years. Two Novembers ago at 87lbs I made the decision to leave Boston, my Grad Program, my life to come home and be cared for by the most amazing mothers in the world. I packed my bag, and left behind a life I dreamed of.  And in an instant I felt my future vanish, the rug pulled out from under me, and a life now lost.

Coming home signified that I was too sick. Too sick in fact to hardly shower, walk to the bathroom, or eat. Coming home meant treatment was not working, the disease was progressing, and an uncertainty of time, my time.  You can ask some of my best friends how deeply heartbreaking these months were for me, as they became heartbroken as well, thinking  they might need to schedule flights to come home and say their goodbyes. Their final goodbyes.

Two years, a life time ago, and a life lost somehow has been an entirely new life gained.  I can not tell you how this happened besides the caring and nurturing of friends, family, and an oncology team that never gave up on me. But, it did. Two years later and in a few short months I will be graduating from this grad program, I am not only able to walk, but run miles.  I not only shower, but I intern, celebrate life with friends, and eat, eat and eat.

We hold these dates so close to us, these months that symbolize pieces of our lives.  We tuck them away so delicately in our hearts that we know when the foliage changed two years ago, or five years ago, or ten years ago -- we remember where we were, and we stop to take in the moment now to see where we are.

As cancer patients these dates, times, months, memories are so important and vital to our identity and to our souls because they are the moments in which we changed.  They are the moments that molded us into the people we are today.  These were the moments we felt the purest pain and still begged to be here. And these are the moments that although we couldn't do much, we had to, no matter what: continue to breathe.

And for some of us,
those few lucky ones,
myself included.
We still are.

Five years ago, two years ago, and today so much has changed that I could never even justify it with  words.  But for all the change, evolution, moments and memories, one thing continues to hold true...

I'm still breathing.
(and you are too...)

And this November I can't think of anything I am more grateful for, than that.


Sending love, light and tons of good health to all of you,
Wishing you all the most wonderful Thanksgiving.
And here's to lots, and lots of breathing.

xox,
B.

Texas Infusion 2011: Complete!

I finally received the much anticipated second round of texas infusions at the end of October and it was another complete success! Unfortunately due to my lovely partner having a stomach bug and some fevers, I took to Texas on my own -- and it went down without a hitch.

This is great news for the future because I was able to fly all the way down by myself without any big complications.  Although it's always nice to have a caregiver by your side, it's even more wonderful to know that if push comes to shove I need to do this on my own again, I am able.

Once again, this trip in no way shape or form would have been possible without lots of key players.  Big, HUGE thanks to my amazing brother and uncle for providing airfare for this round! And, huge huge thanks to those who donated other amounts that were able to get me to and from the airport, to the hospital, to the hotel, and back to the airport all in one piece -- while still being able to eat foods that I wanted :) Whether you donated 5 dollars or more, each penny that I received was used.  Those who donated a few days later after Texas will be used for future infusions.

That is, we HOPE there will be future infusions.  The GOOD news from this trip is we recently tested my ESR/SED rate levels and they are going DOWN.  ESR/SED rate measures the inflammation in our bodies -- in this case, it measure my cancer.  And in the past it's been indicative of what is happening with my disease.  From May, during my relapse til September my ESR has increased 10 points within every month.  This month?  It decreased ten points.  At the rate is located at a 43.  Not bad, not bad at all.

Therefore we think this vaccine might actually be working.  The game plan is to scan mid-December, and if it works? We continue to infuse every six weeks down in Texas.  That means all of my infusions for 2011 are complete! What a way to end a year -- one whole entire year without any toxic chemotherapy.  I could not ask for anything more.

A lot of lovely, wonderful, people have asked me lately how Texas was and how things are.  October was a very, very, busy, chaotic, jam-packed month.  And I have much to update but I wanted to just send a quick note that YES, my infusions are complete! I am feeling fabulous! I have recieved all of your donations! (which I will post a thank you to all the individuals this month, because I know some of you are concerned if your payments went through). And life is busy, but amazing in all aspects of my life.

It's been amazing feeling normal, celebrating with friends over things we should be celebrating about in our twenties -- such as one of my best friend's weddings that I attended this month.  I hope you're enjoying life as much as I am, and can not thank you all enough for contributing these last few months.  You all have opened your hearts and pockets to keep me healthy and happy and smiling wide!

And here are some pictures to prove it :)

 

 

 

 Love and Light,

B!

Texas, Round One - Complete!

Round one in Texas was a complete success!  We were able to fly in and out within almost a twenty four hour period, thanks to our good friend Liz Masson who accommodated our airfare, and all of those other wonderful people who supplied us with enough money to handle the 120 dollar (yikes!) round trip cab fare from the airport to the hotel and other travel costs.

We have luckily booked one way toward Texas for our next round which is on October 26th due to my amazing brother who had an airline voucher, and are now holding out for Corporate Angels to find us a return flight.  I've received a lot of "I want to help, what do I do" kinda of emails lately.  For those who would like to help us out with our cab fare, food, hotel costs, parking, and other odds and ends, please look to your right of the screen where it has a DONATE button and above it says "Donations for Houston Treatment," click on the button, and you can donate (with a debit, credit card, or check) as low as 1 dollar, or whatever amount you wish!  Any money you decide to donate helps us along this last leg of our trip for this treatment.  And we so, so appreciate it.

I will definitely update more once the second infusion is complete, and can never thank all of you enough for your kindness.  Without all of you, this treatment, which we hope is truly working this time around! Would not be possible. I am forever grateful to all of you... and I will never be able to say it enough.

We hope you are taking in the beauty of Fall... it's been beautiful up here in Pennsylvania
And Lily and I are enjoying every minute of it!

Happy Fall my loves!

Photo Credit: Katie N. Ehrman at the Poconos

Love and Light,

B.

Treatment, Hotels, and Flights -- oh my!

In two days my amazing partner (Rich) and I will set course again for Houston, TX.  Since the relapse in May it has been decided that my cancer is not growing fast enough to throw in another toxic treatment (yay!).  Therefore, we are attempting the EBV+ vaccine again, and THIS time around I will be put on the relapse arm opposed to the remission arm in hopes that this arm will wreak more havoc on the cancer.

Attempting another treatment to Texas is exciting (another chance for this treatment to work) but a bit financially stressful.  Therefore I just wanted to thank everyone who has sent their positive vibes, opened their hearts, and have also opened their wallets for us to make this trip possible.  I am so humbled, grateful, and words can never express how appreciative I am for the kindness of so many individuals out there.

Originally we had hoped Corporate Angels which is a wonderful organization that flies cancer patients for free would be able to score us a flight.  However, they were unable to find a flight in the areas of our departure and arrivals in the days we need for treatment.  So, the wonderful and talented Ms. Liz Masson, generously offered her wonderful miles to me and Rich -- and we have our first flight booked!!

 Ms. Jola & Ms. Liz

We leave Wednesday (October 12th) for TX at dawn and leave Thursday (October 13th) at dawn so I am able to make my night shift on Thursday at my internship.  Orginially Rich and I wanted to fly in and out the same day; however, with this round of treatment and the obversvation period it is literally impossible for us to find a flight to arrive there and then late enough to leave to have all the tests, obversvation, ect, complete -- we would most likely miss our flight.

Therefore we had to make the decision to stay over Wednesday night, something we were not sure how we were financially going to be able to handle.  Luckily, some amazing and ridiculously generous people, in addition to Ms. Masson and her miles, donated money in the last two weeks and we will just have enough to stay at a hotel Wednesday, eat, and enough for cab fare.  I am so incredibly lucky for these people as they are making this trip possible.

So! Huge, huge thanks to: Ms. Judy Kilty, Ms. Alyson Weissman, Ms. Barbara Chambers, Ms. Katy Cooper, Mr. James Oheir, Ms. Alannah DiBona, Ms. Courtney Forsberg, Ms. Linda Davidson, Ms. Ruth Henry, Mr. Chris Carr, and Ms. Michelle McDonald.  Without all of you, and Ms. Masson, Rich and I would not  make this trip, nor would I receive this form of treatment.  I will be forever grateful for all of you and your hearts.

The last thing I absolutely hate to do on my blog is ask for any charity.  However, the trips to Texas this fall were very last minute as we didn't know when my cells would be ready.  With this first trip booked and ready to roll we are now attempting to figure out the second part of this treatment.  To complete this round Rich and I have to make our way down again on October 26th for the second infusion.

Therefore we are asking again: if there is ANYONE out there who has frequent flier miles that they would be willing to donate, or money towards the PayPal account for our next and final trip down to TX, we thank you in advance.  If you have left a comment on the blog that you'd like to donate (I believe there is a Cara out there who said she would like to), I am having trouble finding you! So please, email me at: RebekahFurey@mac.com to discuss any details.  Again, we thank all of you for sending positive vibes, opening your hearts, and your pockets.  My health and semi-normal life has continued because of each and every one of you.

Thank you again.
Sending Love and Light,

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!