True Beauty, Never Hurries

Check-in, Texas Style!

2012-01-24T11:16:00.002-05:00

Just wanted to write a quick note that the January treatment round is finally complete, and we are finally home from our travels. I have many, many thanks to give from those who donated frequent flyer miles, to a hotel time-share, to paypal account for our pecan pie fund, and so much else! My family, my partner, and I were overwhelmed at the amount of outreach and generosity and we sincerely could never thank you all enough. Since, I am still catching my breath from receiving treatment yesterday morning, and flying out last night, I will be posting a LARGE thank you response in the next few days of those who were involved with making this treatment round happen.

For now, just know, we enjoyed 24 hours (and possibly 8 of those hours) outside in the warm weather, with great food, good company and a quick treatment.

Just wanted to let you all know though, we are home, safe and sound! And can never thank you all enough for sending me to Texas to receive this treatment. Here's to a zero-side effect treatment, friends around the world, the best BBQ in the country, great pecan pie, health and normalcy!

Sending light and love to all of you,

Destination: Texas, Frequent Flyer Miles needed!

2012-01-04T00:34:00.014-05:00

Twenty twelve is starting out with a BANG. The Texas EBV+ positive vaccine is working and we are set to begin to make dates for flights! Therefore my partner and I are desperate to attempt to fly both of us down this round since I will be flying out of Houston the same day as my infusion, and probably won't be feeling too well. Dr. Bollard has decided that I will receive these infusions every six weeks until the cancer begins to progress... we're hoping I will be able to stay this for a long time coming, since this vaccine does not cause ANY side effects nor is there any toxicity levels: the truth is, I haven't felt this good since I was twenty-two, it's so amazing to finally have my life back :)

Anyway! Back on topic -- Due to my lovely internship schedule, I will have to fly down on a Sunday in January, infuse on a Monday morning, and fly back Monday afternoon/evening, just in time to intern on Tuesday morning. The second round will be held in March, and the third round in April. Thus, having Rich with me on that Monday would be crucial if we are able to find flights for both of us. But if not, I have traveled down to TX alone, and can surely do it again!

In turn, we are desperately asking anyone who is out there if they would be willing to donate their frequent flyer miles to my cause. We are looking to fly from Philadelphia airport to Houston, TX and flying back from Houston, TX to Philadelphia. If you are able to donate, please email me at: RebekahFurey@mac.com. In turn, we are so, so deeply appreciative of all of your generosity and kindness in even thinking of helping me through this cancer journey and on to a treatment that is working...

If you would like to help, but do not have frequent flyer miles, we are also in need of money for food, lodging, and transportation while we are in Texas over the next six months -- please feel free to click on the 'Donate' button to the right of your screen under 'Houston Treatment Donations.' -- every penny helps us on these trips, and even a 3-5 dollar donation makes a difference -- Rich will tell you this, because if we have enough money, we splurge on buying a piece of the most heavenly pecan pie we've ever tasted at Goode's BBQ down in the heart of Houston :)

Luckily, after this sudden trip we will have the future dates of infusions, months in advance and therefore affording and scheduling flights will be a bit easier than this month, and the last two infusions.

I can't even begin to thank those that have made contributions and donations for food and lodging, for this round, I will always be forever in debt to each of you for making this treatment possible. Thank you, Thank you, Thank you...

Again, I am forever grateful to each of you for your emotional support all these years, but now, on top of that, so many of you have taken the time and energy to write, donate, and support me through this trial in Texas and I honestly could never thank you all enough.

Love and Light my loves!
And Happiest of Twenty-Twelve to all of you!

B.

Goodbye 2011, Hello 2012!

2011-12-29T22:24:00.013-05:00

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.

2011-12-03T17:34:00.015-05:00

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.

2011-11-16T20:50:00.005-05:00

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!

2011-11-06T23:47:00.002-05:00

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!

2011-10-19T12:22:00.004-04:00

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!

2011-10-10T13:18:00.003-04:00

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,

One of the Lucky Ones

2011-09-21T18:10:00.005-04:00

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

2011-09-02T11:17:00.000-04:00

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!

And so it goes...

2011-08-19T13:04:00.001-04:00

...life is easier on me, most of the time.

As always, I so appreciate the positive vibes and energy you all send my way during scan time. I completely believe in those healing vibes and since I'm feeling so wonderful physically, I know that my body IS in fact receiving them.

Although my blood counts, weight, and body show zero signs of symptoms or cancer related issues -- the scan did not show what we had hoped. There is definite progression of nodes, a few new nodes, ranging from 1-3cm's and SUV's between 7-9. Nothing to be too worried about, but nothing to celebrate either.

Our next steps are to have Dr. O, Dr. Zain (NYC) and Dr. Bollard (Houston) discuss if this is too much progession to attempt a different arm of the EBV+ vaccine down in Texas. We won't know for sure what the next steps will be for another week; however, we have a plan A, B and C as always.

Although I'm back in the ring, I have all the confidence in the world through my oncology teams, my family, my partner and I that this will only be another small bump in the road and life will continue on to be semi-normal as I approach my last year of Grad School, and finish off my long awaited internships.

Will update when I have more information and a plan is in place.
Sending all of you love and light, as always.
And remember to hug the ones you love today, and everyday.

xoxo,
B!

Inside the mind

2011-08-13T18:40:00.008-04:00

If you sat down with one hundred cancer patients I can garentee you they would all agree with a similar emotion when it comes to the days approaching a PET/CT scan...

we feel crazy.

In truth, the days or sometimes even weeks before scan time can create the most anxiety-ridden, insane thought process of even the most logical and rational individuals out there. Although I find myself fairly well-balanced emotionally, I am no different from those who jump off the deep end and belly flop into the insanity pool, sometimes even taking observers with me.

Whether you live in three month incremental scans, as I do, or once a year the emotions and turmoil that occur inside the mind of a cancer patient can be difficult to understand. A reason, I felt the need to write this post. Although I can not speak on behalf of all cancer patients, I can tell you that the days before and after a scan are my most unstable and inconsistent in my mind, soul, and identity. In turn, these are the things that happen:

1) Thinkers (such as myself) tend to over-analyze during these days. I find myself not only thinking of what the scan may reveal but how A) my family will react, B) my partner will react C) my friends will react and D) how my school/work enviornment will react. I take it a step further but think of the outcomes -- if it is a good scan: how will I feel (where major survivors guilt comes into play) if it is a poor scan: what are my options? I think about the latest research, what friend of mine is on what trial and is it available on the east coast, where I will fit in different treatments, and what toxicity level am I willing to endure this time around. I also contemplate: how should I spin this story so everyone will feel okay with my results and be confident that I will be fine? Without even knowing the results my brain will go into a tail spin and all confidence of a semi-normal life and a future appears it can be ripped away with in an instant, and the stable rug I have been standing on the last six months will be taken out from under me. It is mentally exhausting and emotionally draining and it's hard. But these are things that I need to think about to prepare for what is to come.

2) Putting up walls. During the week before and after scans I tend to emotionally isolate myself (and others) for protection. For many reasons. Reasons due to not wanting to answer how I feel or what I think the scan will be -- because especially during this week, I have no clue. Questions regarding what my next steps will be (because without knowing how big or small the cancer is, I can't tell you yet). Protection from normalcy. During scan time is the week before or after that I truly recognize I am not a normal twenty-seven year old, when placed in a normal scene at a bar, party, or even just having coffee with friends I compare -- and it is awful. I think of how different my life is and although I attempt with all my might not to throw a small pity party, I recognize that here I am after five years of treatment, mentally hoping that I do not have to receive more toxic chemo. Because, although I can accept this life and live it well, and although it all makes me stronger, it would be nice not to have toxic drugs flow through my veins for the rest of my life. Therefore, walls go up.

In addition, I try to pull myself away from social situations and want to reflect and probably become a bit too introspective. Promised phone calls and social dates are usually canceled last minute with lots of apologies later, and I tend to crawl into my safe shell for a matter of days. But, those that come near me, or push too hard emotionally the week before or after (which are usually the ones I care for the most) are the ones that tend to crack this shell and watch frustration, sadness or disappointment pour out of me. I attempt to keep these walls up for a reason, I am vulnerable, I am a bit crazy, and still waters run very deep during this time. To be pushed or prodded, even if it is something unrelated to cancer can result in destruction. With most individuals, we tend to act out or (unintentionally) hurt those we love the most because we feel safe with them. We can yell, scream, and lash out because we know they are loyal, loving, family and friends that get it. But, it still does not make it better, easier, or acceptable. I am well-known for these moments during close proximity to my scans, and I always feel terrible at the end of these two or three weeks when all is said and done, so therefore, walls are needed. No matter how much friends and family say 'it is okay... to break down, or let go...' it is never easy, and along with the emotional drain from my own experiences I tend to feel guilty for expresssing myself in an inappropriate way afterward. Unfortunately, it is not healthy for either party -- but sometimes, you do what you have to do to get through, you do the best you can do and sometimes that has to be enough. I am lucky that those around me understand this dynamic, and hope if you are a caregiver you understand that sometimes this is how cancer warriors tend to think, this is how we survive.

3) Lastly and most importantly is that vulnerability is a huge component during scan-time. During these days of introspection the things I think about the most are my relationships. I carefully go through mental photographs in my mind of my best friends, my partner, my past relationships, family and how much I care for each of them. I find myself during these days thinking of specific people who are close to me that I could not imagine living without, in the car driving, or cooking, and all of a sudden as if a small emotional button was softly pushed tears of love will come pouring out. I find myself listening to a certain song on a long drive and thinking about an individual: have I told them I love them this week? What could I send them in the mail? I wish I could show them how much I deeply and truly care for them without them thinking "There goes Bekah again... being deep again... " Scan time is a horrible mix of vulnerability and protection, thoughts of what more I can do in my relationships and friendships circulate, and just like a carousel I end up going around, jumping from one person to another in my mind hoping they know how much they mean to me, and how grateful I am to have them in my life, and how amazing I think they are as an individual. And, at the end of most days I am so overwhelmed not only by my thoughts but the knowledge that I am surrounded by so much love that I always think: how the hell did I get so lucky?

[Annual Furey-Cousin Beach Photo]

Because I am -- so incredibly lucky for those who choose to be in my life.

As you can see all of these conflicting, raw, and vulnerable thoughts can continue on for days or even weeks at a time depending on who you speak to. I am fortunate that I have narrowed these moments down to a week before and after my scans; but, none of this is easy. I would never wish anyone to understand these days -- because to do that you would have to experience cancer yourself; however, I hope these words at least offer some guidance and insight inside the mind of other warriors and myself.

In turn, it is during these days (leading up to my scan this Thursday the 18th) that I want to thank those who support, comfort, and allow me to be crazy, knowing that I will resurface to normalcy soon. It is because of these individuals who see my tears of pain that coincidentally also cause tears of gratitude during my long drives on summer afternoons in the days leading up to that inevitable scan.

Love and Light,
B.

Life-force

2011-08-04T19:22:00.004-04:00

I began this summer semester in a remission, with one of my courses being Bereavement Counseling. I am conditioned and familiar with clients who are alive, understanding and trying to comprehend the complexity and dynamics these individuals have with remaining, alive, family members, friends, and peers. However, I wanted to delve deeper into the souls of survivors of lost ones. I also, selfishly, knew this was a course I needed for myself. I was ready to approach death (while being in remission), and as I see more of my friends pass away, I wanted to understand from every single lens how to make this better, easier, for the survivors of people who've passed.

But the cold hard truth is -- nothing makes death, or loss, easier or better. I could write you pages upon pages of how grateful we all are about life, and every beautiful individual that I have lost, or others have seen pass, but loss is loss. It is hard, painful, heartbreaking, and unjust for most in the cancer world. And to put it bluntly, I hate it. Every single warrior that passes, chips away a part of my soul and creates a huge hole for those family members missing that innocent warrior who has fought tooth and nail for their life.

But what I can also tell you? The individuals who have passed that I've experienced are more graceful, beautiful, and stunning than you or I could ever be. There are days, when I think about Anne (who passed a way a little over a month ago) or Kirsten, Adrienne and Eric who in their moments of accepting death were still able to shine such a bright light onto others lives. They, in my mind were a culmination of a life force: a beautiful mess of calm, peace, and loss.

Anne

In the last month, the Refractory Hodgkin's community has lost Anne, and as of very recent, Andy. I have words, lots of words, but nothing I write in these circumstances ever seems to justify how I feel, or the pain that streams through the bodies of those living with a missing piece of their heart day in and day out. So I wanted to share something with you to at least give pause to these two magnificent individuals

Kimberly, Calvin, Andy, Oliva

About two months or so before Anne passed away I sent her my favorite book Meditations from the Mat. The book encompasses daily reflections of life, meditations, the path of Yoga and Life. Yet again, as days, life, and beautiful individuals pass by, I come to these thoughts that I shared with Anne during her last months. The emails after our book exchange breathed life into me more during those weeks than at any other time this year, and in these moments I told her, she was in fact the light of the world. Knowing that she and others who have passed encompass(ed) this passage each day they were here, and continue to do so through their energy and through their families. It is all about choice, and how we day after day choose to react to what is in front of us. Something, those we've lost have accomplished with the most grace I've ever seen and continue to see...

My favorite part of these time worn pages is that I write down an individuals name that reminds me of the concept, theory, voice, or energy of that passage. And this is where, when you turn the pages to Day 271, you will see Anne in big, bold letters.

Day 271

"Each one of us is merely a small instrument. When you look at the inner workings of electrical things, often you see small and big wires, new and old, cheap and expensive, lined up. Until the current passes through them, there will be no light. That wire is you and me. The current is a higher energy. We have the power to let the current pass through us, use us, produce the light of the world. Or we can refuse to be used and allow darkness to spread" - Mother Teresa

Walking along a beach, I watched hundreds of little crabs digging tunnels into the sand. Each crab tunnel was the equivalent of my digging a tunnel twenty feet deep with my bare hands in thirty or forty seconds. This commonplace miracle was possible because it was necessary. If crabs are going to get by in this world, they are going to have to possess that much strength, that much life-force -- and so they have it. Life force is like that -- ubiquitous and inexhaustible. Nothing is impossible for those who have it. The root of the word pranayama is prana, or life force. What we call a miracle is often imply the presence of a little extra prana.

Prana does not differentiate between good and bad; we do. Prana simply is. It infuses the mouse with the ability to run, and it infuses the hawk with the ability to fly swiftly. It is up to each of us to make proper use of the prana available to us. Most of us have been unconsciously minimizing the amount of prana we channel into our lives because we are afraid of what we might do with all that life force if we had it. This is why surrendering to goodness is so important. Once we surrender, we can get on with the business of being magnificent, trusting that we will be guided by a higher power along the way. As we practice pranayama, we are learning to open up our energy channels. We're saying we are ready to be the 'light of the world.'

To Anne, and her amazing, joyous family, I continue to send you all love, and think of Anne every single day that goes by. To Andy, Kimberly, Calvin, and Olivia, I send you strength, comfort, and love during these difficult days.

We all, the HL community, and others hold Anne and Andy in our hearts.
To these families, and you, today I wish you a little extra Prana in your days and days to follow.

Love and Light,
B.

Shedding of Skin

2011-07-28T21:10:00.001-04:00

Post inspired by the following:

When you are caught in the cross fire of a chronic or terminal illness you are challenged by various relationship obstacles from family members, to best friends, old loves, and new partnerships. If you are surviving through a shorter term treatment of a year or two, I believe, as many should most hold everyone as close to their heart as possible, as we watch a few too many walk into the distance, mouthing the words "I can't do this," as we see their silhouette disappear.

Loss in general is a major theme in the world of the ill. And when you are like me, someone who has dealt with a deep-rooted family-loss at a young age, a loss of a parent and that parent's role. It almost feels as if every single loss in our lives is a bit more devastating than it should be. And as you (or I have been) reminiscing over past relationships, ones that have left you or that you have chosen to leave, you realize this is a central part of life. Things end. Love, friendship, occupations, life...

However, what I see most cancer patients do? And I realize only now, that I am guilty of as well. Is that we fear loss so much between our own mortality, loss of our future (jobs, loves, and life), that we tend to hold on to those in our lives who have decided to be present, but alas, might not be the most healthiest of people to surround ourselves with. We hold everyone close because we know so many walk away during the darker days. We hold the ones that put in just a tid-bit of energy, or because they have an important title, or because "we should, they stuck around for a, b, and c...'' We have these running excuses, we have reasons, and we keep them close -- even if these individuals hurt us, pull negative energy towards us, or take advantage of us in some way. We hold them close, because a small part of us see that they have not walked the other way because of the cancer.

My question over this last year however has been: Should we? Should we keep individuals close to us that have not overtly walked away that haven't directly and maliciously hurt us; however, they may not add the most positive energy to our lives? Should we keep individuals in our circle of family and friends because we "should," and that it is "the right thing to do?" Should we let them fall by the wayside?

This has been a very personal question in my own heart, and an internal conflict that has been battling a bit within my soul for the pure reason that: I fear loss, as most of us do. Sometimes as cancer patients we believe that we don't deserve the best, that by some unfair means because we are sick we should settle or appreciate anyone who gives us recognition or support, that we should 'take it,' in some way, because we have experienced so many people running for the hills in the opposite direction. But to me, settling, accepting an unbalanced, unfair, or just unnurturing relationship is not good enough anymore. We, the sick, are not any less because we have a disease growing within us. And therefore, we deserve as much as the next person (if not more!)

It has taken a lot of time, thought, and acceptance within my heart to get to this point. But I do believe, loss, is imperative on this path. And not just the kind of loss that other people choose, loss that we control as well. We are allowed to step away, we are allowed to make room for new people, friends, connections, love, and relationships... we deserve to do this for ourselves, because we still bleed the same blood as the next man or woman next to us.

And in the end, as much as it pains us or provokes guilt from our honest hearts. We not only deserve to shed those in our lives who have negative impacts, but we must. I realized now, as I begin to leave negative energy behind...new, bright, and lively positive energy surfaces in my life. So, we must. We must shed anything and anyone who causes pain within us. If we don't there will not be enough room for the ones we truly deserve.

If we don't there will not be room enough for the ones that truly deserve us.

Check, Check & Double Check.

2011-07-19T13:16:00.003-04:00

Houston infusions/EBV positive vaccine: Check
Last summer class this week: Check
Freckles!: Check :)
Sun kissed in all the right spots, and enjoying Kayaking, Hiking and Beaching this summer: Check
Enjoying life before the dreaded scan on August 18th to see what is happening inside my body: Check

Lots of smiles: double check!

Most likely I will come in and update a bit before PET/CT scan date from all the travels that happened over the last month, as well as the loss of our beloved Anne, and other fellow refractory kids that need our support. Although things have been a bit shaky with the Texas Trial, I've been sending out about 15 tubes of blood down to TX since the infusions for them to track markers, and considering -- I'm still feeling pretty damn good :) Luckily, I'll only have to do this for a few more weeks.

For now, I'm off to finish my final paper of the summer semester -- and then bask in the glory of 'summer' until I begin interning in Mid-August.

Happy Summer :)

B!

And just like dust, I rise.

2011-06-08T14:35:00.000-04:00

There have been various reactions to the recent news of relapse, and I just wanted to write a bit before I head down to Texas to receive my EBV + Vaccine through Baylor College of Medicine in Houston.

(EBV+ Vaccine: on ClinicalTrials.gov: click here)

To be honest, after returning from friends in CT after Memorial Day weekend, I was in a definite 'funk' from receiving the news, letting it set in, and digesting it. I don't want any other cancer warrior to think I am bubbly and optimistic twenty four seven even after receiving such disappointing news. There is a huge difference between being 'happy' and being 'grateful.' The gratefulness piece is always in me. Always. However, it was tough to get out of bed the last few days and to look at the bright side of things when the reality that more treatment (if this vaccine doesn't do the job) will continue in the future. I think it's important for those that are ill or receive hard news, that we are still gentle with ourselves. In the beginning I used to repress these feelings and ignore them, realizing they would only come out later to bite me in the butt. Now, if I feel down for a few days, I let myself. Usually after a week or two, I find myself back on my feet again and moving. I am no superwoman -- none of us are, so I believe its truly important to let yourself 'be' in these types of situations.

Next, there have been a lot -- and I mean A LOT of people who are deeply disappointed and upset. I do appreciate all of your words of support, emails, comments, phone calls and texts. I still believe one of the main reasons I am still here is my network of close-knit family and friends and even strangers that shower me with kindess and love every opportunity that I'm in need. But I want to assure you, that there are a lot of things we should be grateful for after receiving this news.

So, beings another grateful list for you to view :)

I feel incredible. Emotionally, this is a huge hit. But physically, I have NEVER in the last five years felt that I have so much energy, muscle, weight, and amazing health other than the cancer. Everything else in my body is working like clock work, my counts are great -- basically normal, and this is something to be thankful for in all realms because if I need to face another four years of treatment or more again, I feel ready, physically.

I have not received any treatment since November. Although I am heading down to Texas, this form of treatment is a vaccine, I am receiving back my own blood with a vaccine in it. This is not chemotherapy, radiation, or anything toxic. Most likely, since my next scan will be in September, I will not receive any further toxic treatment till October or even November. This means I have just gone through one solid year without any form of treatment, a milestone if you asked me last year I never thought I would be able to accomplish or experience. Having a solid year of 'nothing,' has strengthened my endurance, stamina, drive, body, and mind. I am grateful for this year. I am grateful for the break I had, as more clinical trials have opened as well.

I have accomplished more in these last six months, then I'd say most would have :) I traveled with my three dear friends and brother to the most gorgeous place in the world -- Greece! And had the time of my life, I overloaded last semester and finished all of my coursework for this degree, transferred all of my classes and finished up incompletes from Lesley U, and now... once August hits, will just be able to focus on my clinical hours. I have found a best friend in a man who is ridiculously supportive of me, this illness, and my family. And I cherish every day I get to spend with him. I have traveled more to visit friends than ever before these last few months, and am enjoy my first summer without chemotherapy since I was twenty one :) I have formed new friendships at my new University and re-nurtured and reunited with old ones in Boston.

I have very, very small disease. And this trial in Texas has shown wonderful, if not the best results I've seen in a trial that I've participated in so far. We are hopeful. We are hopeful. I am still, very hopeful.

The remission. I achieved a remission: something none of us thought was possible. Knowing that it can and did happen makes room for this possibility in the future with the right combination of drugs. Remember: This disease is manageable. Warriors such as Adrienne, Zach, and Mike have done/did it for more than ten years. I'm barely coming up on five :)

I look and FEEL healthy!

In all other areas of my life, things are going swimmingly. So for now. We focus on these positive factors. We, I am grateful for all of these things (especially this good-looking, brain-ack family of my mine!)

In other news, I wanted to shift the focus to those in the trenches at the moment. As they definitely need more of your positive waves of support and love than I do.

Anne, it seems is facing her last two-three weeks of life. She has gracefully touched all of us in a way of speaking of death and dying that no one in my life has. Her acceptance, and even her wit has survived despite her body deteriorating over the last few months. Please keep her family in your thoughts.
Andy, has ventured into Hospice. And with (mother) Kim and their two kids balancing their lives, and this illness, I can not even imagine how difficult things must be for them during these summer months. Please send love to the Keely's.
Mike, just as I have relapsed after Treanda (Bendamustine) has found out that his cancer has returned as well. Mike and April now need to make difficult treatment decisions that compromises different aspects of Mike's quality of life and body. These choices are never easy, please send them waves of comfort as they make these difficult decisions for their entire family.
Karin is gearing up (after four attempts) into her allo transplant in NYC. Karin and Craig have been awaiting this day for many months, we cheer and send large waves of hope and optimism that this form of treatment is successful! And that this couple survives a summer in the city!

I send my love to all of you struggling, fighting, overcoming, in the trenches, surviving, pursuing life or treatment, and know I think of all of you, very often -- and lots that are not listed here. Please remember to hug the ones you love, very tightly today. And to attempt to see the gratefulness in your life, your loves, and yourself.

I leave for Texas June 17th, receive my first infusion on the 18th.
My second infusion will be July 1st. We scan eight-weeks, post second infusion (Mid-August).

Love & Light,
B.

Relapse.

2011-05-30T15:42:00.001-04:00

I write this with bittersweet tears, as I know all of you have cheered with me these last six months that I've held a remission. I received a Pet/CT for a six-month post remission scan on Thursday, and the news revealed shows two new nodes of 2cm with a SUV of 10-13. My disease is one sneaky sucker, and most of us were a bit shocked with this news: the caner is officially back, and relapse has occurred.

I have gained all my weight (and continue) and am at 135 (over my normal weight) no symptoms, nothing. Normally I am very in-tune with my results. However, with the disease very small and not spreading like wild-fire it might just be because its just beginning to grow back again.

My team, family, my partner and I were a bit caught off guard as I walked into that scan overly confident that my remission held. I haven't felt this good in years; however, I also haven't been so happy in my professional or personal life as I am now so that could contribute to this.

But all of this, every moment of it is bittersweet. Am I upset that this relapsed occurred? Absolutely. There were snapshots and flashes of the future that were in my head since the first words of remission -- and not that all of those are now thrown out the window. They're more or less put on a bit of pause, or viewed with caution. The bittersweetness is surrounding my entire family, loved ones, and friends. We are absolutely extatic that I acheived remission for six entire months. This: A) Gives us hope for the future B) Allowed me to gain my weight, strength (both mental and physical) back to where I was years ago. and C) Gave us six months of non-cancer festivities, such as me beginning an amazing relationship with a ridiculously supportive man, my brother and sisters graduations from college, finishing up all of my grad school course work, and just life in general. I have sucked the most marrow I could out of every day, and I don't regret anything from it.

So now -- this is me, signing back on -- we are back. (Feels like I'm signing back on to a radio/tv show, :) ). Another aspect of this relapse is the fact that my partner, came with me to receive this news -- with both of us preparing for another three months of remission. With the sudden hit, (and him with zero experience in the cancer world), he supported me beyond my expectations, communicating with my family and friends after the news, talking to my doctors, fetching food, drinks, and anything I needed, and then pushing me to go to CT for the holiday weekend to visit all of my college friends, as planned. With a confirming "we are now in this together," I couldn't (oddly enough) have asked for a better response or relapse now that this has occurred.

On top of speaking of a 'good time to relapse' Whether I was in remission or not, I was set to receive my EBV+ trial vaccine on June 17th and July 1st (that Marsha has been in! and others are not moving towards), in Houston. The timing could not be better, as we had this set up and nothing in my treatment plan has changed. So life, continues to be normal, and I continue to build my strength so I can battle it out when/if those heavy chemo's must reenter my life again.

Truth be told, I am shaken, and disappointed. I had visions of moving further away from home when I graduate next spring, visions of someday being a mom again (since my menstrual cycle is temporarily back) and visions of a healthy life again... however, I am extremely, extremely grateful and feel privildged to have had these six months as I know so many other refractory kids never have that opportunity -- it does not go unnoticed that so many of us go for years and years on treatment with hardly any break. Or those, such as Anne or Andy (who are now on hospice), or Chris and Zach (who have just recently changed their treatment again) are out there in the trenches every day. I see them, I see all of us, no matter what, and I hope it does not come off in this post that I am kevetching ;) in any way. I am grateful, for these moments. And I wish for all of us (in this refractory group) that they existed more frequently.

For now we focus on: me feeling physically well, and many options for the future...

I will definitely be updating information and anything else I can to contribute to Houston trial for those who would like more information, as it is definitely another avenue/option that many people who are positive are going towards, and many of Dr. O's patients are starting to be tested for as well.

Love & Light,
B.

Catch me if you can...

2011-05-17T16:13:00.012-04:00

As the spring semester wrapped up, my family and I were able to celebrate my little brother's graduation: all with good health, and amazing smiles. This is just a taste of my upcoming, traveling, summer. In the next month, I will be in several different states. So, catch me if you can... more pictures, soon :)

This coming weekend: Boston!

Next week: NYC, Ian Axel Concert + (6 month) PET/CT scan at NYU

Memorial Day Weekend: CT for a college reunion and to celebrate Max's first birthday!

June 17th: Houston/EBV Trial

June 25th: Dispatch Concert in Boston, then flying out to Chicago for a wedding.

July 1st: Houston/EBV Trial

Phew. My head is spinning just thinking about all of this. But, I can't wait for every second of it :) Also a huge, huge, HUGE thank you and ridiculous love and gratefulness this month go to my Uncle Jay, Aunt Bob, Thel and Wendy and Alison for financial help in transportation. I can never thank you all enough for your help.

So! Catching up on life is my overall goal this summer: and Jake's graduation started it off just right!

Remember to hug the ones you love today,

as thoughts, prayers and strength go out to my fellow refractory kids: Andy and Anne

who are both in hospice care at the moment.

Love and light to all of you,

Hearts are breaking around the world for Anne

2011-04-19T18:00:00.001-04:00

Hearts are breaking around the world for Anne and her family...

What can I tell you about one of the most striking, gorgeous, vivacious women I know? That she not only tells the world how it is, but shifts her mind with whatever comes her way of acceptance and peace. That when I've given her my opinion which most people just say 'Of course Bekah, you're right.' She comes right back at me and challenges my point, my reasoning, my beliefs. She is one of the sweetest souls I have ever been in contact with. Her spunk, tenacity, and intellect blow my mind and with every single obstacle and devestation with this disease. And with every hit that she and her family has experienced she has been able to view it in the light it is, but still appreciate the small, little things in life on a day to day basis.

To say she can rock the short hair, would be an understatement and I could only dream of having her fashion sense and desire to read about as much Buddhism, meditation, and yogi lifestyles as she does. Pscyhologically she challenges me, as she has an even stronger sense of heart for Psychology and Education and KIDS.

The world, in general need more people like Anne. Her mindset, her love and devotion to her family and friends, her acceptance of the world and the indivduals around her. She makes me a better person by just our email exchanges.

Anne, unfortunately underwent an allo-transplant and the results are not what she or any of us hoped it would be. In addition, she is suffering from painful and advanced GVHD (graft verse host disease).To say that the results of her allo-transplant recently are unfair would be a drastic understatement, and hearts are breaking all around the world for what this horrific, painful, devestating disease does to some of the most amazing people who have graced this earth.

Although I do not want to be filled with anger -- I am. But, what I ask you to please, please do is to go visit Anne's Caringbidge Site and sign her guest book. I know she could use some peaceful and comforting vibes of strength and acceptance during this difficult time.

Love you, my beautiful girl.

Please remember to hug the ones you love today.

B.

It's nice to laugh again.

2011-04-03T15:06:00.005-04:00

It's nice to laugh again.

It's so, so, nice to laugh again. That's all I keep thinking about these last few weeks. That, I've always enjoyed life, sucked the marrow out of everyday, and experienced such extremes of beauty and pain; however, as much as I enjoy[ed] life I have always been a somewhat serious, intense, person who loves to mull over philosophy, literature, social justice, and activism in any shape or form.

So, in the midst of these last few years and my core values I haven't laughed. I mean, of course I've laughed but there is a huge difference between a laugh and huge, big-hearted, face-hurting, whole-body shaking kind of laugh. And as of recent, it's been happening everyday. I feel blessed and grateful that there are a few people in my life who have brought such humor and smiles into my world, that I laugh hysterically almost every day now. It is a breath of sunshine that I have been craving for years. And I have it.

And for that, I am so grateful.

I struggle with talking about personal, personal things on here; however, a part of me feels sometimes my vulnerability lends itself to comforting others. So, again, here I am, jumping -- knowing the risk of what I write could be a little bit too much exposed of my heart. But, for now, I believe it's necessary.

I have been fortunate enough to have wonderful men in my life the last few years. Rocks, men, who romantically and friendship and family wise who have stood near me. From my Uncle Jay who would would and did in some ways, move mountains for me for me to live in a happy, healthy, healing environment, to my brother, Jacob who is one of the few people in my family who can just sit with me and 'be,' during the darker days. And understand that it's okay... to not ask questions or push or prod on my emotions. To John, my rock, my heart, who has witnessed my illnesses from the time we were babes and met when we were sixteen to now. To one of my deepest loves, Darrel. Who paved the way for me through his stem cell transplant, and battled the last four years with me through our highs and lows on every level, in every degree, in every form and showed me how to love in a way I didn't think was possible. To now, Richard, the man who makes me laugh my days away, accepts me, and has shown me that it is okay to let others care for me, spoil me rotten, and allow others to take the lead -- and it doesn't mean that I am lesser or weaker, it only means that I deserve to be treated in the way I treat others, and to be genuinely and selflessly cared for.

When you are faced with a chronic illness such as cancer many people believe (and I was shamefully one of them) that no one could every love you with this disease. The uncertainty, the unknown, the pain, the side effects, the treatments, the traveling, the stress, the tension, the fatigue, the lack of energy, the dark days. Who would voluntarily want to be part of something so intensely sad, unless they were there before the diagnosis?

I remember speaking to Adrienne about this. A was always so confident about the fact that there would be men out there who could love us despite this disease. She believed in humanity and was more confident in the male species than I was. She believed there were men out there who had big, big hearts, sensitive souls, and the maturity to accept us (all of us). That even though we were in our twenties, there would be someone who would see this disease as a strength, as a true testament to our character, wisdom, and drive towards our goals and life. They would see that in us. But I was always very skeptical. To me if a man did not experience this first hand -- why would they want to be with someone with this much risk? How would I react if the situation were reversed? What does society tell us to do if we had a choice between a healthy woman or one filled with illness? (Run for the hills! of of course). Would a man stay with me out of pity if things got too tough? Would I be able to keep up emotionally in a healthy relationship while taking care of myself physically? How would I give back if I'm battling a life-threatening disease? Was it immature to think that I still want the same things, and crave the same things as my friends (a partner, kids, a life... for the future?) Was I insane to want this? Was I crazy, even during some of my darkest days during treatment thinking: I still want to find that counterpart in my life, a best friend to share my life with?

With this disease comes difficult and challenging questions and we are all trying to find our way as gracefully as possible. But all of us, whether we are healthy or not have these questions. They are just more enhanced when you have this disease. And it becomes more and more clear who you connect with, who you do not, who you want to invest your time into, and who you do not. And to me lately, I have had a lot of clarity. When before I thought I might be a little crazy... I can tell you in this moment, in this very moment these are understandable and healthy questions. And, no I was not crazy nor insane. I was and am normal -- and Adrienne was absolutely right (she usually was).

At this point I am only twenty seven; but, I have many more years to go... and although I have and have had wonderful men in my life who knows what the future holds for me or anyone. What I do know is -- We deserve this. The refractory kids, those with chronic illnesses, those with ANY illness, should not settle for anything less of what they really want in life. No one chooses our illnesses. We get dealt a hand of cards and we choose how to play them. So play them with the philosophy that we are deserving, we are allowed to want, crave, and desire, we are allowed to want more out of life and our futures.

I strongly feel that young women who are dealing with this illness, whether you are hesitant to let someone in due to the fact that you had cancer, are in the midst of treatment, or are someone who has the experience of a chronic-life-long disease -- if you feel ready, and it is something you want: let them in. We all deserve happiness. We all deserve to experience compassion, laughter, love, friendship, empathy, and happiness. It is our choice if we want to settle -- or to let go.

For me, I can safely say for this moment in time... I am so glad that I let these people into my life. Life always comes down to choices. And although I have no idea what the future holds, for today, for this moment, in this minute in time I am making choices. And for me, I choose laughter. I choose laughing with my entire body. I choose laughing my days away. I choose wanting more, always.

I choose to let go.

I hope you allow yourself these same choices.
Because, whether we are healthy or ill, we each deserve them.

Love & Light,
B!

In love, with life.

2011-03-29T12:00:00.009-04:00

I miss all of you dearly, and although I do not have time to update about all the new happenings in my life -- which I promise to do very soon (most likely the first two weeks of April, so check back!).

I can tell you that I am completely fulfilled in the following areas of my life:

Success in school (ALL of my Lesley classes were transferred in! only three more electives to go, plus internship: graduation date set for May'12)
Beautiful friends (Spring Break with my Dtown Girls and a visit with Chris! Travels to New England to visit with my Boston Loves)
Health (stable weight at 125 lbs. and counts, smiling everyday)
A New Love (I am grateful and fortunate to connect with someone who understands me, accepts this disease, and I has easily become one of my best friends)
Me (I haven't been this happy in years... and am planning lots of travels this summer!)

As of recent, all of my senses are heightened in my life. Food tastes more rich and sweet, my scent is slowly coming back and I'm able to smell the coffee grinds when I enter starbucks again (my heaven), colors and the sun shines more brilliant, and I listen to music in a completely different way now.. and take all of it in slowly, and savor each note.

Life is truly beautiful these days. And with that, I will leave you with one of my favorites that I am seeing this weekend... Ms. Ingrid Michaelson :)

Happy Spring!

Love & Light!
B.

Surreal Sweetness

2011-02-20T15:21:00.009-05:00

So the scans revealed a complete...

Somehow, it happened. It's surreal, I haven't actually digested it yet.
But, somehow my scans continue to be clean.
This will be my first birthday since I was twenty one (turning twenty seven in two weeks)
that I will be cancer free.
Life is amazing.

And who do I have to appreciate and thank for all of the years of support
that lead to this wonderful news? yeah, that would be....

You!

Thank you all for believing in me,
even when there were moments that I did not believe in myself
or that this could ever in a million years be a reality.

Sending love and tons of light!

As the week unfolds...

2011-02-13T15:39:00.003-05:00

As the week unfolds I will be heading to New York City for my lovely PET/CT Scan. It's hard to believe it's been three months since I was declared cancer free, time certainly does fly when you are healthy.

We obviously hope that remission continues, if it does not though -- we do have a plan of attack as always. This week, I hold some of Kirsten's poetic words, close to my heart as I head in for testing and am hopeful for good results.

Kirsten's words:

I am

I am writing to you now from this place of strength. From this place of heart-thumping, heart-held tenacity. I am writing to you now to remind you of the spirit that lives and breathes, rises and falls, deep within and beyond these walls of the body. That lives out there, amongst the woodland owls, the ancient oaks, the cherry blossom petals that dance as if ballerinas poised in a slow curtsy to the ground. I am writing to you now so, should you need me in the future, at a time when struggle overtakes you, to say this: You are the owls, the oak, the cherry blossoms. You always were and you always will be, no matter the body that holds you now.

Sending love and light,
B

There are no words..

2011-02-08T23:59:00.003-05:00

The entire Hodgkin's community (especially the refractory club) and I are completely heartbroken over Kirsten's passing on Monday morning. We send our love and light to Ian, Susan, and the rest of K's family. There truly are no words for such a sweet, kind, warrior.

Kathy, mother of Eric --
posted this on a tribute to Kirsten on our Hodgkin's forum,
she posted this specific poem because Kirsten posted it for Adrienne.

Three great warriors.. whom will always be held close to my heart.
Please remember to hug the ones you love...

-------------

For Kirsten,

A Parable of Immortality
by Henry Van Dyke

I am standing upon the seashore.
A ship at my side spreads her white sails to the morning breeze
and starts for the blue ocean.
She is an object of beauty and strength,
and I stand and watch until at last she hangs
like a speck of white cloud
just where the sea and sky come down to mingle with each other.
Then someone at my side says,
"There she goes"
Gone where?
Gone from my sight . . . that is all.

She is just as large in mast and hull and spar

as she was when she left my side
and just as able to bear her load of living freight
to the place of destination.
Her diminished size is in me, not in her.
And just at the moment
when someone at my side says,
"There she goes"
there are other eyes watching her coming . . .
and other voices ready to take up the glad shout . . .
"Here she comes"

-------

Sending all of you love and light,
B

Lighting a candle for Kirsten

2011-02-06T18:06:00.002-05:00

I have the amazing opportunity, to connect and meet lots and lots of cancer warriors. Through the lovely web-sphere, and just everyday life I am constantly forming, beautiful relationships with fellow sisters and brothers who face some of the same adversity, that I do. Although there is a very significant bond between any cancer survivors, there is an incredibly intimate one between refractory HLers. It just happens -- I can't explain it, but we all understand each other in a way no one else would.

One of those women, is Kirsten. I can't even begin to tell you how this woman inspires me -- and has been such a tender, loving, form of support. But she has. Besides her amazing humor and wit, she practices meditation, mindfulness, yoga, and surrounds herself with positivity in a way that I strive to do in my everyday life. When, I was down and out last year and this summer, Kirsten and her mother both sent incredible healing vibes and positive thoughts my way.

Now it is our turn, Kirsten has been having some difficulty with her treatment, and although none of us know exactly what is going on in Vancouver, we are all thinking of Kirsten. Her family, has asked Kirsten's friends and family to please light a candle for her in the next few days, to give her comfort. I hope you take the time, this week, just for a few minutes in your own house, if you have candles or when you see the sunshine or any form of light (because that is what Kirsten, truly is) to think of her, her mother Susan, and the rest of her family.

Tonight, and every night this week, we light a candle to send love and light to Kirsten in hopes that Kirsten is not in any pain, and strength for Susan, Ian, and the rest of Kirsten's family during this very difficult time.

To visit Kirsten's blog please: click here.
Please, please, keep Kirsten in your thoughts as this week unfolds.

Sending love and light,
B.

New Clinical Trial: for EBV positive tumors.

2011-01-27T20:05:00.016-05:00

(If you wish to continue to read this blog, once it turns private next month, click: here.)

As of recent (the last ten years), Baylor Hospital College of Medicine in Houston, Texas has been creating a clinical trial as a vaccine for Hodgkins patients (especially relapsed and refractory) for those who have tumors that are EBV positive. I believe, after research, and watching a few other warriors go through this vaccine who are EBV positive (we carry a virus, in our immune system that is the causation for mono), that this is a major key component to some of us who have very, very stubborn disease. Dr. Bollard, who is in charge of this study down in the heart of Texas explains the process much better than I do.

So, I am copying and pasting her email to potential patients for those of you who have refractory/relapsed HL. Believe it or not, there are two different arms of this study (one for those who have relapsed and are in current remission, and those who still have disease). So whether you are in remission (like me right now!) or are currently on clinical trials. You should definitely get your tumor block tested for EBV positive tumors. This can be done by contacting Dr. Bollard, and sending her your tumor block. The process of this trial takes about 4-5 months, in October, I was lucky enough to start -- and now the infusion I will receive is ready, and I will receive it once we receive the results of my next PET/CT scan on February 17th. Either way, if I am in remission or not -- we have a plan.

Here is the email to potential candidates for this trial: please, please consider it if you have relapsed, and get your tumor tested for the EBV virus. This trial has had phenomenal results, and it is more of a vaccine opposed to 'treatment' or chemo.

------
Thank you for you interest in our T cell studies for EBV lymphoma. Our current protocol uses autologous LMP1 and 2-specific Cytotoxic (killer) T cells (CTL) either as therapy for relapsed EBV+ve Hodgkin Disease (HD) or non Hodgkin's Lymphoma (NHL) or as adjuvant therapy after autologous OR allogeneic transplant.

In our previous studies, we successfully generated EBV-specific CTL in patients with EBV-positive Hodgkin's lymphoma (Roskrow et al, 1998 and Bollard et al 2004 J Exp Med). However, only very small percentages if any of them were LMP2A- (or tumor)-specific. These small populations of LMP2A-specific CTL did however induce complete remissions in some patients but we were unable to eliminate the EBV-positive Hodgkin's lymphoma in patients with bulky disease. In patients who received the CTL as adjuvant therapy post autologous stem cell transplant all remain in complete remission over 7 years later. In patients with bulky disease it is possible that LMP-specific CTL have good killing ability in these patients but that their low frequency precludes effective tumor elimination. We therefore went on to expand LMP2A-specific CTL in the laboratory in large numbers from patients with relapsed lymphoma and treated 30 patients on this protocol and saw complete clinical responses in 80% patients with active EBV+ve Lymphoma. Only one patient who was in remission at the time of CTL has progressed with the rest remaining in remission over 5 years. We have now started 2 new protocols generating T cells specific for both LMP1 and LMP2 (LMP1 and 2 specific CTL). LMP1 and LMP2 are the EBV proteins present in about 20% of patients with Hodgkin disease and NHL and these T cells that we grow from the patients in the laboratory should recognize and kill tumors positive for EBV. We have not seen any toxicity with these studies but they work best in patients with relatively minimal disease.

If you are interested in this study the first thing to do is to send me a copy of your pathology report confirming EBV positivity of your tumor. This can be emailed to me or faxed to me at 832-825-4732.

The other issue is that the entire CTL production process can take 3-4 months depending on the patient so we would want to collect blood at the earliest point possible to initiate the EBV-transformed B cell line (LCL) which we use as the antigen presenting cells. Ideally we will first collect your blood, the nurse practictioner will contact you to get your details and send a (blood) kit to you. Once you have the kit with the blood tubes and the consent form and the donor questionnaire I will call you to get the phone consent to draw the blood.

You would have to sign a consent form to consent to the procurement part of the study (i.e. giving us permission to make the CTL lines) only. You would have to donate approximately 60mls of blood on two separate occasions. As I said above, the consent can be obtained on the phone and the blood can be shipped to us. If it is possible to grow T cells (CTL) from you - once they are made and if you were eligible after autologous stem cell transplant and wanted to participate then you would have to come to Houston twice to receive the T cell infusions.

Kindest regards,

Catherine Bollard,MD
Associate Professor
Texas Children's Cancer Center,
Baylor College of Medicine
6621 Fannin Street, MC3-3320,
Houston, Texas 77030
phone:1-832-824-4781
fax:1-832-825-4732
Email: cmbollar@texaschildrenshospital.org

-----
Please look into this study warriors! I personally know two individuals (one who has continued remission for over four plus years), that this has been successful for. It's this new stuff on the horizon that makes me hopeful!

Sending love and light,
B!

So this is the new year...

2011-01-06T13:21:00.006-05:00

I am never big on new years resolutions, for me -- I like to think I should keep chipping away at my good qualities, or ones that better myself, and let the poorer ones fall by the wayside. So here are ones I hope to enhance this year :)

.Resolutions.

Get Strong(er)!: Physically, and especially emotionally.

Allow myself to be giddy: grateful, proud, appreciative for the little things.

(especially, be more proud of my accomplishments)

Laugh more. The more I realize I laugh, the less I cry over the pain of the world. Being silly and goofy makes me more relaxed, calm, and is a side of me I've missed for a really long time.

Luckily, it's coming back :)

Smile more. for everything that I have been through (and survived) and for everything that I will go through. I am so grateful to be here and have each one of you in my life; therefore,

I should show it!

So there you have it loves!
I have a feeling 2011 will be an amazing year -- I mean, starting out with a remission, I don't see how it couldn't be :)

The invites to the blog will be sent out (hopefully) by the end of the month. I'm a bit behind, as I've enjoyed all of my travels this month from Greece, to New England, and the lovely Pennsylvania Mountains.

So, if you wish to continue reading this blog once it goes private, again.
Please: click here and follow these directions. Happy New Year all!

xoxo,
B!

Milestones.

2010-12-27T10:25:00.016-05:00

If I could change the world, and pieces of our society... it would be our praise towards one another. So often in our world we are critiqued, criticized, or told what is incorrect, hurtful, or wrong to one another and especially ourselves. We are hard on ourselves as individuals, we over analyze our actions, sometimes even belittle ourselves. Yet, this is recognized as normal in our society. "I didn't do a good enough job," "I could do better," "I failed... I failed... I failed." It is natural for most people in our society to focus on the negative, or what we are/were unable to achieve instead what we DID achieve; however, when we praise each other for the good, sweet, beautiful things in each others lives, or even recognize it in ourselves... if we congratulate each other on small moments, or say "I love you," for no reason at all. We are held in question.

This is the part of the world I wish I could change. If we say something along the lines of "I know I'm amazing!" "I know I'm strong," we are seen as cocky or full of ourselves, when in reality? It is just an acknowledgment that we are pretty wonderful -- because we are. Believe it or not. We totally are. You included.

So one of the few things that I love, and hope to continue to do however fast, sick, or insane my life maybe is to recognize not only myself but those around me. The people I surround myself with, truly lift me higher. And with this being one of the most devastating years I have lived, it has also been my most resilient -- in the light of adversity, my family (which includes my close friends) rallied. They rallied so hard that instead of discussing funeral arrangements during the holidays this year, I am reminiscing about my moments hiking through the mountains of Athens, in Greece.

They rallied. for me. They rallied when I pushed them away, when I was impossible... when in my darkest moments there was no light to be seen. They rallied when treatment after treatment this year, I lost pound after pound, plummeting down to a bit under ninety pounds. They rallied when I lost people I loved, and I expressed that I thought I was next. They rallied when I told some, explicitly, that I no longer wanted them in my life (yet, they stood stoic, over and over again, until my light returned, and I returned to them). They rallied, and stood tall through my tears, my defeats, the loss of Boston, the loss of school, the loss of another past life. They rallied. And if you are reading this -- you did as well, because the support I gain from all of you, each one of you, is another reason why I am here.

I am here, because the people in my life are amazing. I am here because I gain strength from all of their lights. In turn, one of the most beautiful things that occur in my life as well... is that I get to pay this forward. I receive e-mail after e-mail from others in the cancer community, or individuals facing illness who read this blog and in turn know that if I went through hell -- they can too.

It's important for us to recognize the good, the beautiful, when we triumph, the positives no matter how small or insignificant they may be. So, now as most of us reflect on 2010. Here are my milestones that I wish to share with you.

Milestones

Transferred/Accepted into another grad program in Philly. Not only completed classes, but received a 4.0, and a great love for individuals in my group therapy class.

First remission in three years.

Holy weight gain. 90lbs to 120lbs today :) The comparison is frightening. And honestly, these pictures are a little hard to look at -- but, they make the point to other people who are facing illness, that you CAN come back. I promise you, if I looked like this only a few months ago...

Six months ago:

opposed to, today:

If you know me well enough, I have been talking about traveling to Greece since my sophomore year of college after taking an Art History class and learning about greek culture/history -- I can finally cross that off my bucket list, and now am even more in love with traveling then I was before. The travel bug has bit me, and I have no intention of holding back with Ireland, Scotland, Australia on the list -- and a revisit to Greece, with additional trips to Israel and Turkey. Don't ask me how financially I will do this -- but it will be done.

Last year, I could hardly walk to the bathroom, let alone even think of hiking a mountain. Last week, traveling through Greece my friends and I had the incredible opportunity to sight-see, visit the islands, but also walk (a ton since the entire metro system in Greece was on strike). The trip kicked my butt, but in an amazing, amazing way. From Mt. Yeserdes, to Delphi to the Acropolis, to Falapalos Hill -- these are the moments I hold close to my heart knowing, that my body is not only back, but able to walk 10+ miles a day, and LOVE it.

Although this is pretty personal, I feel the need to share this with other young women facing cancer treatment -- Aunt Flow, after three years, decided to make a come back as well. Who knows what this will entail for future fertility or hormones, but god damn, it is good to feel like a woman again.

Zero, I repeat. I am on zero medications. From being on fluids last year for months at a time, hospitalization after hospitalization, discussion of what I would like at my funeral, taking twenty plus pills a day. Tubes coming out of my chest at all hours of the day. To now look back, and enjoy my morning cup of coffee and a vitamin a day instead of the trials of several medications from cancer treatments, side effects, insomnia, depression, neuropathy and the list goes on... I am grateful, and thankful to have a point of detox and not be on any medication at all.

Nearing the end of course work. Between many treatments, two different grad programs, lots of classes/internships. Next semester I am putting away my final load of courses, then starting in May (2011) I will begin my LAST full time internship (that will extend to the following May 2012). Soon, this 60 credit degree with licensure will actually be a reality, after chipping away at it for three years.

These are the pieces of me that are intact, and I am so grateful for all of them, however short or long-lived they may be. And as we venture into 2011, I invite you to be proud of your own accomplishments and milestones from this year. Attempt to look at yourself with a positive lens, and instead of focusing on the goals or relationships you were unable to fulfill -- focus on the ones that you've accomplished.

In addition, this will be one of the last public posts of this blog. If you wish to continue reading my progress, or researching different treatments on here, or just wish to follow for no reason at all (because that is okay too!), Please click here, and follow the directions. After February you will be unable to publicly view this blog, as it will be set to private.

Wishing all of you a wonderful, reflective, new year.
Sending Love,
B

Drink it up love, drink it up...

2010-12-24T14:52:00.001-05:00

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.

2010-11-19T11:40:00.011-05:00

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

2010-11-11T21:10:00.005-05:00

I am in sweet
sweet --
beautiful,

Remission.

(complete remission)

for the first time in

three years.

Me and Max are happy campers! Go celebrate!

Rise

2010-11-09T13:23:00.002-05:00

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

2010-11-02T00:10:00.002-04:00

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

I live for them.

2010-10-21T19:25:00.003-04:00

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?

2010-10-06T14:20:00.002-04:00

this one!

Happy Fall, lovelies!

xoxox,

No news, is excellent news.

2010-09-22T12:41:00.000-04:00

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...

2010-09-06T11:25:00.007-04:00

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

Humbled.

2010-08-12T13:19:00.001-04:00

I truly thought one of the few things that would be a smooth transition would be school. It never does seem to work that way though, does it? :)

I was truly planning on only taking one or two courses at a small college here in Philadelphia. Nothing too big, but attempting to continue my program as best as I could, despite treatment being SO unstable the last 10 months. But, no, no. That was not the case.

At the beginning of the week, I finally had the brain power and energy (thank you Bendamustine!) to call and figure out the ligistics of how this would all work out. I explained my situation, where I was coming from the work that I had done, to the admissions counselor, and expected him to say "Okay, what classes do you want to register for." I had already taken so much time to decide the two classes that actually fit into my treatment schedule, that are doable, and ones I need.

Instead he said, "If you want most of your credits to transfer, you need to re-apply."
"Re-apply?" I said?
I'm thinking, are you kidding me -- classes start on August 30th.
Do you know what it takes to re-apply?
And as if one cue, he says, "To start this fall, You need to get in three letters of recommendation, your MAT scores from last year, transcripts, two essays, and an interview, by the 25th -- do you think you can do that? "
Oh right, and in between, I think to myself a round of chemotherapy. Lovely.

I didn't think I could do it, but I told him I'd attempt. I want this. I haven't wanted something this badly since I left Lesley University in December. I want my life back. And truth be told, I am a nerd. We all know this, and I absolutely, love every second I'm in school. It feeds me. It gives me purpose. It challenges me, and gives me the tools I need for my future clients.

The admissions counselor and I agreed that I could easily crank out the essays, track down my test scores and transcripts, hopefully bang out the interview, but the letters of recommendation would be difficult. Lots of professors are on leave, or teaching summer classes. Other's are busy on summer vacation, we both had doubt in our voices. So, we left it as... I would try, and we would see what would happen.

The next day, I sent out an email to several of my past professors, advisors, co-workers, and other supervisors I have worked with in the last two years. I thought, there was nothing I could lose by trying, right?

Now here is where the perfect moment happens, in which I can not even put into words how incredibly grateful and humbled I feel towards these women, and the world. I write one, email, and within two hours -- let me repeat, two hours, I have four individuals responding saying, "The recommendation will be out tomorrow." Or, "Please, Rebekah, I would be honored to write for you... can I be one of these individuals." And along with these responses, comes love, support, and confidence in my ability to continue my practice, that there is a need for me in this field, that they've heard it's been a rough winter, spring, and summer, and they are overjoyed at the possibility of me, little me, re-entering a program, and is there anything, ANYTHING, else they can do.

I cried.

I couldn't contain my emotions. Even though, they have been all over the place anyway. I just, cried, sweet tears, realizing how amazing these women are. How I have been so lucky to connect with such raw, brilliant, funny, and confident women. And they each assured me, our connection -- was not an accident.

There are still a lot of parts to this application process, but I'm shooting for this semester, and these things just make it much, much easier.

Needless to say, it was a humbling experience, and one that has deeply shifted my thinking. I have slowly, started to feed myself with more positive people, and positive things. Began yoga this week, and of course have been focusing on these essays. This is a moment, I know I'll carry with me, and just wanted to share with you. There are truly, truly, beautiful people in this world. And I am just so thankful that some choose to be a part of my life.

Sending Love,

B

Rebound.

2010-08-08T23:16:00.000-04:00

I do this. I crash, and somehow I rebound. Please don't ask me how, because I think it's more or less my family and friends who rescue me from the black holes that my body is tempted to fall into. Last week was an incredibly rough week. I thank you for ALL of your emails, and comments. It was good to write, what I was truly feeling at that time -- however short lived it was, or maybe in the future. I just wanted to write something small for all of you, since a few of you were a bit alarmed. I appreciate your concern, I really do.

I've started to realize when these ruts come about, I find pleasure in the smallest things. And it really tends to add up. So, here, I share with you. Another grateful list. Because despite this horrible hand of cards, I am so, so, blessed for so many things.

Grateful List:

My family

did you know I can call either of my mothers at almost any time of the day, and they are there for me? Not just 'there' physically, but emotionally, they are rock solid people. They keep me motivated, they keep me moving, they keep me alive.
My Aunts and Uncles on both sides of my family. They check in on me. They drive me home from chemo. They tell me I'm loved. They want to make curtains for me. They tell me I'm strong.

My brother. My brother has this power to sit with me, watch movies with me, give me space when I need it, and be there.
My friends -- I can't say enough about my friends. I can't even pick a state in which I could tell you how wonderful those friends are, more than others because, god damn, I am lucky. They are there, more and more, I realize this.
My puppy ....

Lily!

Scented candles
Clean sheets
Bright Green relay for life t-shirts from friends
Text messages that mean the world :)
Address books as gifts
A gorgeous apartment
Signing up for classes.... and being excited about it.
Lastly, all of you.

Are things still really rough? Yes. But as I move along, almost this four year journey of cancer. I've realized now, I'm allowed to have bad days. I'm allowed to be sad. I'm allowed to take time to experience the pain of this disease -- as LONG as I get back up.

Slowly, I'm doing it.
with your help.

Thank you loves,

B.

Lost.

2010-08-06T12:42:00.002-04:00

For some reason, ever since the shift in treatment. My mind has been playing tricks on me. I recovered a lot faster than I had anticipated, which is great -- however, now I have a lot of time on my hands, and I don't want to seem to move.

I've been in these ruts before. I'm tired. I don't know if I can move on to the next treatment. I realize this is a situational depression. I self destruct in a way, that I hate to admit. I cut myself off from friends, or push them away. I overanalyze. Over think.

Classes will start the last week of August, and to be honest. I'm a bit terrified. I don't feel myself these weeks, as it just reminds me of two summers ago, recovering from transplant, building myself up only to realize that I had relapsed, again.

I think for a lot of Hodgers, SGN was going to be 'the' treatment to take us a little further. I thought, I had at least 8 or 9 months of stability to look forward to, now with loss of hair, and being off the trial. I can't help but be a bit angry.

For the first time, in a really long time, I have no idea what comes after this treatment. After the Bendamustine. I am questioning everything, and everyone around me. Which is not healthy. I have a wonderful support system, and I'm not utilizing it.

To be honest, I'm a bit sad. And, I know I have a right to be. This is hard, this is all hard, hard, stuff. And, I never give myself enough time to recover, REALLY enjoy things, while treatments are shifting. I'm a type A personality, I need to focus on the next thing in front of me -- and the unknown, I think is scary for everyone, right? Especially me.

I was exploring fears, within myself this week. And, I tend to have a lot... you take the normal 26 year old fears, and pair them up with chronic cancer, its frightening. No one should be allowed to think the thoughts I'm thinking.

I need to climb out of this hole, and this time, just trying to figure out how.

B.

Eager Beavers -- this is for you!

2010-08-02T19:04:00.005-04:00

I've been meaning to post pictures, but between the move, treatment, and life, I've again lost my 'transfer' to do such. So, you will all have to be patient. However, the apartment is definitely almost up to 'Bekah' quality. But! You did not sign in today, to look for that.

For my eager beavers, who have been texting, calling, and emailing.
Here is the run down from last week:

Met with Dr. O, we did NOT do a scan, we stopped SGN-35, the pain was TOO much for all of us, and there was no quality of life left. In addition, there wasn't any reduction. Which equated to, another end of another trial. This was the 6th treatment I've been on in the last three and a half years. I feel old.

We switched to Bendamustine, a drug that has been used in Europe since the 60's and is FDA approved here for CLL and specific Lymphoma's (just not Hodgkin's yet). It has had great (fast, but short) responses. Therefore, if it works, it might give me some room to breathe without a lot of disease, but most likely the disease will come back fast. The catch: I am only allowed six cycles of this drug, and then no more... Another Hodger Kirsten is on this right now, you should cheer her on and see that she's been having a decent quality of life on it too.

As soon as we switched the drugs. My night sweats, fevers, pain, and other symptoms. STOPPED. (Yay! this is incredible news) This probably means something is happening to the cancer (so keep your fingers crossed).

Main side effect of Bendamustine: low blood counts. To yield my counts bottoming out, we inject a shot called Neulesta into my lovely body. The day after my drug infusions. This makes my stem cells/blood counts go UP! but causes my pain in my back and my bone pain in my body to be earth shattering to the core. Although I hate pain medications, to deter the pain, I utilize narcotics for most of the weekend that I've had my treatment. This means, I usually don't respond to people -- or if I do, you tend to get a pretty humorous response ;)

So, it's Monday evening, at the moment... and, I'm just about drifting out of my chemo-brain, narcotic-fog. I would say that this is how my schedule is going to be for those who keep track :)

Treatments will be on Thursdays and Fridays (next treatment August 19th and 20th)
Neulesta Shot will be on Saturdays (August 21st)
Pain, chemo-fog, unable to communicate well will occur between Saturdays and Tuesdays (August 21st-24th).
And we hope for good days... until the next round (September 9th and 10th).

I'll be checking in again, to update you on other things BESIDES cancer. As I am slowly starting to plan my fall schedule, I have some incredibly exciting news about this coming winter, my new roomie! (my pup lilly), my amazing family (yet again!) and sharing silly tears over the fact that this last 'check in' with Dr. O was my two year anniversary working with him.

Your cheers, posts, emails, and energy keep me going -- and this has been, and still is a small rough patch transitioning into a new treatment SO sudden. I thank you, I thank you, I thank you, from myself to my family, to all of you, for what you've given me everyday and what you provide me in the future.

Pictures to come soon, promise!

- B

Farewell, SGN...

2010-07-22T19:49:00.000-04:00

Just a quick note, after I ranted, I decided to make some calls to NYU and describe the pain I'm going through (as I've been telling them this for the last month). They, and I both feel that it is time to move on to the drug called Bendumstine. It's the first real chemotherapy (besides the short run on Doxil), I've had since transplant about two years ago.

All I am hoping for at this point is for my fevers and pain to subside...
since they have kept getting worse with each cycle.

The 'B' drug is once every three weeks, for now. The only difference is -- it is a two day infusion. So, one infusion on Wednesday's and one on Thursday's.

I'll be starting next week.
Let's hope this one doesn't tear me down too badly with side effects, as I still feel as though I have little reserves to fight anything back.

If you have been on this drug before, I would LOVE to hear more about it, the change is pretty sudden and I haven't done too much research on it. So, if you have any advice or experience you could share it would be wonderful (post a comment or email me: RebekahFurey@mac.com)

Hope you're all surviving in this heat.
Sending you Love,

Bekah

Work with me.

2010-07-20T14:12:00.000-04:00

I normally have 12-14 GOOD great days. Yes, most are in pain. But most of those days, I have enough energy to do something fun with friends, eat out, spend time with the fam, or enjoy time in doylestown.

Today was suppose to be a good day. Yesterday was too. So, was Sunday.

I feel as though, I really take on whatever treatment side-effects/cancer side effects I can with as much acceptance and grace as possible. I adapt, I change my schedules, I do whatever it takes to make those good days, absolutely wonderful. I pack as many friends, family, and 'me' time out of the apartment into those moments as I can. And with 12-14 days, it's felt sufficient enough to endure my 7-9 bad days that follow.

But ever so slowly as each cycle has been going by... my good days are getting slimmer. And this week, when my fevers were not suppose to start till Thursday, they started Sunday afternoon. I want to look up at the sky and just scream ' Work with me here! Please!' I try to handle these clinical trial with as much ease as possible. But when I only get 10 good days, and 20 bad days. My mood shifts. A bit of anger churns in my stomach.

I've followed the rules, I've taken the drugs, I don't push myself, I haven't slumped into a depression, I've let this treatment take my hair, eyebrows, and eyelashes, I've continued to lose weight, yet force feed myself every chance I get (not a pleasent experience). I'm doing everything I can, and this is what good karma gets me? more bad days.

This basically means, I have one solid good week now, and two lousy ones. It's frustrating, and the quality of life is now not nearly as high as it was, or needs to be. The chronic pain, is now an every day occurence. And, I'm not lovin' it.

Scans are next week, I've had one scan with progression, and one scan with a 'mixed' response; however, in my eyes it was still more progression then needed. My guess is I will receive another 'mixed' response (more progression); however, this time the big issue of quality of life, which has kept this trial going for me, is lessening. To me, this means it is probably time to move on to something else.

It would just be nice if something.. a good drug, really worked with me. So I can stop trying to live my entire life in one small week... opposed to a month, like normal healthy people.

I apologize for the rant. I think I'm in a need of a change, and most likely it'll be through treatment.

- Bekah

How do you live with chronic cancer?

2010-07-13T09:36:00.000-04:00

Between treatment last week, the move, and other odds and ends its been a bit of an emotional week. Sometimes, I just need reminders that we're all doing the best we can do (this includes me.). I wrote this post last spring, and sometimes rereading it, helps remind me of that...

-----

Throughout the last few months, I have been thinking, carefully. About this topic. About the beautiful, kind-hearted , soulful individuals who fall into this unforunate category.

Recently, after disclosing my disease to a class mate of mine, in one of my grad classes. She asked me, so how long do you have to straddle between both worlds, the world of normalcy and the world of disease. When, would treatment be over?

And, without hesitation, I told her never.
Most likely, I will have treatment the rest of my life.

And I began to think, about this population. Knowing, I'm no where close to being the only one in these shoes. That, somewhere, out there, while you are walking the streets. Picking up coffee, dropping your kids off at school, or sitting next to someone in class. You will cross paths with these individuals, individuals like me, who are somehow fixed between two worlds, attempting to survive, to move forward, to live. While managing a chronic illness. You think to yourself, that you could never do it. You could even comprehend, or imagine, what a future of drugs, and tests, and needles could be like. Trust me, I don't want you to.

But, there is also something else that you could never comprehend or imagine either. The drive. The desire. The passion. To suck, every bit of marrow out of life. In a world where people ask, 'how do you see yourself living in ten years?' I want to laugh, at them, and tell them. That, they know nothing. About life. Or the present. Or the beauty of now. I want to tell them, that I know the secrets. I know, more, about this, then them. I want to tell them as they look at my bright blue eyes, curls, and healthy laugh, that they have no idea. They have no idea.

I want to tell them, to stop thinking of three months, six months, two years. I want to tell them, to embrace today. I want to tell them a lot of things.

-

A few weeks ago, I had a dinner, with a beautiful couple in Ohio. The young woman, tried to convey how although she would never wish to have such a devastating illness, herself, or anyone around her, she desired this thinking. The mindset that everyone always 'claims' to have, but truly do not. The mindset, of living each day, till the last minute. And for every second within that minute. The mindset, in which we talk the talk, but trip and stumble when we actually attempt to walk the walk. And, its within these realities, that I realize, this is something, not many people, experience.

I live, with a cancer, that most likely will never be cured.
I live, with a disease, that might one day kill me. Or, the treatment, will kill me.
I live, with this, every day, of my life.
These are my realities.

I endure, pain, and discomfort, and instability, and honest to god, heartbreak, wrenching, tear-your-soul-out-heartbreak. From living with my own disease, and watching, for the last two years, and years to come, the devastation of cancer, illness and death. However, because of these factors. Because of this extreme. Somehow, my head and fragile heart creates another one, to somehow balance my world.

I experience pain.
therefore, I experience, beauty.

Just as my cancer, remains a consistent fear, during most parts of my life. So, does the love, that burns, deep within me, for individuals in my life. It is a deep, dark, secret of mine, but one, I finally wish to share. The notion that, I adore the people in my life, and love them, in ways, I did not even know existed. Therefore, I make it a point, to let, those people -- whether they be the sick, the healthy, or the inbetween. I let them know, how deep, my love, burns for them. Because for me, being honest, showing how much I care, and love, and adore others, calling out their beauty, their perfect uniqueness that no one else in this world can claim -- these are no longer my fears.

In truth, it is only cancer, I will allow myself to fear.
Which in turn, gives me the strength, to embrace
every day, every hour, every minute
and deeply love, every individual in both of my worlds --
as I continue to straddle, between them.

-
Today, I hope you take the time, to hug the ones you love.

B

Explain the pain:

2010-07-06T21:50:00.000-04:00

As I type this I am sitting on my brand new furniture, in my brand new living room, in my brand new apartment. Although I had devilish fevers all weekend, again my brother, moms, sister and my moving SAVIOR, Melissa (in the above picture) were able to move EVERYthing in one hot-steamy weekend. While I spiked 102 and 103 fevers. It's nice being surrounded with people who just keep tackling one things after another for me. Needless to say, I'm a very happy girl surrounded by Ikea furniture, bamboo, and my books. :) The next post, I'm hoping to post a video of the newly fresh-painted rooms, and the apartment since it's definitely a 'healing' place... and I'm looking forward to spending my time here.

This post is to clarify some things about the treatment I'm receiving: SGN-35. A lot of wonderful people, ask me how I'm feeling. There's never really a perfect answer for this question. Usually I say, "Today is a good day." Or "This is my bad week." I just wanted to clarify what exactly my bad week is, and how this whole process works. If that's okay with all of you :) Also, it's good for other people who are on this treatment to know that these symptoms/side effects are possible.

The treatment is a three week cycle. So, for example this thursday (July 8th) starts Day One of my three week cycle. After my treatment I have my 'Good Weeks'... Almost about two solid weeks that I feel decent enough to do something in 3-6 hours of time, or have movement, hold conversations, be vocal, participate in society, start YOGA (next week!), and basically do AS MUCH as I can in those 12-13 days of time. Then my "Bad Week" hits. This month, it will hit....around July 21-22nd. One of my friends recently said, it just feels like you sounded great a few days ago. And yes, that might be true, but I'm here to try to explain the pain of my bad weeks. When they hit, things dramatically shift. And although I might have a good day in my bad week, it usually means I'm really tired of laying in bed, so I force myself to do things, even with 103 fevers.

So, what does a bad week entail:

If you have ever had the flu. It is basically like having the flu for a solid seven days.
I start with high fevers, usually 102-103. Sometimes, if I'm lucky they go down, other times they don't. These are the times people usually don't hear from me... just because, I'm so exhausted in trying to beat down these fevers, that I can't focus or think.
Vomiting. enough said.
Pain, I'm here to explain the pain because... oy vey. It hurts. Sometimes a combination of pain meds and muscle relaxants help? But usually I have 2-3 days where I just literally can't move because my muscles and bones ache so much. A lot of people compare this to Fibromialgia, but to the 10th power, and it doesn't stop... until I receive treatment again.

And that's where the cycle ends. This 'Bad Week' ends, somehow Di or my mom drive me into New York, I receive an infusion. And, presto -- my two 'Good Weeks' are back. I hope this clarification helps all of you, so now when you ask I can just say "eh. 'good week' or 'eh, bad week.' Makes things easier for me :)

So, I'm headed to New York on Thursday. Even though the infusion reactions are pretty violent themselves, it's nice to know... I have some good days to look forward to. Some good, BALD, days may I add (by next week) too. The SGN has pretty much destroyed any hope of hair left. So, the buzzers will be coming out next week.

Let's hope I can still rock that bald look ;)

Hope everyone had a wonderful 4th of July.

I'll be posting soon on one of my good days :)

And, showing you this BEAUTIFUL apartment that I am blessed to be living in.

Lots of Love,

'I feel it all. the wings are wide.'

2010-06-22T14:40:00.007-04:00

Last Wednesday was an important scan....

The results showed 'stable' disease. Some nodes increased, others stayed the same, and one or two decreased in size. However, there was around a 17-18% increase in total tumor/node volume. Therefore, my oncologist team feels that this treatment is (possibly) keeping my disease at bay -- this may or may not be true. But we won't know for sure. Between last scan and this, there was a bit of a miscommunication, and I won't bore you with the details; however, nothing is larger than a 4cm node, imagine a small grape, those are the sizes of my tumors. At this point in time, it's really hard to confirm if the drug is doing something, or this is just my normal progression of disease. Whatever it is though, it has kept my horrible symptoms that were occurring from November to March, to a minimum. So there is the positive.

The difficulty however is still the dramatic allergic reaction I have during infusions. My team and family compare it to 'being in a car accident, once every three weeks.' A few days after my infusion, the pain is so severe that I can only move my neck up in bed some nights. However, the SGN is actually working longer than we had anticipated, so we're all smiling about that. The pain, the side effects, the travel, the fatigue, in the long and short run is worth it when I have...

my little brother :)

My dtown fam <3

beautiful, beautiful friends from all over...

strength from myself,

and all of you...

I continue to put one foot in front of the other, and cherish every minute that I have the energy to enjoy the sunshine, my family, friends, food, and next week -- my new apartment.

With my 5th infusion behind me (last Thursday), infusion number six will be July 8th. And it appears, with every two infusions we will then scan again to keep a careful watch over this treatment. Therefore, we scan at the end of July.

I hope each one of you are doing well. I know there are a lot of warriors starting new treatments and still in the trenches here with me. So, if you have time, please visit some inspiring blogs that are close to my heart, and leave some love.

Here's to my refractory loves:

Anne who is starting a new chemo regimen, to prepare for her allo transplant.
Hillary who is going to be juggling chemotherapy with lung treatment as well.
Chris who will be having a scan in early July to hopefully determine his disease continues to be stable or reduced.
Marsha, who does not have a blog -- but please send her some warm and positive thoughts as she endures a chemo cocktail that are not being so wonderful to her blood counts.
And lastly, to Kirsten, who just inspires, and blows me away with her positive attitude as she continues her cancer battle as well. Please read her latest entry and poem, it is absolutely beautiful.

Sending love... to each of you,

Bekah

a new start..

2010-06-11T00:57:00.001-04:00

This post confirms the official new beginning, it affirms my come-back, it demonstrates that even those who you think after weeks in the hospital might never see the outside world again -- will surprise you.

I may have lost ground, somewhere along the line this year. But, I'm gaining it back in a different way. I tend to do this every year or so, if you aren't familiar with my story. It keeps this interesting. Never dull. Never boring ;) Even though I really wouldn't mind a little boring in my life.

There are still a million and one things on my to-do list before the first of July but a big one I get to cross off. It's all thanks to my Moms, Uncle Jay and Aunt Bobbi, we finally found myself a new apartment in Doylestown, starting July 1st. It's in a perfect location (I can walk to the bus stop, where it picks me up for NYC), I'm practically neighbors with one of my closest and oldest friends here (Hi Mr. Ward!), and starbucks, the dtown bookstore, and my favorite bagel place are walking distance. The parents are about a 5 minute drive for any emergencies, and my pharmacy is across the street. Now how sweet is that for a cancer patient? :)

In addition, my Aunt and Uncle have also opened a trust account for me. Fortunately, I haven't needed to think about financial issues too too much in the cancer world, but as treatments continue (we never planned on me being sick for this long - who wrote this story anyway?), some of which are not on my plan now -- or free from clinical trials, I am here, like the rest of the world, to graciously ask for any donations. Help for bus rides to NY, help with prescriptions, help with IV fluids at home when needed. Cancer is definitely a full time job, yet, we're the ones paying! and not getting paid. Anyway, I will slowly learn how to attach paypal to this account, in case any of you would like to make a small donation to the trust.

And lastly, we approach the dreaded scan next week. Which is where I want to share a bit of information about the SGN, because it might be my last post on it. Originally, the smaller dose as we know did not work. I have a small feeling, due to symptoms, that this large one is not working either. Which will mean a new start of treatment. For those who are or are about to go on SGN, I warn you about the side effects/allergic reactions I had during ALL of my infusions, even with premeds.

Allergic Reactions:

Rashes over my entire upper body, and I mean, covered from fingertips to shoulders with red blotches, also throughout my legs, and spots around my hairline and upper face.
This is not to scare anyone, but unfortunately, during my very first infusion I lacked oxygen and was unable to breathe for a few seconds. The drug labored my breathing to the extent that I could not breath on my own.
Deep, deep, raw pain in my lower back (where your stem cells develop). This would go on and on, until they tripled my dose of morphine.
Fevers during the infusion
High heart rate
Low blood pressure

Side Effects:

Neuropathy (I know I spelled it wrong, I apologize). Losing feeling of my toes, but within others its been extreme to full feet, fingers, and hands.
Hair thinning - they tell you this is a rare one, and now I've spoken with plenty of others that agree it is NOT rare. Haven't needed to take out the buzzers yet, but I'm getting close.
GI tract, I've hardly consumed any chocolate or coffee since my first infusion.

So, that is so far what I've experienced. Through cancer B-symptoms, the drug tends to where off one week before I am suppose to go into my next infusion. So, I have an infusion, have a decent two weeks, and then week three -- as it started for me on Wednesday, the fevers and vomiting hits. I've also had low blood counts, dehydrations, and other issues throughout this treatment but I mainly believe that is due to my cancer and not the actual drug.

So. This is suppose to be a cheerful update. And, it is! Whether I continue this treatment next week (scan on Wednesday), or am told that I need to start a new treatment due to further progression it will be a new step. A step towards a small form of stability in treatment (that we haven't seen for a long time), or a step towards a new treatment that will hopefully start showing this beast who is boss. Either way, these are steps forwards, and god knows I like to move :)

Here's to new, delicious, beginnings!

Sending Love,

Grateful. for. the. fam.

2010-06-05T11:42:00.000-04:00

These are my ten younger cousins, my grandparents on my mother's side, and my pup, Lily. These last few weeks, I can't even tell you how grateful I am for my family -- the Furey's and Rosan's. They have supported me, emotionally, physically, financially, mentally, moving-wise, and in other areas you can think of. They truly lift me up, when I am down.

So! Decisions have been made. And although, it may not have been 100% what I have wanted to do if I was healthy, this is a good compromise, and I am at peace and happy with my future plans.

I've finally decided to move closer to home, near this beautiful family, and lots of old friends, and leave Boston for the time period. I have decided to transfer programs to a PA school here, close by, and continue my Masters in Counseling Psych (focus in children/teens), and move into my own place in good old Doylestown. Here, I'll finish my degree in another year or two and then see where the wind blows me. Originally, this was a very hard pill to swallow. My love for Boston will never burn out; however, a lot has changed over the last few months, and I know, this is the right move for the time being.

I have the support of my family around the corner, good, old friends that have been wonderful to me here, and I am much, much, closer to treatment. Although, I don't want to admit it, its been really nice, being able to lean on others, when needed during these months. And though I know I could have gone back to Boston and run myself into the ground for the third time :) I think I would rather take things a bit slower, here in Doylestown. Be near family. Enjoy things. Pace myself... and get stronger. And that's much easier to do when you have your family right around the corner.

So game plan for life: Transfer from Lesley University to Chestnut Hill College, find an apartment (which will happen HOPEFULLY any day now), YOGA, and smile more.

Game plan for cancer: Enjoy these next two weeks. PET/CT Scan on the June 16th. Prepare for the worst (that SGN-35 is still not working, and we hop on to a new treatment), and hope for the best (stable disease, so we can continue this treatment). We'll see which way it goes.

So, here's to game plans :) and being happy that I have some, once again.

'you will find peace within yourself, once you've found all the pieces....'

Sending Love,
B!

Glorious.

2010-05-26T14:36:00.002-04:00

This blog started out as a huge release for my feelings and emotions. Unfortunately the last two years, with so many hits, and strangers coming and reading I've realized how much I've reeled myself back and put some walls up. Which is a shame. I love writing, and even as of recent people swear I should collect some of my old writings from here and the board and put them into some kind of memoir.

At this point though, I've narrowed the readers on this blog down to 200. Still a lot, but nothing like before. I miss writing with passion, and talking about the rawness of this disease and my life. I miss it. I still write everyday on my own. However I can't tell you how nice it is to help other cancer patients with information, or other chronic illness patients with how to go about this life as gracefully as possible.

I watched a lecture yesterday with my brother on natural happiness and synthesized happiness. The difference? Natural happiness is something more or so expected in our lives that we would definitely be joyful over, ie, winning the lottery, visiting a long-time friend, a graduation. We expect to be happy, we usually get it, our brain is wired that way. Flip parts of those thoughts around and you find the synthesized happiness. This is how we perceive our situation, and what we take from it -- it lends you to be happy if you are in control of this part of your brain (which he revealed obviously, many of us are not). He gave a great example of a innocent man who had been convicted for life, the man spent around 50 years in prison until DNA proved him innocent. One of the first statements he released was

'I don't regret a moment of it, it was glorious.'

There are probably a lot of you staring at that phrase and thinking, is he insane? As soon as this lecturer revealed the picture of this man and his quote, I didn't flinch. I understood. To a certain extent, even under the harshest of circumstances we create our own happiness. Yes, there are things we will get in life (few and maybe far between) that will REALLY make us happy. But the moments that we are living, are ours to own.

Sometimes, I am in a prison. My body is my prison. For months, I was throwing up every meal, my body ached everywhere, I had blood draws almost everyday, and to say I was weak would be an understatement. Flash forward to today: The last two weeks have been heaven. Those two weeks I did not throw up, spike fevers, need fluids, or take extra medication. Did I do anything crazy? Did I win any money or meet the man of my dreams? Did I land a great job? Or did my disease get any better? no. But I control my perceptions over things. Most people might think I'm crazy. 'So, all you did was visit friends in CT... have dinner with your Aunt and Uncle... have a few lunches with friends.. and spend time with family?' yeah. that is all I did, and it was wonderful.

I won't lie, January-March was a low, low point for me. I couldn't move. I was vomiting 4-5 times a day, at least 20 pills a day, losing weight, needing two units of fluids, tons of blood draws, I was wasting away. But I can tell you, in between -- there was a dinner with my aunt and uncle, a visit with a friend, much TV watching with my moms, and lots of phone calls from friends that kept me going. I write this because, I truly believe our lives are all about perspective. We will do things and experience things we absolutely loathe, or that are insanely painful to continue on our path. But in my eyes, at this moment, even if you are literally or figuratively living in a prison, there are moments... somewhere.

I gaurentee fifty years in prison ain't no cup of tea. But I also bet, that man left that gated institution with knowledge, friendships, an abundant amount of mental stamina and strength.

So, it is. in many forms about perspective and this different form of happiness. Will I still be happy when one of my friends gets married, has a baby, or when I finally graduate? Of course. But I will also soak up happiness when I get to have lunch with a friend, when food stays in my stomach, and when my body doesn't hurt for a few hours in a day.

So remember, you do have your natural happiness. Things that will obviously make you happy. But, your synthesized happiness is something you can actually control, it is a lens you look through that can better your life, your relationships, and your experiences. For me, I always wonder what it would be like to compare myself to my peers... what would each say on our 50th birthday parties? Because I know there are a lot of my peers out there who 'expect' to get to age fifty, and definitely will not say the same thing I do, if I get there. Can you guess what it would be...

Maybe something along the lines of, 'it was glorious for me too.'

-----
Infusion four tomorrow: positive thoughts for no more allergic reactions.

Sending Love,
B

I'll take it!

2010-05-19T20:14:00.003-04:00

Although there was a serious emotional hit from the scans, something has changed physically after this last infusion...

What may you ask? I actually feel (gasp) good.

I have much to update everyone on, as I'm starting to formulate a plan again for life :) and the future. The pieces feel like they're starting to fit together, little by little. Even, if the treatment does not work with the increased dose, I am starting to feel emotionally and physically strong enough again to start another battle, with a different treatment -- if need be.

To note, things that are going well: I haven't needed fluids in two weeks, I have energy, I am eating more and more (maintaining my weight), my counts haven't seemed to take a hit (yet), I am finally done blood draws on Sundays, so this past weekend I was able to visit friends from undergrad in CT, and spend the entire weekend with them, which has been the best medicine of all. And the most smiles and laughter I've had in a long, long time.

Things are far, far, from perfect. But, for at least a week or two, I've been feeling good. And, I'm going to ride this wave for as long as it allows. I leave for NY again for infusion number four on the 27th. We will pow wow with Dr. O, and determine when a CT or X-ray will be since now we've done two infusions with the higher dose (1.8) instead of the lower dose (1.2). Most likely it will be soon.

For now, its been a calm, lovely, and beautiful week/end with friends. Friends, who I have never, in my life felt more grateful for...

'In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.'

Sending Love,

B

Results

2010-05-08T09:08:00.009-04:00

Bad News: My disease has progressed in several areas in addition to new disease. Progression of old disease ranges from .5cm - 1.5 cm. The largest node is now 5.0 x 5.5cm, above my right hilum. This is the largest my disease has ever been. I also have new nodes (since transplant) located at the back of my abdomen ranging from 1.0 x 1.2 cm.

Decent news: My therapuetic dose was lower than normal, since the first two cycles were studying the effects of a pharm drug in combination with the SGN-35. That means, they're letting me stay on the trial for a few more cycles to see if the normal dose 1.8 per kgs, instead of the 1.2 per kgs I've been receiving will make a difference.

In other News: I do not have to be back in New York for my weekly visits anymore. Therefore, I won't be here till May 27th, for my 4th infusion. As I had my 3rd infusion (still with allergic reactions) yesterday morning.

'i pray to be like the ocean, with soft currents, maybe waves at times. but, more and more, i want the consistency rather than the highs and the lows.'

B

Oy Vey.

2010-04-30T20:04:00.001-04:00

Again, wishing I had better news to relay to you all. But it is what it is...

Monday the moms and I headed to the ER due to major chest congestion and coughing. Luckily, it was attributed to major allergies and sinuses. The X-ray revealed no pnemonia to speak of. Thank god. However, the coughing and other symptoms has prevented me from receiving a good nights sleep the last two weeks, and added antibiotics.

Thursday morning, I arrived in New York City for my weekly check-up. I had been feeling extra fatigued and light headed but just assumed it was due to my head cold. After several blood tests and my check-up with my NP the results came back and it showed that my Hemoglobin (red blood cells) had taken a huge nose dive as well as my potassium (major lack of elctrolytes). I could hardly walk, or keep my head up with my numbers all over the place. The rest of the day was spent in the infusion room to receive fluids, potassium, and a unit of blood. We arrived at 9am in the office, and left by 8:30 pm that night -- long day to say the least.

This morning, I headed back there to recive two more units of blood since my levels were so low. My reserves aren't that great right now, but I'm attempting to hold tight and see where this takes us. For the first time, in a really long time my oncologist team is again feeling that these symptoms do not have anything to do with my cancer, nor the treatment. SGN-35 is not suppose to cause 'counts' to bottom out. So, today, my NP decided to do addition blood tests to see again... where these mystery symptoms (the fevers, vomitting, low counts) are coming from. We are all feeling again, that something else, or some type of infection continues to rear its ugly head from week to week, and no one can put their finger on what it is. To say it is frustrating would be an understatement.

On a good note, this is the last 'weekly' check up I will have. My visits once a week to New York have definitely taken a toll on myself, my body, and my family and friends -- we are ready for this part of the trial to be over. After next week, I will only have to return to NYU for infusions (once every three weeks). So, we cheer for that.

In addition, I'm staying at the Hope Lodge througout the weekend and next week. I have received two cycles of SGN, and next Thursday morning, May 6th, I will have my first scan. If the scan reveals stable disease (which we hope for), I continue on this trial, and receive treatment (for cycle three) the next day, May 7th.

This part of the trial has been a long one, I'm grateful and thankful that it is over, and hold onto hope that the scan and future treatments reveal promising news. Thank you all for your kind thoughts, and positive support. I'm not sure how I would keep truckin' along without each and every one of you.

Lastly, I officially turned 'two years old' on April 22nd. Although, yes, my transplant failed, it is still an accomplishment -- that I'm here -- still kickin :)

Sending Love,

Bekah

Update

2010-04-19T16:19:00.004-04:00

I've decided I hate reporting bad news. I love making people smile with my good news. Maybe I am not cut out for this cancer lifestyle -- I'm ready for a new life now please! :)

Alright, here we go, quick and dirty:

- As easily as the ESR rates came down, they bounced back up (around 80ish). Dr. O said this will be normal, eventually during that second or third week of blood work, we'll chizzle that 80 down to 70 and so on.... I'm putting a lot of faith in him lately, lets hope he's right. We'll find out this Thursday if my ESR has gone down again since I had treatment at the end of last week (the 15th).

- I had a mighty rough allergic reaction to the SGN this time around. It was scary. I wish not to discuss it. I'll be pre-medicated during my next cycle, to prevent this from happening again.

- My 'feel good week' and no more fevers/vomiting, ended right before my infusion last Thursday. The fevers roared back after I was at the end of my Leviquin dosage (anti-biotics). So, once again I'm being slammed with anti-biotics, IV fluids, fatigue, night sweats, you name it.

The most difficult thing for me, is to taste the sweetness of just... feeling good and then all of a sudden it being taken away. It appears that every time I have a small glimmer of light, a huge wind just blows it away. I'm trying to handle my emotions in as much of a consistent manner as possible, but I'm not going to lie. It's difficult. When you have good news one week, and not so great news the other. When you feel SO good with blood counts, and then... they dip or crash. Some people have no idea how much their mind really is connected to their body.

I really am trying though, behind all of this I still attempt to be grateful.

These things I am oh-so-grateful for, would be: My family, knowledge that I have the resources to keep me alive as of now, really REALLY good-beautiful-kind hearted-understanding friends who are going with my flow because everyday I feel differently, an amazing team of doctors who literally hold my hand when things appear out of control, a roof over my head, FOOD. I have a lot. I know I do.

It's just when you know there is more... outside of this cancer life. You want it. You want it badly.

I want it.

B

Big News :)

2010-04-03T00:11:00.001-04:00

This is a little bit of shocking news, hence the 'oh my gosh!' gasping face I am posting for all of you... what a difference a week makes!

And by the way, I apologzie, you will all have to suffer with these type of shots, if any, because unfortunately my camera is still in Boston. So I am unable to shoot pics with friends. Anyway, lets get to the good stuff...

Thursday Diane and I hoofed it back to NYU for my 'check up.' I will have these weekly 'check ups' for the next five weeks, as protocol for the clinical trial. One of the blood tests that is looked at weekly is my ESR or your SED rate, my nurse practictioner defines it as the following:

ESR is a blood test that we monitor with our Hodgkin’s patients. It is a non-specific test that measures inflammation and in HD it can sometimes correlate with active disease when elevated.

ESR is also known as = erythrocyte (Red blood cells) sedimentation rate or your SED rate: rate at which erythrocytes settle out of anticoagulated blood in 1hr. This test is based on the fact that inflammatory and necrotic processes cause an alteration in blood proteins making the red blood cells stick together, causing them to become heavier and more likely to fall rapidly. The faster the erythrocytes fall the higher the ESR level.

The normal range is different for men and women – for females, a normal 'healthy' range is between: 0-20

So, before treatment my ESR rate was 130, signifying that there was definitely a moderate to significant amount of disease within my body. But you would not believe the news I received today.... After one infusion, a week later my ESR level was at a 5! A NORMAL range! This test does not ultimately tell us for 'sure' what is going on specifically with my disease, only a PET/CT scan will do that. However, this is REALLY good news for a small blood test, it alludes that although I haven't had any horrible side effects... that this treatment, is definitely doing its work on the cancer.

For now, we hold onto these good moments, and just keep on keepin on..... (while smiling!).

Sending Love,

B!

Blue eyes...

2010-03-27T11:04:00.002-04:00

First SGN infusion...

The SGN-35 went as smooth and as calm as I am in this picture just resting. I even feel a bit better after the infusion, and my eyes seem to be returning a bit to their normal hue of blue. As you can tell, I feel as I'm barely waking out of this bad dream, and I don't want to get my hopes up (too high).

But after the infusion on Thursday, I did not have any adverse reactions, nor more fatigue. We hold onto this. And hope, that this will be a small turning point for some healing in my body and my mind.

Here's to more sunshine, and more blue.

B

Preparing for battle.

2010-03-22T10:15:00.002-04:00

The last four months have felt like such a whirlwind, when people ask how I am these days I don't even know how to answer. I have been in four different hospitals, with lots of oncologists, and zero answers.

But now, it is up to me. One of the biggest tools for treatment is your mental state. Mine has been pretty tainted and shattered the last few months, but unfortunately, that can't be an excuse any longer. I begin a new treatment on Thursday, and I have to be ready.

My body is still weak, so my hope is that this will be an 'easier' treatment than my past clinical trials. I can hope, right?

To kick start my week, the vote is in and the legislation has finally been passed for the health care reform bill! I'd go into more detail this morning, but I think Hillary does a pretty great job putting it in a nut shell. For me, it basically means when I graduate I won't be discriminated against for having a pre-existing condition, but it also helps me in other area's too (capping on health care, Medicare part D which I'm struggling with right now) But, Hillary explains it in her blog, read it, be as thankful as I am. It may not be affecting your daily life, but soon, it will be affecting mine.

[Edit to add: a dear friend of mine directed me to this website, it definitely explains this bill in an easier fashion you can read this legislation, here.]

Normally, I have a huge fire burning at this point before a treatment. But because of all the sickness, and in and outs of the hospitals. Mine is dimming a bit. No worries -- it's still there. I still want to fight. I'm still here. My goal is still to move back to Boston as soon as possible and continue my program. But if there was ever a time when I needed some cheerleaders -- this week would be the week.

The calm before the storm is here, and all I can do now is focus, keep myself cenetered, and tell myself that this will work, this treatment will work, and these symptoms will fade, and this is a good choice.

Here's to good choices, new treatment, and more positive changes...

Cancer must be the answer.

2010-03-16T23:26:00.000-04:00

When doctors can't figure out what is going on with you, and you are a cancer patient.

Then, cancer is their answer.

Who KNOWS what is going on with my body. But, no one got to the bottom of anything this week, except that my red blood cells were too low (caused the fainting). So, I received more hydration, blood, and time without dogs barking!

I'm finally home. They put me on an anti-biotic that I was on the last two times I was admitted to the hospital, and will be on this drug until my trial starts on March 25th. While on this anti-biotic, I haven't thrown up and haven't spiked a fever higher than 100.

So, there's no infection, but the anti-biotic works? I have no idea. All I know is that cancer is the answer for all my doctors, and for now... I just nod my head and agree, what else is there to do? I start treatment within two weeks, our hope is obviously that the more damage the SGN does to the cancer, these symptoms will go away for good.

So yes, that is the date. Next week we go to NY for testing, and my 'starting date' for the SGN-35. The first day of SGN of this phase requires a twenty four hour holding period. So, I am admitted Thursday morning to the hospital, receive the drug in the morning (30 min infusion) and then, blood will be taken every hour on the hour for twenty four hours, fun huh? :)

After the twenty four hour holding period, a nurse will then come to my home in PA every other day and take blood until my next infusion (April 15th). Unfortunately, I won't be going anywhere between infusion one and infusion two because the nurse has to take this blood at a very specific time, every other day. Then, the second infusion is another twenty four hour holding period in NY. And again, the blood work happens again until my third infusion. Finally after infusion three -- no more holding periods or blood draws.

We will have to be in NY once a week for the first six weeks, and then after the six week period is over I will only return to NY on infusion days (once every three weeks).

I think that's enough information to throw everyone today. A lesson in side effects will come up next, I know, I know, all very exciting... try not to jump off your seats! :)

I also received some very special goodies from wonderful people for my birthday.
I'll be posting pics of those gifts soon, so you can all see the amazing people who are in my life, and continue to cheer me on, every day.

Sending you all Love,

B

The devils are back.

2010-03-12T08:39:00.000-05:00

This week I was readmitted back to Upenn, it was ultimately my decision but after I fainted and almost brought down some kitchen chairs on top of me, I thought it was for the best.

fevers, vomiting, coughing, fainting, weakness...

Once again -- no answers.

What a great birthday, huh? Happy 26th to me.

- B

Beat up.

2010-03-08T15:37:00.002-05:00

I am trying, so hard to get out of this 'slump.'
Where is my 'rebound' button when I need it? I need it now.

You ever feel as though, -- when it rains it pours.

This is a post about health insurance, and me feeling overwhelmed, and helpless.
How are people suppose to fight when they have to constantly pay millions of money to their health insurance? In addition, how are they suppose to fight when Medicare is only offered to those who had been previously employed around my age (thankfully not me, since I took a job right after college).

How are we suppose to survive?
We found out recently that my 'plan' was not in fact what I was informed. The 36 months of coverage, was actually 18 months, and now I feel like I've taken a few punches to the stomach. Actually, it feels like a whole football team just kicked my butt, and then took a few bats to the stomach.

A stomach in which I, am never hungry or thirsty, and I'm just trying to survive.
Although we have a month to figure this out, I am upset, angry, and sad that this is what fellow survivors have to deal with on top of trying to stay alive.

I am beat up.
Maybe the health insurance companies know it. Maybe someone told them.
Because at this rate, how are we (cancer survivors) who don't have any coverage, or long term plans because they have a chronic cancer, suppose to survive? How are we suppose to keep going, when we have to worry about COBRA ending, and Medicare not being able to cover the amount of prescriptions that I need. I'm no millionare here. Trust me, most cancer patients aren't.

I ask you if you are to comment on this topic, please don't tell me how to handle my policies -- I have family and myself attempting to figure this out. I just needed to vent. We did and are doing the best we can, no one has any idea how hard all of this really is. No one except my fellow, rejected-health care plan, warriors.

Hopefully that 'rebound' button will show up soon, it would be nice..

Good Scans, Bad Fevers...

2010-03-01T20:30:00.000-05:00

I appreciate everyone's patience, I've slowly tried to sort things out in my mind before I write things down for everyone to read. So, here is the deal.

Last time I wrote, my fevers were subsiding and we were heading to New York to visit Dr. O'conner. I felt GREAT, we left at 10:00 am for NY and did not return till midnight that night. It was a long day to say the least, but I received great news after my scan.

Everyone knows cancer grows, after two and a half months I did not expect a ton of growth but my moms and I definitely expected something. After an hour sitting and discussing future treatments with Dr. O, I finally asked "Well! What about the scan?!" He smiled and said there was absolutely no growth in my disease, in fact, some of the tumors had slightly (ever so slightly) decreased in size. It makes absolutely NO sense medically or rationally -- but hey, we will take this one. After he released this information the moms and I were in total shock, we didn't even know what to do with the information. Dr. O attributes this 'odd' scan to the SAHA (the drug I was previously on).

This is what I hold onto now, remembering how deathly ill I was those few weeks in the hospital, that this drug did something for me, and its holding my disease, this means my next treatment could really attack my cancer if it's not moving -- these are all good things, this is the silver lining. this is the silver lining. this is the silver lining...

Unfortunately, the trip to NY was exhausting and for a patient who had previously been running 103 fevers the previous two months, stood and talking, and exposed myself for a solid day on trains, cabs, and in Dr. O's office, the next day... my horrible symptoms of fevers and vomitting returned. Which is why you have not heard from me.

Usually it's no news is good news, but once again I've been trying to recover. The 103 fevers returned around the clock, the vomitting followed, the fatigue followed that. Of course nothing showed up again on cultures, x-rays, or any other scans and we knew since the scan revealed no growth that this was not the cancer doing damage. Once again, I was put fluids, IV zofran, anti-biotics, , and I am at the end of my course, thankfully, I'm back on the bike, the fevers once again have stopped along with the other symptoms. We hope, hope, hope, that none of these return after the anti-biotics and fluids are discontinued.

Honestly, we're all tired. The fevers take so much energy, and attempting to put on calories at this point pretty difficult -- but hopefully we've seen the end of the fevers, and the moms are constatly trying to plump me up. I feel strong, my worst fear however is just the return of this infection/virus or whatever it is that was inside me for so long.

Bottom line, we have decided the best treatment for me after talking with Dr. O'conner for over an hour during our consult. After reviewing my options from Upenn, Dana Farber and NYU, SGN-35 is on it's last phase before it will (hopefully) be FDA approved in 2011. There are a lot of details to this treatment, this phase differs drastically from other SGN phases because they need to postively put this together perfectly so it CAN be FDA approved -- this means more monitoring, more blood tests, but this also means, it is highly unlikely that things will spiral out of control like the last trial.

We're shooting for a mid to late March starting date, and I will update again soon with side effects and treatment cycles on my next post. Again, this feels like it's been a long road... and we're all hoping for brighter days.

Hope all of you are keeping warm, as the sun finally melts the snow and begins to show its face more here in PA, I also hope to be back up and shinning very soon.

Sending Love,

B

The sass is back...

2010-02-11T21:58:00.001-05:00

My infusion nurse told me my sass is back this week. compliment or insult? Because we love her, we take it as a HUGE compliment.

Steroids, and other anti-biotics have been taken - I also have great counts, no fevers, or other symptoms.
So, can we say REBOUND!?

I've been going on the bike, eating, gaining a few pounds, talking on the phone again, and hopefully starting yoga next week.

I am far, far, far from 100 percent or near my goal weight. But my head is back in the game, my voice is filled with a bit of hope again, and I feel the fire. We heard options from Upenn last week -- the snow kept us from NY this week. But, next week we visit Dr. O with a consult. Then put our heads together, to make a decision for the next treatment.

It's been an incredibly bumpy, hellish, rocky road the last three months -- but, I think I'm back?
for now at least, back for now :)

B

Edit to Add: Although I am on the up-swing, I ask you to send thoughts and prayers to another Hodgkin's warrior, Jeremy who's disease has swerved out of control, and he is now in the hospital with his wife, Maggie. We hold this family and their two children in our hearts during these next few days...

Baby steps..

2010-02-06T17:07:00.001-05:00

The last three weeks have been some of the most difficult I think I've had to experience physically and mentally. But ever so slowly, I feel parts of 'Bekah' returning.. which is always a good thing.

Last week we visited Upenn, and had a consult with my transplant oncologist to hear about options in PA. It was a decent visit, with somewhat too many options to choose from.. but we're not jumping onto anything just yet. The visit was also a blessing because, after much coughing, fevers, vomiting, and a lovely bunch of symptoms. I was prescribed anti-biotics, a low dose of steroids, and more meds to make my body relax.

Within a day, my coughing stopped, fevers haulted, and I can breathe again. This obviously could be masking B symptoms. I was able to try the aleve thought-process before the consult, and the fevers did not stop. So, we're hoping that this is more or less due to me not being mobile AT all in the hospital, and a culmination of other things... at this point it looks like we'll scan soon to see where we are, and take it from there.

The moms and I also scheduled another consult with Dr. O next week, to check in and again, hear more options.

For now, I feel as though I'm ever, ever, so slowly coming back from a huge wipe out.. both mentally and physically. But, at least I'm not headed in the other direction, I was even able to gain 2 lbs recently. (We cheer for that here). The good thing is, besides the steroids making me absolutely insane for a week -- all other symptoms have decreased in some capacity. What I hope to do in the next month again, is just recoup as much as possible as the cancer has obviously grown and we'll need to move to a new treatment.

The important thing though, is I'm strong enough for this next treatment. Mind and Body.

So, that is where I am at...

Baby steps, right?

Sending love,
B

Home

2010-01-27T10:22:00.000-05:00

Late Monday night, I finally came home.
Wish I could say I was feeling better,
but the truth is Upenn could not figure out what is causing my daily fevers, or other side effects.

For now, I'm home in bed, with home infusion care helping with fluids
and good home cooking.

Next Goal: Recovery

B

going crazy

2010-01-17T20:02:00.000-05:00

After four/five days at the Doylestown Hospital in Pennsylvania. Tons of antiobitiotics, fluids, and everything else we've preveriously done in NYC. I am a little bit at the end of my rope. Doylestown, does not feel as they are capable to 'handle' my case, so tomorrow morning me and the moms will transfer over to Upenn Hospital. Hoping to GOD that this is figured out.

Fevers are spiking once to twice a day, vomiting, and still loss of weight. Let's hope my transplant doc (Sunita Nasta), the oncologist I love the most will find where this infection is.... and destroy it. Nothing is turning up in cultures, there was something abnormal in another tests, so we're hoping this is the answer.

As for the future? There is no way I have the energy, stamina, or cognitive abilities to return to school this semester. We have no idea when this will end, or when I'll be out of the hospitals... We have no idea when I'll fully recover.

So on the negative side: I lost out on a semester possibly
Good side: I bounce between MA and PA, maybe down to FL and live? for four months before the summer semester starts.

I will find the silver lining. just try me.
Meanwhile, I'm here in a small room, going absolutely crazy

(PS -- I have had millions of calls, texts, emails, and other forms of contacts.... i have yet to return any of them, please be patient with me. when I'm back on my feet, you'll know what's up.)

Love ya,

B

Pulling the plug...

2010-01-12T14:47:00.000-05:00

After another week of vomiting, being bed ridden, losing weight, and losing some of my mental stamina, I decided to pull the plug on the SAHA. In general. I have been in bed since mid November, missing lots of hours of my internship, and the last weeks of my semester classes.

On top of that, I've bounced between Dana Farber Hospital, NYU hospital, and Doylestown Hospital. Although I did have a response to the drug, there comes a time in many refractory patients lives where they have to ask the question - to themeselves:

Do I have a quality of life here?

The truth, the reality is, we know I will never be cured. So, we try with all our might to manage what time I have left here, with specific treatments. To me, laying in bed, vomiting, watching TV everyday, and sleeping 24/7 is not a quality of life.

My weight is also tettering at around 100lbs which is scary in itself if I were to have some kind of infection, I hardly have any reserves or anything to fight back with. So, the decision was made yesterday, that I will discontinue the Verinostat (SAHA), it's even hard to believe in 2 months I lost 20 lbs -- to me, it makes the choice a lot easier.

Honestly, I'm weak in many ways right now physically and emotionally. But will hopefully have enough time to rebuild my body for the next tretment (SGN-35), which poses some pretty horrific side effects as well. SGN has a side effect known as neuropothy, several of my friends who are on it now can hardly feel their feet, legs, or hands, and are almost -- asking to be put in a wheel chair.

Slowly, I'm learning, that I'm losing my motivation for treatments, and pondering how much more my (our - other refractory folks) can take. It's sad that when I'm not on any treatments, I feel absolutely wonderful. But, once I have to take a dose of something, my body violently reacts to it.

I know I am here, I know I should be thankful.
But how far would you go, to stay alive?
How many drugs would you take, just to lay in bed everyday?

These questions unfortunately keep arising.
So, that is the news for now. Off the SAHA --
onto the new treatment most likely in late February or March.

Hope you all are keeping warm.

B

Quickie

2010-01-06T20:03:00.002-05:00

- Saw Dr. O and team today, received fluids, long day, but productive
- It appears vomiting is under of control, and we have a firm grip on 'plan nausea.' For this cycle.
- I start cycle three tonight. send good thoughts.
- There was a shift in drugs due to my body mass (now one hundred and five pounds).
- I am by no means anywhere near sixty percent back to normal.... but, I'm slowly starting to rebound. slowly.
- My family is probably the best, strongest, most incredible family I've ever watched in action.
- I am so, so, supported and grateful.

Let's hope for a smooth cycle.... three was always my number on my basketball jersey's when I was young, it's gotta be lucky ;)

Sending Love,

SAHA update

2009-12-28T18:04:00.000-05:00

Hope everyone had a lovely holiday. As for me and my family we spent the week of Christmas in NYU hospital as I was admitted after my scan on the 21st due to dehydration, off liver enzymes, weakness, weight loss (107lbs),vomiting, high kidney functions and the list goes on.

The experience at the hospital to say was incredibly horrendous: our first night our floor did not have any heat, therefore all of us sleeping in our coats, hats, and gloves. On top of it, we had no idea we were going to be staying at the hospital for a week which equals no clean clothes, toothbrushes, or even showers in the rooms. Personally, I'm going to erase these memories from my mind, and focus on the one major positive that did come from going to New York this week.

The scan with this drug reported a thirty percent decrease in my disease. So, obviously, we cheer for that.

After fluids, antibiotics, head scans, liver scans, whole body scans, and running of cultures, NYU finally released me. I'm home for now, trying to rebuild my body. Today is the second day that I haven't had a fever, and the first day I haven't thrown up (lets keep our fingers crossed). I go back to Dr. O'conner on Wednesday morning to hopefully clear up this entire mess. I've been off the drug for about two weeks -- I'm allowed one more week off.

My hopes? O will help me figure out how to have quality of life on this drug since I've been bed ridden for almost two months. That there will be a dose reduction, somewhere since I've lost so much weight. And that somewhere along the line.. I get to return to my life in Boston.

Hope with me.

Sending Love,

Welcome & Thank you...

2009-12-11T13:23:00.003-05:00

Now that I've switched back to private, I have the wonderful opportunity of being more myself, as well as sharing more detailed information. I know you are all excited :)

Before I continue though, I just want to thank all of you who did write to be added, and the incredible and beautiful support you sent through all of your e-mails. I am always, always, blown away by how many people are out there that share a connection with this disease, or just simply are cheering from different parts of the country for successful treatment. I thank you, I'm grateful for you, and all of you, your e-mails, comments, phone calls, gifts sent in the mail (JessieO), and heartfelt words of encouragement. When I feel as though I'm in this dark place -- and I know there is light somewhere, it is always the kindness of others that helps me see past everything that is blocking my vision. So, again, thank you. I wish I could personally write back to each one of you... some day I hope to, but please realize your small act of kindness truly helps me focus and dust myself off.

As many of you have suggested, I am trying to just 'be' in the next few weeks. I am focusing on rebuilding my strength emotionally and physically, and hope that the new year leads to a more balanced life-style and mindset. I hope it is for all of you as well...

The next news (scans) will be the week of December 21st, and we're obviously hoping for good news that this new clinical trial is working -- but if not, we will figure out something else. However, we'll cross that bridge when we get to it. Luckily, classes end next week, and although I'm sure I'll have to take some extensions at this point, I'm okay with this and feel the need to pat myself on the back for still standing while juggling four classes, interning, and treatment.

Lastly, for a treat. One of my very favorite Lesley loves sent me this a while ago, but, it just seems like a perfect letter to share with all of you. Plus, it makes me smile. This is F. Scott Fitzgerald and a letter to his eleven year old daughter during summer camp. Hope you enjoy it.

Dear Pie,

Things to worry about:

Worry about courage
Worry about cleanliness
Worry about efficiency
Worry about horsemanship
Worry about...

Things not to worry about:

Don't worry about popular opinion
Don't worry about dolls
Don't worry about the past
Don't worry about the future
Don't worry about growing up
Don't worry about anybody getting ahead of you
Don't worry about triumph
Don't worry about failure unless it comes through your own fault
Don't worry about mosquitos
Don't worry about flies
Don't worry about insects in general
Don't worry about parents
Don't worry about boys
Don't worry about disappointments
Don't worry about pleasures
Don't worry about satisfactions

Things to think about:

What am I really aiming at?
How good am I really in comparison to my contemporaries in regard to:

a.) Scholarship
b.) Do I really understand about people and am I able to get along with them?
c.) Am I trying to make my body a useful instrument or am I neglecting it?

With dearest love,
Daddy
(August 8th, 1933)

Sending Love,
And a very Happy Chanukah to all my favorite jews :)

B.

I don't feel strong, when my body feels weak.

2009-12-08T15:26:00.000-05:00

I think most people can sense by my writing that I haven't been in the most 'joyest' of moods recently. I know that's okay, but it's something that I try to avoid. I always believe that positive thinking and our mentality is a huge part of fighting this battle.

This month I was losing. and I'm trying to come back.

I had too much on my plate. I had too much on my plate for a normal 'healthy' person. Yet, I continually attempt to live a superwoman life, trying to prove to others and myself that this illness does not affect me.

Well, unfortunately, it does.

I've been in and out of the hospital for fluids and blood. Not wanting to take care of myself as much as I normally do, and detesting that I have to be on a trial again, seeing my weight just slowly fade away. It feels as though all the hard work of my summer and fall, eating, and yoga-ing has just been flushed down the drain. I'm tired. I'm tired of traveling. My Hemoglobin is low. The fatigue is bad. And, I find myself just never getting enough sleep.

I hate to give into this disease, but I feel as though I've lost some of my spirit... somewhere along the way. I admit, it is usually this time of year, three years to my diagnosis during the holidays, right when the chemo started for transplant two years ago, and just about a year ago this month the last clinical trial whipped me so hard, I could not even get out of bed. The pattern is frightening, and the holidays are shadowed by these treatments, year after year.

The thing is, I'm trying. I'm battling myself, and trying to get into a positive mindset. Unfortunately, a lot of personal things have not turned out as I'd hoped (deaths, ending of a relationship, timing of things), and I am having to take extra time off of my internship because I need to really focus on rebuilding my body, eating, and drinking. Everyone else in the world seems okay with this -- except me. Why after three years, am I still insisting that I can do everything a healthy person does? Without any extra help, time, or accomodations? Why do we feel as cancer patients that we need to endlessly prove that we are the same as everyone else?

I feed poison to my body fourteen nights, out of twenty one days.

Do I get to feel weak already? Is it okay not to keep up with the healthy 25 year olds anymore?

Do I get to feel defeated and not want to DO this anymore?

It is such a difficult thing -- when off treatment, I am sky high happy and relish in the moments without chemotherapy. But, as soon as I begin a treatment, my mind follows the weakness of my body. If I am throwing up everyday - is this worth it? If I can't get out of bed to see friends and attend school or internship -- is this worth it? And finally, can someone please come here and tear up my superwoman cape because I am so tired of trying to be normal..

I would love any words of advise or encouragement, as I know I need to start thinking on a positive note or none of this will be successful in the interim.

Sending Love,

There ain't any candle left -

2009-11-22T15:13:00.003-05:00

Warning:
MAJOR KEVETCH:

Although I am incredibly, incredibly grateful for all of the things in my life. I seem to have been burning the candle at both ends, hard, and fast -- and lo and behold. There ain't no candle left to burn at some moments.

So, for the things that I'm grateful for and those that I'm struggling with in this new trial and this time of my life. I thought I'd share, because although most of my life I would like to think are rainbows and butterflies. It can be rough. We all know it. So here is the realist in me, coming out. It's important for other people who are survivors to know that even though you have a positive outlook most of the time. You're allowed to kevetch -- this is hard stuff, and... it's exhausting.

Things I struggle with:

- I need, NEED sleep. If someone let me sleep for an entire month, I would. The exhaustion of traveling, handing in papers, going to class, and being responsible for clients and internship is a never ending battle -- there is no end. Although the semester ends in a few weeks. I continue the internship with extra hours (the internship I LOVE) well through my winter break and through June. If you've been in the mental health field you know how much this takes out of you. I hate to admit I'm a bit burnt out with only four months in... but, I know now, I did not pace myself well enough. And I'm paying for it at the moment.

- I don't see any type of break. Like a good solid two week break of no class, no papers, no treatment/travel, no clients, no internship, no responsibility. It's not there, I'm not sure if it'll ever be there again (which scares me.) I know I'll be in this internship though a good portion of the summer, and three summer classes... with treatment? I just don't see any time to recover, to bounce back one hundred percent. I'm grappling to find ways to rejuvinate myself, to get myself going again, to recharge myself. I feel as though I lost my battery and no one can seem to find the another one to put in me, so I'm running on fumes until I figure it out.

- I don't have enough hours in the day. Between traveling for treatment, heading to one part of the city for internship and other for school at night.. I'm lucky if I eat, let alone see friends, enjoy yoga, or relax. Where is my free time?

- I've lost my fire. I'm going hard. I'm the first one to admit this. But all the while, when people ask me if I'm doing what I love, there is a hesitancy in my voice. I remember this phase, the phase when I student taught five days a week and had classes at night and knew this would be the most work I'd have to do at the same time in my life. I'm at this point now in my degree. Stretched between the real work and the classroom work and knowing that I will never have THIS much on my plate again, but wondering, how the hell do I get through this? It's like you're being stretched in 5 different areas between four professors, groups for class work, supervisors, clients, co-workers, it's insane. I'm not sure how people truly function in this kinda of twenty-four hour work mode.

- I haven't learned how to leave work, at work. Or school at school. I'm thinking too much. And my body craves yoga and is threatening to end my life if I don't return to the studio some time soon -- but when? When will there be time?

- To top everything off, and most of the underlying sadness and exhaustion is from losing people. These last few months we did not only lost Eric and Adrienne, but my uncle suddenly passed away, leaving behind my five young cousins, his wife and the rest of our family. And this month is a year from when my dear friend Scott Reeder (another Cancer survivor) passed away... thinking of those memories. It's all very difficult. And although I thought I gave myself some time? To grieve it was not nearly enough. It's all catching up with me. Which makes complaining, burn inside me -- because, at least I'm here. At least I have room to complain, right?

Grateful:

I am basically grateful that I get to complain about all of these things. I'm grateful that I'm complaining about a busy schedule opposed to no schedule, that I have clients opposed to no clients. That I am having a life aside from my illness. This irritating illness that sucks out so much energy from me I wish I could strangle it. I hate coming to a certain point of the day, knowing I have nothing left because of fatigue, low, energy, or that I haven't kept myself hydrated enough. I hate how I can't make time for friends, because eating and sleeping are more important right now.

Above all, I'm grateful that I am a type-A perfectionist who thinks I should be able to do all of this without any excuses, extensions or help. I know I wouldn't be this far without my stubborn-ness.

I am grateful for my family, friends, and general loves of my life who understand me and don't need to push any further because they know all of this would come out... if they did. And it's better to keep it contained.

I'm grateful for a new-found therapist who I hope can handle all of this.

I am grateful for lots of things. I am.

I just need a new candle, or battery, or something...
Maybe I'll get one for the holidays?

I guess I can only hope.

Sending Love,
B

New Treatment. New Battle. Here we go!

2009-11-12T20:24:00.001-05:00

This will be short and sweet. After a few false starts to different treatments, I have begun the SAHA + B12 trial that Dr. O'conner at NYU is in charge of. There have been good to decent responses, and in his eyes, this is a good drug for me at the moment.

The drug of my choice: SGN-35, will not be open in NYU till February or later. So, the SAHA will bridge me (hopefully) till we get to the spring.

So how's the cancer? Eh. It's not that great. But, I'm still here, kicking butt, four classes, internship and all. Let's just say, it's spread. a lot. And we hope it shrinks. a lot.

So schedule. Oy vey, is this one gonna kill me. Try fitting four visits to NYU in your overloaded Master's level semester? In november, I see Dr. O and Zain on November: 11th, 16th, 25th, and 30th.
So send some good vibes those days, as most likely I go in on a 5am train, and head back on a 5pm train all in one day.

After that month. I come back once every three weeks. (not too bad)
We scan on December 21st, if it's good. It's good.
If not, we have a back up plan. so, no worries.

The drug is oral. So, ten pills a day for two weeks. Then one week off. Not too shabby.
So, let's hope for little to no side effects, for me to make it through this semester!

And for smiles, I'll leave you with some great pictures of the last few months with no treatment:
Hope you all are well.... and are getting ready for my favorite holiday ever. :) Turkey Day!

Crab shack with favorites, and my little six foot brother :)

Coast Guard Beach with Darrel

Seafood Dinner with D

NYC with the ladies

Feasting in Central Park

Peace in NY

Lock love at Emily and Miguel's Wedding

Sending Love!
B

The answer is Adrienne.

2009-11-01T00:37:00.000-04:00

A lot of people have been asking, calling, emailing, stalking :) me about what the next steps are. Just to let everyone know, there is a plan. I'm just not ready to talk about it yet.

There is a huge hole. In the Hodgkin's community. And, I'm just not ready to focus on me yet.. and I'm not sure how soon I will be able to. When I think of my next treatment, or my doctors, or school and treatment, my thoughts somehow or another always find their way back to Adrienne. Although I can't really figure out where I am in this thinking process, I know, that there are a lot of things... I want people to know about Adrienne. Things and ways that don't necessarily have to do with cancer and how she lived with it for thirteen years of her life. Yet, were so softly interwoven between herself, the disease, and her life -- that all of it needs to be mentioned. Somehow. So, forewarning: Right now, I'm not ready to talk about treatment. I will, soon. But, when you ask me how treatment is. My thoughts and heart, go directly to Adrienne. How, she should still be here. How, in one way or another Alison and her saved my life. How, Adrienne has probably saved more lives than she could've ever comprehended. And, for that, and for so many other reasons. I wish she was here.

Adrienne showed the Hodgkin's community what to do, and what not to do. And because of her actions, she saved lives. Not many other people get to say that. On top of it all. There were so many other things about her, that... weren't shared.

So, these are the things, I want to share with you about Adrienne. Things that I miss. Things that I will miss. Things that, stick out in my mind when I think of her, power walking through the blocks of New York City, and the moments in Miami where I found out she was a shopaholic at heart. These are some of my thoughts about one of the toughest girls, I know I'll ever meet in my life.

My thoughts of Adrienne...

The phone calls. I think on more of a weekly or monthly basis these are the times I will miss hearing her chomp on the phone the most. When, I call to ask Alison how her and Adrienne are doing, and Alison describes symptoms or what their next steps are, and hearing Alison say "And, we're trying to get more weight on her... she's eating... an english muffin, or matzoh ball soup, or something else." Then she'd put A on the phone, and sure enough, confident, and self secure, Adrienne would assure me that things really weren't that bad, and she was trying to just figure out how to fit a ridiculous amount of treatment or doctors appointments in between classes. It was here, I took Adrienne's lead, and applied it to my own life. People wonder how I do it. They wonder how I am doing four classes, twenty five hours of internship, relationships, ect. They wonder? I want to answer with: Adrienne. Adrienne is how I know I can do this. Because, across the country chewing on an english muffin, she was doing the same damn thing.

Adrienne always wanted to do things her way -- the right way :) I was never dishonest with Adrienne, and I believed she was always a 'give it to me straight' kinda attitude. From her discussions on Psychology and wanting to get a PhD the RIGHT way :) to, eating Sushi -- not fake sushi, like I ate. But REAL sushi... something, outside of the 'california roll safety zone.' Adrienne always spoke her mind. And, she told you straight how she felt about a person, food, or the path she wanted to take and how she wanted to take it. Although I may not have agreed with everything A said, she had more chutzpah than most people I know have in their pinky finger. It was amazing to watch, and beautiful to listen to. There aren't many other young women out there that I know, were/are so outspoken. But, Adrienne never felt as though she had to back down, once her mind was made up. I always knew, her honesty would be right there with her, everytime I saw or spoke to her.

Adrienne was a foodie. A foodie, that I probably can't even justify or articulate into words because, I am not even close to her or Alison's level of knowing what good food is or what resturants to try. Although I only ate a handful of meals with A, I always knew that between her and Alison -- I would be eating something great, new, and at a place I'd never forget. I treasure those meals, and remember them more than most, when I've eaten with other people. It's nice to associate memories of good food, with fabulous people. I wish everyone had the opportunity to do this...

Adrienne was a babe. More specifically she was a nerd and boy magnet. I loved this part of Adrienne because, she knew. She knew what guys she didn't want in her life, and she knew what guys she wanted to stick around. And she knew, somehow without much wavering, how she wanted to handle them, school, and this disease. It was amazing watching and hearing her date young men, their reactions, how she thought some of them were just plain 'duds' and how she wished some would get their 'acts' together, already! I loved that in the mix of all her treatment, school, and what some people might think of.. having the weight of the world on her shoulders, she was able to totally break hearts on the side too. I knew whenever we were able to talk about boys, I was in for a huge laugh.. She didn't understand most men. Just like the rest of us! But the ones she did, she held on to -- and seemed to make it very clear, she wanted more.. more of life.. more of challenging conversation.. and more of someone to mentally keep up with her. Because on top of everything else about A, she was incredibly intelligent and quick. And, those boys needed to be able to keep up with her, if they wanted to be in her presence.

There is more, much more.. but for tonight. I'll leave you with this. These are the pieces of a woman, that I honestly, did not know too much about, but knew enough to enjoy her. Knew enough to admire, and to base my actions on her actions. These are the pieces, I hope you gather, and think about, when you think about Adrienne. And when you wonder, how I've done this so far.. how I managed to create this life between the cracks of cancer. You'll know, the answer is Adrienne.

And for that, I will always be forever grateful.

Sending you love,

Bekah

Adrienne.

2009-10-03T17:28:00.002-04:00

Adrienne passed away on Thursday,
with her and Alison, being so very close to my heart,
at the moment I have no words.

We will all miss her dearly..
Memories of Adrienne

- B

Bad news bears.

2009-09-22T19:49:00.004-04:00

After a quick check up at DF, for a PET/CT scan to assure that the Doxil did it's job, we were a little surprised by what the scan showed.

Unfortunately, after only a month off treatment -- I have lots of increase with more nodes, and disease above and below the diaphragm yet again, with multiple nodes ranging from 1-3.5 cm in diameter. I expected some increase, but not quite as quickly, as my disease is progressing...

So, alas, my fellow friends and family -- I will be returning to you all, and writing a little sooner than anticipated. During October I will be focused on finding a new trial (most likely in NY), and figuring out once again how to juggle life, class, internship, friends, and treatment.

Most likely the first week or two of November, I will begin somewhere, with something. So, stay tuned.

For now, I'm going to enjoy the next six weeks as best as I can. I can say, I am damn lucky, though on several accounts:

1) By the time I start a new treatment, I will have three months off from any drugs. That is a 1/4 of a year, and had an A-mazing time at that. I am so grateful that I was able to rebuild my muscle mass, find yoga, and get myself and my energy started up to enter in this new treatment.

2) There are a lot more options now, then there were last fall -- clinical trial wise. I am always, so, so grateful for choices and options.

3). My internship, supervisors, classes, staff, and peers are being amazing about supporting me through this next trial, while I attempt a 25 hour internship, four classes, a social life, and treatments. How lucky am I to be surrounded by people who understand, and help?

4). I'm alive. I'm here. I'm helping. I'm doing good work. And in general, I haven't been this happy in a while, now that I am finally back in the field, being with kids, and sucking all that i can out of each and everyday.

I know some might be disappointed by this news, as we did think I would be able to take off till mid/end of December. But, hey, at least I got some time off, and at least I'm here, with options in front of me, enjoying my life. And for all of this, I am grateful.

If time allows, please visit Adrienne's blog again (post below) to continue to send prayers, positive thoughts, and warm, comforting vibes to her and Alison as they are fighting tooth and nail for A's counts to come up, and chemo to begin working on these tumors.

Thinking of you ladies - everyday.
Thinking of all of you, lots.
Hope everyone is doing well.

Signing off till late October,

B

Love for Adrienne

2009-08-30T08:05:00.005-04:00

Although I claimed to stay away from my blog and updates (and I will, for myself), I needed to take some time today to ask you all a favor...

A dear friend, Adrienne, (the beautiful woman in the middle of this picture)

....who has been the inspiration for my treatments in the clinical trial world, and her mother, Alison who has been a huge medical advocate for me and some many Hodgkin's patients are having a difficult time right now. Although Adrienne has had Hodgkin's for more than half her life -- She is leading a wonderfully colorful-good quality of life (just as I) thus far; therefore, when she was recently admitted to the hospital and now is in the ICU, it was a complete shock to most (especially Adrienne herself, and her family), as we were all just power walking through NYC together two weeks ago.

I ask for you, today, with everything you have. To please send your love, thoughts, and positive prayers to this amazing woman. She is not only a dear friend, but a pioneer in the world of Hodgkin's Cancer treatment everywhere. As she has taken the first steps... for all of us. Into new treatments, new trials, and a new-possible way of living.

And if you have enough love, to give more today -- please stop by her blog. Click HERE. And leave Adrienne and her family, a message of support. Adrienne and Alison are warriors on their own, but even warriors now and then need our love and positive thoughts of support.

Again, please continue to check Adrienne's blog for updates, as they are taking things a day at a time, and our hope is she will be out of the ICU and home with her family, as soon as possible.

Love,

Bekah

Hiatus

2009-08-18T22:50:00.005-04:00

It has taken, a heartbreaking passing of another hodgkin's warrior, to take some pause and put some of my thoughts into perspective....

Eric, passed on August 9th. A kid who completely blew us away with his smile, and his legacy of living life to the fullest.

In addition to Eric's passing, and my oncologist team confirming, that my disease is small enough to receive a break from treatment. I decided to slow down even more, smell the roses, the sunflowers, the raspberries, the mangoes, and the classroomwalls of Lesley University, and my social justice internship... and put cancer, treatment, and hospital visits, on the back burner for a few months. And focus appreciate, every thing/one else in my life, instead.

Which in turn, gives me hope that you turn to those you adore-

things you love to do-

and appreciate the gratitude you have in your heart of your life.

I've decided to fully dance on the edges of new beginnings.

And for the next few months, that is what I plan to do.

So, farewell for now -- I am taking a small hiatus from my blog.

But will venture back here, to share all of my new beginnings (most likely a new treatment as well), come the early months of Winter.

Sending each of you laughter, strength, integrity, kindness, wisdom, empathy, excitement, compassion, tolerance, euphoria, perspective, warmth and patience.

And above all. Love.

Bekah

True Beauty, Never Hurries

Check-in, Texas Style!

Destination: Texas, Frequent Flyer Miles needed!

Goodbye 2011, Hello 2012!

My Decembers.

Beautiful is such a certainty,but uncertainty is more beautiful. -Wislawa Szymborska

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

-----

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.

Texas Infusion 2011: Complete!

Texas, Round One - Complete!

Treatment, Hotels, and Flights -- oh my!

One of the Lucky Ones

Celebration-Rollercoaster

And so it goes...

Inside the mind

Life-force

Shedding of Skin

Check, Check & Double Check.

And just like dust, I rise.

Relapse.

Catch me if you can...

Hearts are breaking around the world for Anne

It's nice to laugh again.

In love, with life.

Surreal Sweetness

As the week unfolds...

There are no words..

Lighting a candle for Kirsten

New Clinical Trial: for EBV positive tumors.

So this is the new year...

Milestones.

Drink it up love, drink it up...

Thank you & Private Settings.

Tears and Scans

Rise

The Unwritten Code

I live for them.

Who feels amazing?

No news, is excellent news.

l'arte d'arrangiarsi...

Humbled.

Rebound.

Lost.

Eager Beavers -- this is for you!

Farewell, SGN...

Work with me.

How do you live with chronic cancer?

Explain the pain:

'I feel it all. the wings are wide.'

a new start..

Grateful. for. the. fam.

Glorious.

I'll take it!

Results

Oy Vey.

Update

Big News :)

Blue eyes...

Preparing for battle.

Cancer must be the answer.

The devils are back.

Beat up.

Good Scans, Bad Fevers...

The sass is back...

Baby steps..

Home

going crazy

Pulling the plug...

Quickie

SAHA update

Welcome & Thank you...

I don't feel strong, when my body feels weak.

There ain't any candle left -

New Treatment. New Battle. Here we go!

The answer is Adrienne.

Adrienne.

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

-Wislawa Szymborska