Drink it up love, drink it up...

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

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

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

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

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

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

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

b.

Thank you & Private Settings.

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

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

• Email me at: RebekahFurey@mac.com

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

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

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

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

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

Sending all of you love,
B!

Tears and Scans

I am in sweet
sweet --
 beautiful,

Remission.

(complete remission)

for the first time in 

three years. 

B.

Me and  Max are happy campers! Go celebrate!

Rise

To those I love:

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


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

The Unwritten Code

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

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

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

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

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

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

These positive thoughts and love go out to:

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

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

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

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

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

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

We're rooting for ALL of you, 

Sending love to each and every one,

xoxo 

B

I live for them.

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

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

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

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

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

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

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

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

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

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

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

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

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

- B

Who feels amazing?

this one!

Happy Fall, lovelies! 

xoxox,

B

No news, is excellent news.

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

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

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

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

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

xoxo
B!

l'arte d'arrangiarsi...

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

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

Sending love to each and every one of you,

xoxo

B!

Humbled.

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.

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.

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!

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...

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.

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?

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:

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,

B!

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

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..

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,

B!

Grateful. for. the. fam.

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!