Smooth sailing...

Hey all -- Still here =)

Treatment has been uneventful thus far(thank you, all higher beings up there!). However, I've had a cold for the last three of four weeks, as my neutrophils kind of bottomed out a bit more than we wanted, after the first infusion. But, the cold has honestly been more irritating than harmful. I've been coughing up a storm through dinner conversations and classes -- and feel horrible about it. But, I've gotten through my July weekend classes just fine... and have been enjoying time with friends, and a new found love of Dahn Yoga.

I was able to drive myself to and from chemo during this infusion, with no rough side effects to speak of. So far -- very smooth sailing. I've finally gotten my cough/sinus/congestion under control from anti-biotics, and other sinus relievers. And, was able to enjoy a weekend without class, great college friends in the city.... and tons of sunshine!

As for the medical side of things. Some important appointments have been scheduled: A CT scan before my third infusion (to see if the Doxil is doing any damage to the cancer). As well as an appointment/'check-in' with Dr. O'Conner (Hodgkin's specialist in NY), to review what I've been through this year, and see what else is out there for future treatments. This will all take place before a-hopeful third infusion of Doxil on August 11th.

But mostly, I am enjoying the slow & calmness of summer, before my fall kicks into gear mid-august with my internship, and classes to follow in september. Thank you again, to family and friends who have called, sent words of support, FLOWERS ;) , and just tons of love and questions my way to see how I am doing. I appreciate every single one of you. And, just could never thank you all enough to help me adjust to this new treatment.

Here's to all of you, for making me smile... so wide.

Sending Love,

B

Thank you, Doxil.

After Tuesday's infusion, I layed low for a few days. But, to be completely honest it was a painless chemo and I was up and at 'em again this weekend, celebrating the 4th -- just like everyone else =)

I don't want to jinx this treatment -- however, I think you can tell how I tolerated this chemo only a few days after my infusion on Tuesday. So, here I am with my beautiful friends Amy and Mandy -- we got a beautiful beach day and fireworks in at Mandy's Beach house in Rhode Island. It was a gorgeous weekend.

Here's to normalcy, despite treatment!

Thank you for the calls, emails, and words of support and concern.

And thank you Doxil, for being so kind.

Next treatment: July 21st.

Sending Love,

B

Blue eyes, you're the secret I keep..

It's all in the eyes. For most cancer patients. For me, I can always tell when my body is rebounding in some form or another by mine. The grey hues come out when my blood counts are down. And, like today, the blue-ness of feeling good, pierces through most pictures. I feel good. I feel ready.

In addition to my eyes, I'm at my peak weight -- 119 lbs today. Slowly, through biking I've been gaining some muscle. And, eating, eating, eating, to prepare my body for this next treatment.

Once again, I'm here.

Ready for battle.

Chemo begins tuesday morning, and a hopeful update for all of you, following.

Hopefully - with NO side effects!

b!

D is for Doxil (and lots of Damn hope!)

Now that my blog is private, it is easier to share specific details. And hope that you feel more safe leaving comments as well -- after teasing through many emails, I've only allowed two hundred individuals to view this site. So, here's the nitty gritty details of our next steps. (Disclaimer: This post contains lots of (medical information) and specifics, it can be overwhelming, take your time to read, think, and process -- I know it is a lot to throw at all of you, but felt you needed to know the details)

It was not easy heading back to Dana Farber after such freedom the last two weeks -- but, it's done now, and the plan of attack is in place.  Just to clear up some things. I was not formally thrown off the LBH589 trial -- but, would be come September.  Therefore, instead of starting a new treatment, new classes, and a new internship all in one month.  I took it upon myself to make the decision to start treatment now.  I have a light summer with classes, and lots of time.  And as some of you know I am the queen for horrible side effects. So, I decided (with my family) to discontinue the LBH, and begin Doxil as soon as possible.  This allows me two months to figure out when my blood counts will drop, how bad the fatigue is, what I need to take for nausea and GI issues, and anything else that decides to rear its ugly head. 

This is the right decision.  Others might try to squeeze out treatments and trials as far as possible -- but at this point in time, I need to have the control over my life, not my disease. During my first two treatments I allowed this disease to rule my life, my decisions, where I lived, and what I did. Now, I need to reverse it.

I have a life -- I am going to live my life, and THEN figure out how to fit the disease and treatment into my life. 

So, this Monday we discontinued the LBH. Which required testing on lungs, heart, blood, kidney function, and liver -- results show all normal! I even increased a bit on my heart levels -- as they are normalizing a bit more since transplant. All good news.

Now, the Doxil. 

Doxil is normally used for ovarian cancer -- but, there have been some research that suggests if Doxil is used directly after the LBH589 trial -- the lasting effects of the LBH plus the Doxil could contribute to a tumor response (decrease in tumor size).  This is what we are hoping for. 

The Doxil will be given on a twenty one day cycle. Meaning, I will have one, three- hour infusion. Then, I will have off for twenty days. This is considered cycle one. My first treatment will be Tuesday, June 30th. Treatment two will be July 21st. Treatment three will be August 11th. However, these dates are able to change due to side effects. Oh side effects! How I've missed you.

So, what are we actually looking at that can happen to me during this next treatment? Doxil is not considered that high in toxicity. I most likely will not lose my hair, or have tanked blood counts. But here are a list of what Dana Farber says I need to look out for:

Side effects of Doxil: 

*facial flushing, rashes on face

* low blood pressure

* dizziness

* severe tissue damage (if chemo leaks from infusion site)

* nausea (boooo!)

* vomiting 

* loss of appetite

* hairloss

* dry, itchy, skin

* GI issues

* blood/marrow suppression (low blood counts)

*mouth sores, mucositis 

And last and not least, hand and foot syndrome. The worst side effect that could occur, in my eyes. Hand and foot syndrome is the painful peeling of hands and feet, sometimes it will decrease within hours after an infusion -- others have had it on and off their entire treatments. Sometimes, lotion decreases the pain -- other times, people are unable to walk, use their hands, or even take hot showers due to the severity of discomfort, peeling, and pain. 

My oncologist says it is 'very unlikely' I will have hand and foot syndrome; however he has seen it. And, since I am the queen of side effects, I need to be prepared for all of this.  Not a pretty picture obviously, but something we have to do in hopes of beating back this disease.  In general, I could have NONE of these side effects, SOME of these side effects, or ALL of these side effects -- we won't know until the drugs hit me. (So cross those fingers!)

Now, to be honest with you about my cancer and its progression. None of this is alarming -- but, there are five nodes (tumors) we are looking at in my upper chest.  Although the LBH first, decreased them drastically, throughout each scan, they have been slowly, ever so slowly been growing.  At this point -- throughout the last year, I took it, because we are trying to manage my disease opposed to curing it.  The LBH gave me a great spring semester, and summer vacation.  And now, we hope this FDA approved drug (Doxil), will have more of an effect on these tumors.  All of them are smaller than 3x4 cm in diameter at this point, and none are in any major organs = all good things. :) 

The game plan: We will do three rounds (cycles) of Doxil, and then we will scan mid-August before my semester begins.  With this scan, there are two schools of thought -- the Doxil will work, or it will not. Most likely there will not be an inbetween. 

If it works, and my quality of life is good -- I will continue for three more cycles (total of six cycles). End somewhere around October, and then take a few months off of treatment.  

If it does not work, we think about adding two other drugs to the Doxil to make it a cocktail.  In this case we would add Gemzar and Navelbine.  Which is a normal protocal for Hodgkin's called GND -- this cocktail is used when other conditioning chemotherapies for stem cell transplant fail.  It probably isn't the prettiest thing ever -- but supposedly, people can have a quality of life on it. 

I know, this is a ton of information -- and I can't thank you all enough, for doing your homework on me :) and reading about these next steps.  I apologize if it is too much information as I know I have been been holding a lot of it back (due to my blog being public), But, now I have the opportunity to truly share the nitty gritty with you (which ain't too pretty sometimes), and rawness of the disease and future treatments, without fear that someone may stumble upon my treatment plan in my professional life.  

All in all, I am ready for this next step. I am ready to (hopefully) beat back this disease as much as possible. I had two glorious weeks away, am in love with my weekend summer classes so far, and am escaping to the New Jersey shore for the weekend... one last attempt of freedom before the infusions begin.  Most likely, for most patients, this drug hardly effects them -- and again, I hope this is true for me.  But, I like to prepare for the worst.  Only, time will tell. 

For now, I am enjoying each and every day. As much as possible. And living out each minute -- again, our goal for plan 'B' is quality of life. Not a cure. We are here to manage this chronic illness so I am able to continue my life.  And, that is what I am sticking to.  We hope the Doxil does a job on these small little tumors.  And we hope that the side effects do not drastically alter my quality of life. And that's all we can do... hope.  So if you have some time -- send some my way on the 30th =) I'd like to have extra, just in case.

hope is the thing with feathers

that perches in the soul,

and sings the tune -- without the words,

and never stops at all... 

Here's to plan B!

Sending tons of love,

B!

On the move!

I am back in Boston for just a quick weekend, and a few doctors visits early on in the week. But, wanted to share pictures of my two-week vacation stretching from the shores of Miami Florida to the Mountains of Kentucky.  I loved every, single minute of it. And was able to spend some quality time with my absolute favorite (out of state) family and friends. 

On to PA/NJ next week....!

South Beach with Chris, Alison, and Adrienne. My favorite hodgers :)

Orlando/Disney with Alecia!

Ladies of Neptune Beach Elementary

More of my favorite teachers!

My favorite kids from Neptune Beach Elementary

5th Grade Graduation!

Hiking in Kentucky with Darrel :)

As I've said, I'm only back in the bean till Tuesday -- then will be driving home for the first time since the holidays to see family and friends in Doylestown, PA. However, my quick visit packs a lot of punch. Besides starting my summer session this weekend (yes, lesley has a weekend format, during the summer - BRUTAL). I am hanging up the towel on the LBH, as my nodes have just progressed too far to continue this trial. 

To some, this is sad news. My first trial has ended that means 'Plan A' is complete. However, the LBH589 extended a lot further than I had anticipated, and I was able to muster almost an entire year of some good-quality of life months on it.  Monday and Tuesday I will be meeting with my oncologist team to set 'Plan B' into place. As I will be started a chemotherapy called Doxil which has already been FDA approved. This drug is suppose to have a synergetic affect (work in combination with the after effects of my last drug -- the LBH), and we are hopeful that this will beat back my disease before I enter my internship in the fall. 

The Doxil is one, three hour infusion every three weeks. I will be starting this treatment on June 29th. And am crossing everything I have, that I won't be plagued with horrible side effects. But! I will have more details once I meet with my favorite people at Dana Farber this week, and drill my doctors with even more questions.

The next two weeks I will not have one single drug in my body.  I can't really imagine what they even feels like after almost a straight year with the LBH in my system.  I plan to live deeply and suck all the marrow out of the next two weeks as best I can.  You should too! ;)

Sending Love to each and every one of you,

Bekah

Summer of Bekah!

Well, for me at least ;)

This is my official, summer vacation for the first time in three years.

I worked my little butt off this semester -- which definitely paid off. And LOVED every second of it. In fact, not seeing some of my favorite future-therapists in classes these last two weeks, has left my brain much less stimulated (miss you ladies!). 

However! Now is time for fun in the sun.  This afternoon I am high tailing it down to Miami, FL to meet up with two beautiful women, Adrienne and Alison. All in all this is a MUCH overdue visit with two of my favorite people who continue to fight this disease, just as I do.  After some R&R with the girls, I'll then be driving to lovely, Orlando for a day in Disney with friends.  

And THEN, after two and a half years, I'm returning to good old Jacksonville, Florida. My kids (who I taught two years ago) are graduating elementary school next weekend, and with it being my last time before they all part to separate middle schools, I wanted to give them one last hug.  So, I'll be seeing old co-workers, parents, and students.  I'm sure it'll all be very, very, bittersweet. But totally worth it. 

After my time in Florida, I head back to the bean for a quick weekend class..

and then, will spend a little over a week in PA visiting the moms -- spending some time at the Jersey shore with my family, and basking in the glory of summer. 

Although I'm looking forward to my summer classes turning up the heat in late June. I am ready to be a beach bum for a few weeks. And see some of my favorite faces. 

As for the cancer talk -- some things are in the mix, to change treatments: it appears that I'll be ending the LBH clinical trial in the next month and starting Doxil up sooner than anticipated. However, all of that will be attended to, once I return from my vacation. Once again, if you would like to continue reading my blog, please click here, and read. 

For now! I am officially declaring -- this the 'Summer of Bekah' and I am going to enjoy every minute of it.  You should too. 

  Remember to hug the ones you love today, and everyday. 

Sending Love, love, love...

B!

--

(Please note: We lost another member of our hodge army this week, please stop over to the Parr's Blog, and leave a message, as Pat (James) passed away Tuesday afternoon, leaving behind his young wife, two year old son, Josh, and lots of family and friends who are grieving.)

More heartbreak..

Although it is painful, it is important to give the respect and love necessary to those who fight till the end. Due to another turn of events, another hodgkin's warrior, and his family are fighting for his life.

Pat (also known as James), started his Hodgkin's journey during the same time as my diagnosis, and transplant schedules. As another young parent (Pat's son Josh is only two years old), Pat, has recently been put on a ventilator and they have sedated him.



I ask you to keep these warriors in your thoughts, prayers, and send them strength -- in whatever form is appropriate.

If possible, please send love to his wife, Carrie.
These times of heartbreak are inconceivable.

Bekah

Private

I apologize that I am making this blog private so suddenly.

There unfortunately has been something that was brought to my attention -- and I needed to privatize my settings as soon as possible.

This morning, I ripped through my email account, and if you have emailed me over the last two years, and I was aware you have been keeping updates through my blog -- you received an invite.

If you have not been invited, and would like to continue reading, please e-mail me as soon as possible at RebekahFurey@mac.com Also, if you feel as though you know someone else who reads this blog, and they are unaware that I am shifting to 'private' mode. Please, send their e-mail as well.

I will keep this blog open for another week -- and then will shift, to private settings.

EDIT TO ADD: If you want to be invited, you MUST e-mail me. Leaving a comment, without an e-mail address, does not give me any form of communication to invite you. So please, e-mail me. OR, when you leave a comment, leave your e-mail address. 

Thank you for your patience, with me.

Updates soon, promise!

b

Where's the anger?

First, I wanted to thank you all for the input on the blog. I do think the best scenario will be to privatize my settings, so that those who read it now -- can read it in the future. And, I welcome you to pass on my name and blog to those entering transplant or clinical trials.  I will be starting this transition in August. But, I appreciate the feedback -- I really do. 

---

In the last three months, the hodgkin's community has lost three dear individuals.  Ms. Jessica Wentz passed away last week, and it is evident that there is a little less light in the world, especially for her two younger children and husband, Tommy.  

Jessica's passing, and others in this last year, andmy own disease triggered some thoughts, that I've been confronted with as of late.  At twenty two, when I was first diagnosed with this illness I was filled with anger. I was enraged. pissed. absolutely wrought about having a second disease before the age of twenty five.  And, good lord, I showed it. 

As the months go by, and I begin to meet, interact, or talk to other individuals who have had years of treatment or are chronically ill.  You get the sense that they aren't too angry.  I would always be baffled during my first treatment, when I heard cancer patients saying, "It'll be okay, I'm not to thrilled about it, I'm just glad to be spending time with my family..." I would look at them and think -- don't you want to destroy the world? Don't you want to scream up to the heavens and YELL 'I think i've had enough character building already?! can you pick on someone else?' I was always so amazed, when these warriors spoke with such calmness. Hardly any animosity... I was always curious, where was their rage? 

Most likely, if my first line treatment was successful. I still would have it. But, after over two years (plus previous years of kidney issues), I've realized (or grown up, one of the two), that anger takes a lot of energy. I can see myself getting upset during my first few rounds of chemo, resisting the life of a cancer patient, enraged that I had to be part of this, I had to participate, because how dare I be diagnosed with a second disease? 

In turn, it's definitely been a time of growth. Everyone knows I've got a little chutzpah in me. But, we, cancer patients -- or those found in the chronic illness bunch, we have to prioritize. We have to manage. We don't have ALL the energy in the world.  I guess I bring these points up, because I felt, for a long time, that I wasted my energy getting angry.  I pushed people away.  I put walls up. I was mad. Mad at the world, for making me deal with this disease. 

The irony of it all is -- the anger doesn't make it go away. And, it doesn't totally make you feel better after you've ripped your doctor, friends, or family members to shreds, because you are so upset that you have this illness.  But, maybe we all have a time... that this shifts.  I felt humbled when another cancer patient asked me recently, "God, you must get so annoyed that this is what you have to go through.  I would be so pissed how much it messed up my life." 

Yeah. Of course I am a bit annoyed. Of course, this is a bit difficult. But, in the end, the cancer, the treatment, the physical side effects grab ENOUGH of my efforts, enough of my energy, enough of my body, enough of my attention away from 'normalcy.'  So, why would I want to hand over the rest of it to this disease as well?

So, the question. Where did my anger go? I can't say that it's totally vanished, or that I've matured so much in the last two years that it's disappeared. But what I can say is, the anger takes time and energy. And those calm cancer patients -- that don't feel like destroying the entire world around them? They make a lot more sense to me these days.  It's amazing how many things you can accomplish, and fulfill when you're not enraged every moment of the day.  And, I hope that this will be something you can all carry with you as well.

Because really -- could you even IMAGINE how much energy it would take to destroy the entire world?  So much. 

Well, at least much more energy than grad school -- 

and honestly, I'd rather be doin' that. ;0)

Sending Love, love, love...

B

Heartache for a fellow warrior.

The Hodgkin's community is a small one. The refractory hodgkin's group is even smaller. We form friendships, we know families, we share treatment ideas, and extend our knowledge to hopefully help others. 

Jessica Wentz is a twenty six year old, hodgkin's refractory warrior. With two, absolutely adorable children, Macy and Thomas, and her beautiful husband, Tommy. 

Although I can't even really put into words what is happening, Jessica, who was hoping to travel to DC this week for a clinical trial, has weakened due to the progression of her cancer.  After two years of battling, through chemo, and a transplant, it appears her family are now calling in hospice care. 

It saddens me, to no end, to share this news. 

But, I ask if you have any time. To leave a message for her family.  

As her health is weakening by the hours. 

Jessica has always been one of the first individuals to offer help, advice, or encourage others in times of need.  I can't emphasize enough how hard, she fought, and continues to fight. 

If you have the time, and comfort of words. Please leave a comment for her family, and all of those who have watched her bright spirit, by clicking HERE, to leave words on her caringbridge site. 

Sending love to the Wentz's. 

... make sure you hug the ones you love today.

and everyday.

all my love,

B. 

 

One year old.

In a few short days (April 22nd) marks the one year anniversary of receiving back my stem cells, at Upenn Hospital. It's amazing, how fast a year flies by. In no way do I really want to reminisce about the good ol' times in the transplant ward. But, I do believe that it's important whether or not your transplant has failed or been successful. That, those transplant warriors, congratulate themselves -- if you're still alive, still fighting, no matter what you're a survivor.

And, all that matters. Is I'm still here. Failed transplant or not. In the grand scheme of things, one year old bekah is doing pretty well =)

So there are few things I must update with all of you...

1. I received my scans from last week. And, we are still in the 'stable' disease range. However, through most of this trial. There is one main node, in my upper chest (the first place, I always relapse, and the first node that showed up on the PET scan after transplant), that continues to grow millimeters. Everything is tiny. M&M size remember? There aren't alarm bells going off. We are still stable. The other nodes, have hardly moved in any direction on the 15 mgs of LBH. However, if this one node continues to go at the pace it is -- in progression. My estimate is that I will be thrown off the trial in September. And, we will move to the next drug of choice: Doxil.

Am I upset? I obviously wish I could continue this trial for the rest of my life considering the quality of life I have at the moment. However, this trial has lasted me an entire year. A lot better than I expected.

Is this for sure? Absolutely not. Recently, in I informed most of you that I asked for more chemotherapy. We increased my dose from 15mgs to 20 mgs. This scan did not show any of the results from this dose increase. Since, I had only changed my treatment, less than a week before the scan.

So it could reduce that one node on the 20 mgs? Definitely. The last time I was on 20 mgs, my plateletes and blood counts were bottoming out. I could hardly stay on the 20, and we thought for sure they would throw me off the trial, since my body was not strong enough. But! i've been on the 20 mgs of LBH for about two and a half weeks now. And, as of this morning. My blood counts (after taking a small hit last week), are slowly coming back up. Which means, we might get a full cycle without any holds, or interruptions. Which could definitely be helpful in reducing this one node.

So, the worst case scenario? I have an incredible summer on the LBH, as it is holding the cancer at bay, and not allowing it to spread like wild fire. Take summer classes, enjoy a SUMMER (which I haven't experienced in about three years), and get a tan. Then, we most likely will get a scan in August, and change to Doxil Chemotherapy.

Best case scenario? The 20mgs, does some damage. And, we ride this horse until the cows come home. =)

Most likely though, we will prepare for the change in treatment, for this fall. Which is fine.

2) My life!
Things have been great on the school front, I've accepted my clinical site internship from Sept-May of next year. I will be working with children ranging from 5-18 years old, doing therapy with child witnesses/victims of Domestic Violence, counseling young women in rape crisis, helping out with a teen dating curriculum for middle schoolers, and group therapy with populations of children who have been sexually assaulted, witnessing, or other forms of trauma.

It's going to be the most rewarding experience I've ever done. But, after two years of waiting for the opportunity to work with kids again, I am more than ready. So, internship + classes + chemo = busy year, next year. But, I am incredibly pumped for it to begin.

In addition, my 'overload' semester is almost complete. As, I only have three weeks left until I can see the light at the end of the tunnel. And have a few weeks off before I lock myself in the library, for summer classes.

3.) The blog -- which is where I need your help.
As my program intensifies, and I begin to have my own clients. It appears that the internet footsteps I am leaving behind, might not be the best approach. I want to help. Obviously, for other young adults going through this period of their lives, individuals with chronic caner, or those that are entering trials that I have information for. However, I am struggling with the reality that this can easily be found. And, I would not want supervisors or clients, reviewing this site. On the flip side, I feel it's important to keep, for other survivors...

So, I guess, what I am asking is for your thoughts. If, this site is no longer helpful to others. It will be an easy decision. But, I'd love to hear what you all have to say.

4.) Hope you all are well. As Spring has FINALLY come to Boston today. I hope all of you are enjoying the sunshine, the start of baseball season, your friends, families, and your everyday lives.

Sending all of you tons and tons of love,
from boston,
and my heart.

<3 B

And you wonder where I get it from?

Tuesday was advocacy day at the capital in Pennsylvania. Harrisburg was filled with senators and lobbying committees, attempting in their small way to change our world bit by bit. Just as I have been pursuing a new career path, I'm proud to say that my mother, has as well.


My mother recently took over a director's position at Gilda's Club. Gilda's club is a community in the Deleware Valley (near my hometown of Doylestown, PA) that is dedicated to building social and emotional support for cancer patients, survivors, caretakers, and for these individuals to share hopes, fears, wisdom, and laughter through workshops, support groups, and curriculum.

As a side note, my mother and I walked into Gilda's club when I was first diagnosed in 2006, to attain some support networks and were SO disappointed with their advocacy and approach for their outreach programs -- that we both ended up counseling some of the people during that first meeting, and then, ran for the hills. But! Now, she is basically putting together support groups for blood cancer for young adults (and adults in general), advocating workshops for all ages, promoting this small community to the best of her knowledge. Like always, she's taking what she has, finding the silver lining in this horrible disease, and making it her own. Anyone near the Philly area should attempt to volunteer, join, or just be a part of the network -- it's getting bigger by the week.

Anyway, the point. As the Program directory of Gilda's Club, my mother spoke on behalf of Senate Bill 1198. The jist of this bill that we're trying to pass is based off the Cancer Clinical Trials Act. Long story short, you know all of us out there, on clinical trials (these trials are free, the drug itself), but don't have great health care coverage otherwise? Like coverage for White Blood Cell Shots (1200 dollers a pop), anti-nasea pills (sometimes 700 dollars a pill), or transfusions (you don't even want to know), so if don't have great coverage -- you can kiss your money goodbye. Luckily, I was part of a union, so this does not affect me greatly. But, it affects a lot of my friends.

* So, Bill 1198 would require insurers to provide coverage for ALL routine patient care costs when insured participates are participating in an approved cancer clinical trial. It's a small bill, for a small group of people. But it's important. These individuals, like me, are not only trying to survive, but giving our bodies to science in hope for finding a cure for you, your kids, and your grandkids! So no one has to die of this cancer.

*Edit to add (from my mother): the bill is along the same lines as 1198, but called HB 58. The senator who proposed the senate bill is stepping back- because the house unanimously passed HB 58.

1. However, they are expecting a bigger battle in the PA Senate, supporting the house bill should make it a bit easier.
2. So we are asking everyone who lives in PA to call their state senators(NOT Spector or Casey - they are federal) and ask them to ask their senators to contact Senator White- head of the insurance committee- to report the bill out of the insurance committee- and then ask their Senators to support the bill.
3. The bill has been defeated for the last three years. But, 24 states already have passed this bill- which only asks insurance companies to cover routine medical care for patients on clinical trials. Medicare recently started to cover this and there was an almost doubling of Medicare covered patients joining clinical trials. Lack of medical coverage is clearly a barrier.
   

My mothers (Darlene and Diane), drove to Harrisburg on Tuesday. My mom was asked to speak a bit... and later, I was told (which we all know would be true) that there wasn't a dry eye in the house. Here are just a few notes, of what she wrote down -- However, my mom is an amazingly powerful speaker, and if I can find someone who had video of her. I'll make sure to post that as well, since she added a lot of things inbetween.

So you wonder where I get most of my strength and power, tenacity, drive and resiliency from? Although I may hate to admit it some days, it's definitely from her. In addition, Diane, the other rock of our family, drove with my mother to lobby on account of this bill. Her unwavering and dedicated support, to our family, and this disease maybe a tad bit more quite than my mother's or my words... but it is still as solid, noticed, and appreciated. Especially since she was doing this work on her birthday week (Happy Birthday today - Di!)



So, I wanted to leave you all with my mother's words.. and hope you leave her some words of encouragement and positive thoughts.
You can email her at: KAOSX5@aol.com
Or you can easily leave a comment for her, on my blog -- as she reads it daily.

On Behalf of Senate Bill HB 58

Darlene's Words, Program Director from Gilda's Club

I am here to speak for my daughter Rebekah, because she can't be here. Rebekah is my firstborn. Bright, beautiful, fiesty, independent, athletic. She knew from the time she was little that she wanted to be a teacher.

Rebekah graduated from college in May 2006. at 22. She accepted a teaching position in Jacksonville, Fla, right out of college. In Dec 2006, She came home for a visit and on the way home from the airport and mentioned a lump in her neck. In January 2007, she was diagnosed with Hodgkin’s lymphoma, took a leave from her teaching job and returned to Pennsylvania for treatment at UPenn. She received chemotherapy from January to July. She was unable to work- or do much else.

She then achieved remission and moved to Boston to begin graduate school and return to teaching. In December 2007, she relapsed. And returned to Pennsylvania to undergo a stem cell transplant. Her life stopped during treatment. She was very sick. Had several hospitalizations due to side effects of treatment. Our life stood still as well as we became her fulltime caregivers.

Salvage chemo put her into remission once again. As she underwent an auto stem cell transplant in May, and in July 2008 she returned to Boston to resume graduate school... Shortly threafter, she had a PET scan and we learned the the transplant had failed.

Rebekah was/is now considered to be refractory- resistant to treatment. She was put on social security disability. She was 24 years old.

Rebekah was told she had two choices- an allo transplant- which is risky, small odds of success and required spending the better part another year of her life in debilitating treatment- or clinical trials.

In Fall of 2008, she began clinical trials at Dana Farber in Boston, where she is currently being treated. Rebekah can't be here today because she has class. Rebekah currently attends graduate school where she is pursuing a masters in counseling psychology full time. She is living fully and independently. She sees friends, goes on vacation, goes to school. She goes to the hospital once a week for tests- and dosing.

Clinical trials have not only treated Rebekah’s cancer- but she has achieved a significant reduction in her disease- as these trials have allowed her to live her life. Rebekah was lucky that her first job was a union job. They continued her health benefits for two years while she was on leave. She has only recently started using COBRA.

If her insurance did not cover the extra medical costs of treatment- I'm not sure how we would have afforded the costs. By the time you get to clinical trials- a family’s resources are often completely depleted. A Cancer diagnosis changes your life- and the lives of everyone who loves you. So many hopes and dreams are shattered.

Our family was financially devastated by the costs and lost income associated with Rebekah's first two lines of treatment. Fighting cancer is hard enough without being consumed by the medical and financial costs that come with that fight. At Gilda’s Club Delaware Valley- I work every day with individuals who have found hope in clinical trials. Yet they struggle with the costs that accompany treatment.

I am honored to speak today for all those people- and Rebekah- those amazing cancer warriors- the true trailblazers -who are on the cutting edge of medicine- contributing to the search for the cure- that will benefit those who come after them- and all of us. These individuals are heroes who want nothing more than the chance to live their lives,
love their families and
reclaim their dreams.

The least that we can do is insure that they won't have to worry about additional medical costs as they do so.


A little more than two years ago, this disease began to change my life. But, bit by bit, it appears, we, especially my mothers, are attempting to seek the change that is so necessary, to better others' lives along the way. As we all continue the fight.

Sending Love,
to each of you,

B

Just call me, Lucky.

At this point in time, I'm comfortable enough to say, that in the worst of the worst of situations. I am the luckiest girl in the world. The last two months I have been overwhelmed with an amazing program at Lesley. Although Education, always felt like 'my calling,' I never seemed to connect with my peers very well in the Master's level. Being, one of the oldest woman in the program.

Now, as I am one of the babies, I am incredibly humbled and feel such gratitude towards my peers and incredibly introspective professors. My classes, the challenges, the papers, and the discussion is rich, thought-provoking, and raw. Real issues, ethical questions, my mind finally feels challenged in a way, I didn't realize was possible. Although I have a zero psych background, this path makes me feel at home. In some ways, I knew I'd get to this here (maybe twenty years from now), but I'm glad I'm somehow, I got here faster then expected. And am so overwhelmed with the community developed within each classroom. To say that I'm happy, would be an understatement. And, when friends call me a nerd or a work-a-holic for focusing my attention this last month on my studies and internship interviews -- I'm okay with it. This is not a program, of just books here. This is program for and of people. This is a program, in which we are all making a difference, and I'm grateful to be part of it.

Aside from that, my midterm papers are pretty much over. Which, lets me breathe a bit more. Still lots of work, but I have had the beautiful opportunity to spend and be spending time with my gorgeous friends. For the first time in three years, I went and celebrated my birthday with an amazing gift from my uncle and aunt, who invited me to their beach house in Florida with three of my a-mazing girlfriends from Doylestown. I have never, ever, been more relaxed in my life. It was heaven.




Aside from our four-day-vacation. Midterms. And up-coming interviews for my internship for next year. I have been spending a decent amount in the hospital this week. Which is okay. But, thought it would be important to lend some advice to those who are on the clinical trial track. Although, in the beginning the LBH589 was very stricked, and I didn't have a lot of flexibility my doctors and I have been attempting to 'bend the rules' a bit. For instance, I was suppose to have a CT scan about two weeks ago. But, with the pressures of coursework last week and this week. I asked to propose to the drug company if we could push it off a bit. In response, they accepted this request. Sometimes -- like a wise woman once said (Alison ;))... All you have to do is ask.

We are also, experimenting. At the moment I was on 15mgs of LBH, feeling a bit nervous for this upcoming scan since the last scan did not reveal any reduction (yes, I probably should have told you all, but stable is still good, at this point in time). I asked since my plateletes were going up, and doing well, if we could up my dose a bit. I know what you're thinking -- who asks for MORE chemotherapy? Well, me :) If I get thrown off this trial, most likely, I will be entering a tougher chemo regimen, so, if my body can handle a higher dose in chemotherapy, on this trial. I will take it.

Thus, on Friday, we began on 20mgs. The catch? The drug company needs blood tests from me every week. So instead of spending one full day at Dana Farber every other week -- it looks like I'll be there a bit more until my body proves it can handle the 20, or not. I'm okay with this for now. As, a scan is coming up soon. I guess I just want to push my body as far as I can, in hopes that two extra weeks of a higher dose will reduce some of these tumors -- who knows right? As far as side effects, I'm trying to suck it up. But my body can already feel the difference as my fatigue has reared its ugly head again, and the nasea has returned. But, sometimes, risks like this are worth it. You give a little, you take a little. You have to strike that balance.

So, time will tell. Other then that. Things are wonderful -- which is the reason for the lack of updates. I am attempting to not think about cancer, unless I absolutely have to. Which has taken time to get used to, but every day, I am learning more, and coping with this to the best of my ability. If not for myself, in hopes that other young adults with a chronic cancer can see -- it can be done. And you can still live and accomplish your goals.

And, on a side note -- who can seriously think of cancer. When you have these gorgeous locks? Have I mentioned I LOVE having hair again? Hope all of you are doing well, and enjoying the sunshine in your life, as much as I am.

Love, love, love,
B

Help Jasmina: become a donor.

Click below, to view the video of Jasmina: she needs your help.

Whirlwind.

How I feel at the moment...



Papers. Class. Internship Interviews. Life.
Tired and smiling.

Promise to come up for air, soon.
Lots of pictures to come....

<3 B

Iron workers, Cancer patients, Shop-a-holics, oh my!

I like to think my blog is more about the emotional, introspective, thoughts of surviving cancer. But there are a few things you should take the time to look over this week...

As I'm sitting at Dana Farber, for some lovely treatment and EKG's. I'm reminded of a story from the Boston Globe, about the Ironworkers at Dana-Farber. They're constructing a new building here in Boston, for children with cancer (Yawkey Way for the Jimmy Fund Program). And, with each beam, they're spray painting the names of these children who are patients at DF, as they continue to build.. it's an absolutely beautiful and simple thing that they're doing.



Second, Hillary has yet again written an entry in her blog, if you have a minute. Take some time to read her feelings on disability discrimination on her February 27th entry, by clicking here. She writes about some pretty powerful stuff, for us kids, that are categorized, labeled, or point blank -- disabled because of illness, trauma, ect.

Lastly: for my shop-a-holics! This was brought to my attention by another hodge warrior, Kelly.

Apparently the GAP Banana Republic, and Old Navy have coupons for 30% off from March 12-15th. In turn 5% of your proceeds, when you go and buys some new clothes will go to the Leukemia and Lymphoma Society. Which is totally bankrupted right now, and they're having to turn people away left and right that have financial needs for patients. So, guys, go out and buy some new clothes! Click here for the coupon, and print it out. And PS - you can use the coupon as many times as you like, throughout the weekend, over and over again. How amazing is that?

Hope you all have a beautiful weekend,
Sending Love, love, love...

B!

What if?

I recently wrote this on a Hodgkin's Support Board/Forum. The message is more or less for Hodgkin's warriors or any other cancer survivor battling their way through first or second-line treatment, with a hope of a cure.However, I do believe if you've experienced any traumatic event you will be able to relate to this post as well.

Also let it be known that without the knowledge of Sarah and Adrienne and Alison. I doubt I would be able to write the following...

(Refractory disease: those who are resistant to treatment or respond to treatment but the cancer continues to return, this is my type of disease.)
-----
Just as I was beginning to finish my six months of ABVD chemotherapy, Sarah Hawthorne (now a precious angel), posted a thread about relapse. In her own words, she said that if we were not facing relapse, we shouldn't think about it. That, it is a very small category of individuals, and that we should just live, LIVE, LIVE. After we completed treatment.

I took those words to heart, and at twenty two, only a month after my six months of chemo, moved back to my undergrad stomping grounds in Boston. Bald, scared, nervous, but ready to take on the world, a second grade teaching job, and master level classes. I was going to live. That's what Sarah said to do, so that is what I was going to do.

A lot of people struggle once completing their first line treatment. We worry, we have anxiety, the fears, the nightmares, and it's all understandable. I hear all of you when you say you're concerned, 'well what if it comes back?' I was completely guilty of those fears as well; however, something in Sarah's post motivated me to not let this disease entirely consume me. I had a choice. I could either, stay in my hometown with my family. And slowly, decide when to start my life again. Or, take life by the horns, and start now. I didn't focus on, if it would back. I did not question my doctors every visit. I made my choice. I was done, I moved, I left, and I began life.

I moved back to Boston in August of '07. I went out with friends, I started a job, I took four grad courses, I embraced Boston with everything I could, I tasted every day as if it was my last. And, I even had an incredible whirlwind romance that ended in the best friendship I could've dreamed of. All within a six month period. Did I think of cancer? Of course. Did i worry about it every day? No. Sarah told me not to. So, I pushed on. Looking back, without any hesitation, those five/six months were the best months of my entire life.

Six months after my last chemotherapy is January of '08 I relapsed. And within a quick, eight month period, I quit my job (for the second time), left school, my friends, the romance, my city, and fought for my life after undergoing a stem cell transplant. When August of '08 arrived, only sixty five days after transplant. I thought of Sarah. And , once again. I made a choice. I could either sit in my small home town and wonder.. what if I relapse again? What will I do if it comes back? How will I go on? Or, decide to not feel my neck every night, not focus on my scars, not question every bump or bruise on my body. And move back, to Boston.

Which is where I am typing these thoughts right now. There are a lot of new individuals who are going through first and second line-treatment on this board, and you will find this foruma wealth of information, the support is incredibly loving and kind hearted, and the friends you connect with, I guaratee will be some you will hold on to the rest of your lives. However, consequently, it is also a place, that introduces individuals who relapse, and relapse again, and that can cause some, concern. And the ability to form these anxious fears...

It turns out, at my hundred day scan. I did, in fact, relapse again. But my thoughts aren't here for you to read about being refractory. They are here for you, to carry with you, as I've carried Sarah's.

In life, we have many choices. Where we live. Our professions. Our partners. Friends. Where we decide to educate ourselves. But, there are some things we do not have any control over. Our disease, our staging, specific treatments. The point being. I hear a lot of ou... when you say, 'I can't stop worrying, it's just not that easy.' Trust me, I've been there. And, I recognize that none of this is easy. None of it.

I know, how hard this is. I know what it is like after six months of chemotherapy, feeling defeated, worn down, broken hearted, lost, scared, and questioning yourself, your beliefs, and possibly your faith. I have felt and experienced all of it. I know what it is like to scramble for finances, to lose sleep over health insurance, to wonder - truthfully and honestly how much time do I have left? I have been there, good g-d, I have been there.

However because of other refractory warriors. I have learned from the beginning - at the young, immature, age of twenty two. That, we all have choices. Remember: We do not have any control of our disease, but we DO have control over how we react to it. In my eyes, it is your choice what to do with your thoughts, and actions after you have completed treatment. Think, worry, overanalyze? Or focus on what can be done, what you can acheive, where you can go, and what you do now...

Sarah was right. We are a small group. The relapse and refractory. And I truly wish none of you take this path. But, these are lessons I learned two years ago. In my own head, if I allowed the fears of cancer to rule my life - it won. The disease itself might not have won physically, but emotionally, if I let it control a majority of my thoughts. It won. And, I don't like to lose.

This note is not meant to hurt, or offend anyone. More or less it is meant to open up your eyes. I know, I am only twenty four. There are things I have yet to experience, and I know for some of you.. you're thinking in your head. Well, she doesn't have a family or kids.

And you are right. I do not have a partner. I do not have children, that might be left behind. But, I am a young adult, with incredibly close family, friends that would take a bullet for me, health insurance to constantly worry about, and bills to be met. I have responsibilities, I live on my own, and I have made these choices, more or less with my family's blessings opposed to their own feelings. I understand the feeling of wanting to ask everyone... 'Well what if it comes back? What will we do? How will we cope? How am I going to financially, medically, physically, and emotionally survive?'

Cancer is frightening. It's scary. Relapse, is no one's cup of tea. And refractory...is absolutely bone-chilling. But, if you take anything from this, or me, or Sarah. Know that if you are not living it NOW. Do not let it consume you NOW. Those questions, 'What if it comes back?' Well it hasn't. And most likely. It won't. And that's where you get to make your choice. If a stubborn, twenty two year old... can put these thoughts aside. You can too. If a twenty three year old can battle through transplant, and then move six hours away from home... You can too. If a twenty four year old can live with cancer inside of them, and continue on with school, life and not have cancer be every single thought of their day.

You can too.

You have a choice. And yes, I realize it takes time. And yes, I believe everyone has to process this disease in their own way. But, at some point when you have completed your first or second line treatment, you will be faced with a fork in the road: to worry or not. To let it consume you, or not. To let these anxieties eat you alive, or get therapy. To lay awake at night wondering 'what if?' or to live now.

So, my message, I guess is this: Our hope is that your anxieties and worrying minds, lessen over time. And when you are faced with the decision to stay in your home-town, and dwell on cancer, or take life by the horns and move to Boston.

I hope you join me in Boston.
---
Sending you love, love love...
B

No words, just love.

Just shy of his one year (allo transplant) re-birthday. Fellow Hodgkin's fighter, Tyler Chambers, only a freshmen in college, suddenly passed away this weekend.

His mother, Kelly, writes....

After a three year long battle with Hodgkins Lymphoma, Tyler passed away suddenly Saturday night around 6:00pm.
Tyler was always a fighter but couldn't fight what ever took him from us Saturday.

Please visit Tyler's Blog, by clicking here.
To send your love, condolences, and thoughts to Kelly and the rest of her family, in which you can leave a comment on their blog.


My heart is with you Kelly,
I have no words,
just sending love.

- B

How do you live with chronic cancer?

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

Who's a happy camper?

Me!

Just a quick note, because yet again, my lovely support system has bombarded me with calls and e-mails ;) And, I don't have enough energy to respond to everyone... at the moment.

So kids, the CT went extremely well today.

The good news:
1) no progression
2) we are calling this scan as of right now, stable to small reduction in the disease (my tumors are too tiny at this point, for the techs to determine the percentage of reduction from the preliminary report)
3) my onc team is thrilled
4) no changes of meds (LBH589) or ANYthing till the first week of April, that means, no scans till April, whoooop whooop!
5) first scan, in which my platelets have been awesome, my quality of life is awesome, and no progression/small reduction of disease is awesome.

Bad news:
1) none!

So basically, most of today, was awesome.
I'll update more, once I receive the final report on Monday.
Hope you all have a wonderful weekend,
and stay warm :)

Sending all my love
to all of you,

B!