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!

I need you.

Actually, if you want to get literal, Ms. Hillary St. Pierre , needs you. In fact, she is a really tough cookie, and probably doesn't need anyone. But, I'm asking you, for me.

I need your help, for Ms. Hillary.

Isn't she a cutie?

So, Ms. Hillary, is a spitfire of a woman. She's twenty six. Has a beautiful son. And, as far as being a Hodgkin's patient, has undergone almost everything possible, for standard treatment. And here's the part, where I need my loyal, supporters to help. Hillary, although, being the independent, beautiful, stubborn, woman she is. Hil Just underwent an allo-transplant at Dana Farber. Her second transplant within a year. Personally, I can't even imagine. One transplant, is all my body could ever handle.

Unfortunately, her one hundred day scan, was not a positive one. After her allo-transplant, (stem cells from a donor), it appears that the cancer has returned, once again. Hillary is in no way, giving up. She's looking for other holistic treatments, diets, and other paths of treatments to keep that beautiful smile of her's going. But, just as you've all watched me, after a failed transplant. You know the heartbreak, and pain this kind of scan can bring upon someone. Their family, and friends.

It is utterly, heart-wrenching. And, I can't even imagine how I would feel after two transplant.

So, what do I need from you?

I have always been overwlemed with the amount of support, I receive on my blog. E-mails, and phone calls. I get. No matter what news comes my way. Therefore, If you care about me. I need you to utilize that support, and share it with Hillary. She is going through more than ANYone should, let alone, at the age of twenty six, with a family.

So, instead of leaving me comments, or e-mailing me, or sending positive vibes to me at this time. I ask you to focus your loving, incredibly beautiful, thoughts, smiles, love, and support to Hillary. She needs you. And even if she won't admit it -- cause she is as stubborn as I am ;) I'M telling you. I need it. I need you, to support, someone. The way you support me.

Commenting on her blog,
Click HERE, to access Hillary's blog.

or if you'd like to send something more personal..

her e-mail is:
hillaryst_pierre@hotmail.com
or
hill.stpierre@gmail.com


I have full faith, that Hillary has tons of supporters in her own network. But, in my mind, there is no such thing -- as having too many supporters, in your corner, when facing this kind of battle.

In advance, I thank you, thank you, thank you. For your love.

<3 B

Too good to be true?

First, thank you all for being patient with me this last month. I personally, was able to take some time away from blogs, cancer information, boards, and some communication in general. And, basically basked in the glory of good blood counts, and visited friends and families during this holiday break. It was nice, to not have to think of my heath twenty-four/seven. And, I just wanted to thank you all, for giving me that space.

For the first time, in a very, very long time. I had planned the next set of treatment (the Doxil, drug), since my platelets were not doing well the last few months. But, much to our surprise. In the last month, every time my levels were tested. My counts have slowly moved up. Today, we reached an all-time high of 115. Which is amazing. Not only are my counts holding, but they are slowly moving up. Which means, I can not get booted off the trial due to my blood levels anymore. (Hip-hip-horay!).

In addition, all of my other counts are going up -- which means, I feel great :)

So, it appears that this dose of drug. Is tolerable. Livable. and I'm having a wonderful, quality of life on it. So, why have I been hesitant to post this incredible news?

My upcoming CT scan. On January 30th.

With the dose being this low (15mgs of LBH), the doctors are hesitant, about the outcome of this scan. With the higher dose, there was definite reduction of disease. But, with this low of a dose, it appears, no one knows, really what the outcome will be. Will this low dosage, be able to keep the cancer at bay? Or are only the higher doses of LBH the ones that have the ability to reduce my disease? So, we will see.

For now, everything is moving in the right direction again. My program started a few weeks ago, I absolutely LOVE what I have gotten myself into ;) My orientation was a-mazing. I met some incredible people, and professors. And, am pleased that I made this jump into a new professional direction. My counts are great. My energy is decent. My smile, is usually pasted on and REAL 95% of the time. So, I'm sure you can all understand why I am a little skeptical, of this scan.

My ducks, once again, are all in a row. And, although, we are prepared to change treatment, if the scan shows progression. MY GOD. wouldn't it be nice, if these last two months could continue throughout my semester?

To just have stable disease. Just seems, too good, to be true. With, everything else. 'Working' in my life. But, we will just have to see. Again, I wanted to thank you, thank you, all. For, your voices of concern this last month or two. It's been so nice, to feel normal, for a bit. And, take some distance, when I can. For now, we once again will prepare for the worst (progression of disease), but hope for the best (stable disease).

And, no matter the outcome, just be aware. That I am so incredibly thankful. I had some flawless weeks, of normalcy, happiness, and lots of smiles with friends, family, and my education.

Sending Love,

B

No news, is good news.

Recently, I have been receiving an overwhelming amount of e-mails, voicing concern.
Just to make everyone aware, for now, no news, is good news.
Promise to update soon.





Sending Love,

B

Brrrr... Happy Holidays!

Just a quick note to wish you all a happy holiday season. And hoping you all keep warm! It is freezing here in Boston, these are truly the days I miss living by the beaches in Florida. And the people ;) A foot and a half of snow in two days, is a little too much for my liking.

As for me, I'm packing up. Heading home to PA, for a few days. Seeing the family. Then getting my butt back here, to start prepping for an early January term, that starts the week of the 5th.

By some miracle, last week, my platelets held up. So, I was not kicked off the trial. A very nice surprise, considering, we were all preparing for the next step of treatment. It seems as though my body is getting a bit stronger, and in the midst of everything, is handling the 15mgs of LBH very well. My next PET/CT will be on January 5th. (edit to add, there will be no PET/CT this month. During Cycle three of this treatment - there is no scan. Next scan will be beginning of February).

We also found out that Jacob, my brother, was a perfect 10/10 match for an allo transplant. If, down the road, in five or six years, I consider that as option. So, all in all, very good news as of late.

Wishing all of you the happiest of holidays, and a VERY safe and healthy new year.
Here's to 2009, being the best of 'em yet.

love,
your favorite jew.

Be ignited..

Be ignited or be gone...
- Mary Oliver

There's nothing more enjoyable, then sharing good news with all of you... so, I thought it would be nice to take a break from cancer, and share some good news, in my personal life.

As some of you know, last year I was accepted into Lesley College - School of Education. Thinking I would definitely be returning to full time teaching. However, because of this 'chronic' cancer, and needing more flexibility, and also, seeing as my goals have shifted a bit. I realized, that I needed to sharpen my focus. I absolutely love teaching. It's a passion of mine that will never die. But, if you've seen me in the classroom. You can see the social work blood in me, as well. The family life of a child, and their development, has always held more priority than any academics.

Therefore, I decided I wanted to change my Master's Degree. Except, it was in a completely different department, and deciding at this point, I wasn't absolutely sure I would get in.

So, I have been keeping something, very close to my heart. Very quite as of late. These days I really don't like to get my hopes up too high. So, for the last three weeks I have been jumping through some hoops -- taking some tests, writing essays, and having interviews. Since the program is so small. But, alas! I received a call Monday morning, and they've decided to accept me, into this program.

Instead of a degree in Literacy in Elementary Education, I am beginning a program with Counseling & Psyche, called 'adjustment counseling' with a specialization in elementary education. Basically, Boston Public is beginning to put counselors in their schools, to help aid with students behaviors, family situations, disabilities, ect. By graduation, I will receive my licensure with the DOE (department of education, to counsel in schools), and my mental health license, to practice privately -- if I wish, at some point in the future.

Lesley University is, an amazing school. And on top of classes, I will get TWO year round internships. My first, will start in the fall at a clinical site, and second the following fall at an elementary school. I begin the program this spring, and will walk by May of 2011. To say that I am excited would be an understatement.

A part of me, when I was told that I relapsed after transplant, knew my days of teaching, on my feet, for 6-7 hours a day were over. But, I do believe this program will allow me to continue to treat my disease, when needed. And fulfill, my love and passion for working in Boston Public with kids.

Even though, this may not appear to be HUGE news to anyone else. These small victories, in which I do put my heart on the line, to attempt to keep going, to attempt to fulfill my goals and passions, makes the fight worth fighting.

Let's hear it for small victories, that make me smile. oh. so. wide.



Sending Love,

B

You bounce.

Yesterday was the first snow in Boston. It was light. But, still, the first snow seems the sweetest here. So innocent, perfect, signals the holidays are coming. Finals are here for the Boston area. Change for the new year. Anyway, it was sweet. Ask me again in another month, I'll probably have different thoughts... but for now, I enjoyed it.

As for me, I'm back. I've dusted myself off, and have bounced back. It's a new week. And I feel great, physically. Since I've been in a 'drug holding pattern' for six days. It's amazing how fast my body feels, once I'm off the drug for a few days. And that usually translates into feeling amazing, emotionally. When my counts are low, I am low. When my counts are great, I feel great. It's a shame most of the drugs I will be receiving in the next few years will most likely drop my blood levels. But, no complaining at the moment - they're keeping me alive.

This week, today actually, I will go in and receive my blood tests. And begin my 15mgs of LBH. This will continue for two more weeks, until I get tested again. Here is to hoping, that my platelets will NOT drop so low. If they balance out, on 15 (which is highly unlikely, says most of the doctors). we could possibly continue this trial for another month.

But, we will take it a day at a time.

My CT from last week revealed some good news; however, even though the preliminary report showed 'stable' disease. It appears, since my tumors are so tiny (imagine m&m size tumors), that they did shrink. There was reduction, in what is left in my body. So, we are very happy with that news. There are about 3-4, tiny, tiny nodes. That we're hoping will continue to decrease in size with this last dose of 15 mgs. The next plan of attack if my blood levels take a nose dive at the end of December, is to begin a drug called Doxil.

The LBH and Doxil, appear to have a synergestic effect. This means that because of what the LBH does to the cancer (destroy the enzymes that allow the cancer to multiply), the Doxil then works in combination with the lasting effects of the LBH. The Doxil is NOT a clinicial trial, it is a normal FDA approved drug that is suppose to have little to no side effects (ha. yeah right, which drug, have I received with no side effects!).

But for those that worry ;) This drug is not life threatening. It is given once, every three weeks. And it has been previously used with other drug agents for Breast Cancer, Ovarian Cancer, and relapsed Hodgkin's Lymphoma (usually it is in combination in the GND cocktail). But, with just the Doxil, with one agent, it is not suppose to be that toxic. And I can be treated with it from 6-10 months, depending on if my cancer is progressing or if there is reduction.

But, I hesitate to even post this next plan of attack. I just wanted to give you all a heads up of what my doctors, family, and I are thinking will take part in the next few weeks. For now, we will continue the LBH until they formally kick me off.

On the cancer front: if you have the time. Please visit my favorite warriors, as they are in the trenches of their own cancer battles.

Adrienne and Alison, have been an incredible support to me throughout the last two years. And, after losing one of their puppies last week to a virus, a scan revealed that Adrienne has progression of her disease. To say the least, it's been a rough few weeks for them. They will be visiting the lovely Doctor O'conner, in the next week, in which we all hope he has answers, for them to control this progression.

Also, fellow fighter, Eric, is going through his second allo-transplant. Kathy (his mother) has also been an amazing support to me in the last year. And they are both fighting with all their might for Eric to be cured.

And lastly, a new-hodge face, is Hillary, who also received LBH at Dana Farber. And is recovering from her allo-transplant.

If you have time, leave some love for these individuals.
Also wanted to thank you all, for your kind thoughts last week, emails and phone calls. You will never know how much all of your support, carries me through my hard days...

Hoping you all, take hold of your good days.
Drink lots of fluids, and enjoy your time with family and friends as we approach the new year.

Sending Love,

B

I'm ready to talk about it...

Just to preface this note, I've been somewhat emotional the last few days. Something, I hardly admit to myself let alone my support group. But, I need to write, and I need support. More than normal lately. So, I'm reaching out, I guess. And it's always been difficult for me, to do this. So, if you are not in a good spot, emotionally to read some upsetting things. click the nice red X at the top of your screen. And, I'm guessing by the end of the week, I will have another 'peppy bekah post.'

----
Last year was one of the first times, I felt, the pain of losing someone to cancer. I mean, we all feel connected in a way when someone we 'know' dies of this disease. But, Sarah was different, Sarah was close to my heart. A friend of mine who I connected to, on a Hodgkin's forum. Sarah passed away, just shy of a year ago. And, I still have yet to really grieve over her spirit, and who she was. And, I miss her, dearly. My heart, still hurts. And a part of me is never sure, if I will ever be able to heal these wounds. She was, an amazing, amazing person. And it was the first time, in a while, that it hit me.

(and here's the selfish part). It hit me that even, the really good, the really beautiful-spirited and kind hearted, the most wonderful people in the world. They die. They die, unfairly. They die, in pain. Sarah had hodgkin's, and relapsed, just as I have... she even had a bit more remission time between ABVD chemo and transplant. But this amazing, this beautiful woman, who would almost lay her life down for anyone, and support anyone, she passed away last year. And it hit me. Hard. Because, no one should die of this disease -- but above all, I believed that our spirits let us rise above. Do not get me wrong, it carried Sarah far, she was a warrior, she fell in love with an amazing partner, and made amazing connections, and I am so jealous of her travels and the life she accomplished while she was here. But a part of me, the day she passed, realized, how unfair life really was. And it still hurts. God, it hurts.

Second, this summer as most of you know was very rough for me during transplant. And I had the opportunity to connect with another transplanter, my age, around the Philly area. My friend, Scott. I can tell you right now, Scott was totally different than me, and Sarah. He felt as though he had a right to bitch and moan about the disease. And boy he did. ;) The timing worked out perfect for us. I had a transplant in May, and his was in June. Thus, when I got out, and had restrictions Scott would visit, and then once he headed in, I had recouped enough to go to his house, and be with him and his family.

Scott and I didn't really agree with a lot of things. He would make me watch the cheesiest romantic comedies, and stupid comedies. I think I even watched a movie with Jim Carey in it -- and you all know how I feel about him. But, we had a common bond. We were young. Going through transplant. While the rest of the world, was living. We were trying to survive. And it was nice, to have someone at that time, physically present in my life. We also discussed what would happen if our cancer's came back after the transplant, what our thoughts were on fighting, on life, on Greece, we even made a bet who would get married first. Put 100 dollars down on it.

A lot of people weren't surprised, that I found someone in the area to connect to-- most of you know I have dear, dear friends who are also individuals who have been through transplant around the globe. But, to spend a summer with someone, physically watching you two go through the same thing. It was a different connection. Neither is stronger than the other, it is just, different. It was nice to be able to be next to someone, not say anything, and know. Just know, what the other was going through - without any explanaition.

Scott and I had just talked about when I was coming home for Thanksgiving. Home has always been a hard place for me to be. Since all of my previous treatments were at Upenn. To say the least, Scott just made it easier to be there. Even though we didn't share all the same views on life and love and cancer. It was a relief, knowing, I could drive a half hour to his house, and see him, on the holidays. At least that is what we planned.

Just as my cancer returned in the early fall, Scott's did as well. Scott decided to do different treatment than clinical trials, right away. And after talking with him only a few days before in early November, about seeing him for most of the week for Thanksgiving. He passed away due to an infection from chemo the second week of November.

And just, as I miss Sarah. I miss Scott.
And the reality, has set in again. That no one is invincible. That people are in pain. That people die. of this. And, it is hard. It is so hard. To watch. And then, to try to keep going.

I agree, that most of the time, I try to find the silver lining. I do not believe all of illness or sickness will result in death, pain, and loss. But, another part of me is very, very tired. Someone once told me, I shouldn't get close to other cancer patients. That inevitably someone will pass away, and it will change me.

And it has. But, I would never go back and change my relationships, at all. I cared for these two individuals. I think of Sarah often, and for the life of me, I'm completely torn up that I never got to give Scott a hug goodbye. But, it has also taught me, a really difficult lesson.

Pain and death and heartache, can happen to really good, really good people.
And if it could happen to Scott, and it can happen to Sarah.
With time, it can easily happen with me.

And that's something that we all, need to start, accepting.
Today, i'm just really. really. struggling. And I just wonder, if I'm strong enough..
for all of this.

-
Bekah

Good news or bad news?

I apologize if I have not gotten back to you tonight. or today.
Lots of people called and emailed, and to say the least I just had a very, very long day.

So good news or bad news?

It appears that my disease is 'stable.' With the preliminary report. Which is good. However, because of my low platelets, I most likely will not be on this trial much longer. My body does not seem to be handling the drug very well, and every other week I'm on and off.

They begin this trial with 40 mgs, then each time my platelets plummet, they hold the drug for a week and await for them to rebound. Next dose, I was lowered to 30, last week I was at 20, and now, with only twenty-something platelets today, I will be lowered most likely to 15 mgs.

Although, I have a very strong spirit. I know, I have a very, very weak body. And so, the doctors today basically think, within the next three weeks. I will again go through the motions -- take the drug, watch my counts dive, and then... Well, they don't go lower than 15 mgs.

So - good news. No new disease, as it appears from this point. So, I have a few spots still in my chest. Bad news is, that it looks like its the end of the line for this trial by the end of December. For other hodger's who are reading this... the LBH589 trial works, well is working for many. And many, their numbers are not diving. I am, to say the least, not the norm. Unique. Heh.

The LBH, is now heading into a phase II trial, just for Hodgkin's Lymphoma. And, I do recommend it for those who have relapsed after their transplant.

Luckily, my family and I have already discussed the next steps. Since, we knew this was occuring with my blood levels. In which, I will update all of you, in the next day or so. It will be at DF, and it appears, not that toxic.

So, we will see.
In my eyes, there are always more options...
promising trials and research.

Sending Love to you all,

Bekah

Thanksgivin is a comin'

Im slowly learning, to roll with the punches on this trial. And I think I'm getting better at it. For one, when I do feel good -- I'm sucking the marrow out of each bone presented. Living, as much as I can (or at least I attempt to). here are some beautiful pictures, of some beautiful people.. in the last few months, that have kept me going. And that, to put it bluntly, I'm just really thankful to be surrounded by such pretty faces.

Before the trial began in October, my two dearest friends John and Tim took me on a 10 mile hike through the New England Mountains....It was right before the Trial started in September, so I had some more energy in me than I do now.









In September we got to celebrate with a few friends, at one of the last Sox Games at Fenway, and my good friend, Darrel, joined us from Ohio.













October, we had difficulties with the LBH, starting, and all of the side effects. So, in my mind, my good thoughts just moved straright towards November, in which we had a college reuinion in Boston, with most of the girls I graduated with from Wheelock.


Especially SAMMY! who just got recently engaged, and we are all thrilled for her :)
The rest of the crew



Me and Joshua - one of my best friend's husbands.

Myself and Amanda....


Jen and Joshua...
The newly engaged, Sam and Joey.

Two of my favorite girls since college,
Nik and Jen. <3


And our other newly engaged, Ms. Emily :)







Some of us the morning after.... Sometimes, its really really nice, to forget that you have this chornic cancer, that will never go away.


And just, surround yourself, with pretty faces.
There are some big changes coming up for me, if I end passing certain tests, interviews, and essays for a program at Lesley. Since, I will most likely not be continuing my Literacy Degree for the classroom teacher. I've found that, with the restritctions of trials, and my fatigue level, I needed to look into another career. One with more flexiblity and hopefully a little less time standing up 24/7.

I'll update you all soon, as things progress. But I think I will ultimately, be very happy when the beginning of January starts setting in, and I am on a path towards a Job, that I love, and is flexible for my life with cancer.

Hope you all are well, and getting ready to see your favorites on Turkey Day.
I know I am.

Sending Tons of Love,

B