My Decembers.

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

-Wislawa Szymborska

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

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

  

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

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

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

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

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

 -----

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

and all my heart and more,

b. 

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

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

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

Regen

Recently, I've been captivated by a young woman by the name of Selma Meerbaum-Eisinger. Selma was born in Romania (now Ukraine). She was this frizzy haired, freckled nosed, young woman who started writing poetry at fifteen, during the Holocaust. At Sixteen, her and her family were sent to a labor camp in Ukraine, called Michailowka. In which she died, within the camp at age 18.

The preface of this specific book (Harvest of Blossoms), describes Selma, the person she was. The writing she created, the sweet young-love, in which she dedicated most of her poetry to. And, how her writing survived, the labor camp, was passed through friends hands, from Tel Aviv, and eventually was descovered by a small German Publishing House. Another young life, cut short, but her words, thoughts, beauty for the world, even with all of its misery can be found within almost each of her poems.

Although many words touch me, it has been a difficult week or two, for some of my favorite people. Who are in the cancer trenches, themeselves. This week, a few friends including Adrienne, were taken off the MGCD0103 clinical trial.

Another, Hodgkin's all0-transplanter, Eric, recently is struggling with not being able to produce bone marrow. Which means, more chemo and treatment for him. Both individuals, and moms are incredibly strong, and I believe will take steps they need to continue both Adrienne and Eric's steps to manage their situations. But, I share their frustration watching both young adults fighting for their lives... in some form.

And lastly, a dear, young friend of mine who I became close with during this summer while we both entered transplant at Upenn, Scott Reeder, at age 28, passed away this week due to sudden complications after his cancer returned for the third time. And, a part of me, has yet to even accept this news..

Beautiful people, whom I care for dearly, are suffering. And when I come to these points, to these weeks, in which life does not seem fair. In which, I feel as though, we've all fought, enough. Because, in truth we have. In which, I want all of these individuals' pain, and worry, and anxiety, to subside. I usually turn to someone. Not for answers, but maybe... for hope.

To another frizzy haired girl, with freckles, who articulately expresses, what I wish I could send, with my love, to all of you.

The rain has slowly and softly made its way through Boston this week, and will continue through the weekend, so, I found this poem very fitting.

Rain.
regen.

You walk. And suddenly the pavement's wet
and suddenly the green of the trees is new,
and a smell like that of burnt hay hits you in the face,
which, hot and pain, eagerly looked forward to the rain.

The grasses, which all dusty, tired, and weak,
already have bent down to meet the ground,
joyously see the swallow
flying near and suddenly seem filed with pride.

And you walk on.
And you walk on.
Walk lonely and alone
and know not whether you should laugh or cry.

And here and there, some rays of sun,
which shine - as if the rain were none of their concern.

- Selma Meerbaum-Eisinger

Fighting cancer, struggling with relationships, losing friends, stressed with future plans, with finances, with life, in general. We all have our ups and downs. The important thing to know though, is, no matter how much rain. No matter how much pain, Selma was able to see life, the way I want to. She was able to see those sun rays...in nature, in herself, in her friends, in life.


And my hope is, while I'm still here....




I continue to see and embrace those rays too.

Sending Love,

B