Learn, Change, Adapt, Move Forward.

I wanted to take a break from the fundraising bit, and write some things because, this is how I process, this is how you know how to support me, this is how I live, by writing (posting some, not posting others).

The last two months, or even this last month has held so much change that I am just bursting at the seams.  Not all has been wonderful, most, but not all.  I feel as though the decision of transplant has been a sudden one for most people to accept.  Here I was paddling along, upstream, and my bone marrow started to waiver a bit in December.  What we feared, came true.  My anti-allo ways had to somehow be flexible and although I was quite the woman on most cancer boards and forums that said 'no allo-transplants! not until you've exhausted all options' -- here I was, making the decision to probably receive an allo transplant.  None of it made that much sense.  It took time, it took a lot of processing, I was on the transplant page first, then my family followed but the transition was difficult.  An allo-transplant is something I wanted to face much later, and then came the MDS.

Truth be told, it was almost a blessing in disguise.  I'm not sure I would have ever pulled the trigger myself for an allo-transplant.  Why you may ask? Because of the risks, because of the friends I've lost, because of the complications.  However, with great risk as most of my fellow warriors knows comes great rewards, this one could come not only with new bone marrow, a cure for MDS, but also, somehow after all these years, I could potentially find a cure for my cancer -- who knew.   Who knew a second diagnosis would allow me to receive an allo transplant with my health insurance?  Who knew this second diagnosis would push me into making an allo transplant 'okay,' if you can't exhaust any more options.  Who knew... not many.

But there was one couple, who rallied for it.  They rallied for it even before I had made this decision, that was and is Brannan and Alex.  I spoke to this couple via facebook this year for a bit, before I officially met the bright, amazing, strong, ridiculously loving couple during a run-in at Doc O's.  It was here that they infused me with the thought of Seattle, and Alex and I and even O discussed the many treatments Alex had been on, especially the ones where he hallucinated and goodness what he was able to see on those drugs!  Somehow they laughed about it during that day.  I kept thinking... for a man who fought HL for almost thirteen years, thirteen years, had an allo-transplant a year out, and had a set of twin three year olds, he had more tenacity and chutzpah in his one finger than I had in my entire body.  His presence spoke positivity, and although there was still fatigue from the day (who isn't tired after a day with at O's?!), Brannan and him shined so brightly.

About a month later, Alex and I found ourselves in the hospital at the same time, same floor, but we couldn't see each other because he had an infection and my kidneys had shut down.  You never would've known though how much he had on his plate...

At every corner Brannan has offered her love and guidance in fundraising and experience for SCCA (Seattle) where they, and I will receive transplant.  At that specific day, during that specific time, Alex called my hospital room -- not to tell me how much pain he was in, or how he wasn't doing well, but to offer me support and to help me look through different lenses.  During this week I was especially frustrated because I did not seem to have rapport with the doctor I was assigned in Seattle, I was mentally stuck. I was so mentally stuck and I wasn't sure if Seattle or their doctors were the right place for me.  "You have to let that go....there are more important things to think about, you need to find someone who will support you, and move forward, let go..." I was so frustrated.  Not only with what the week leading up to my hospital visit had involved, but also because I was mentally stagnant and I my gut was telling me something needed to change.

In that one conversation with Alex, where he hardly shared any of his own physical pain or what he was experiencing, he told me to learn what I needed to learn about Seattle, change the things I didn't like (even if that required getting in someones face), adapt to it, and go, get on the move, move forward.  He believed, as another MDS and HL patient that this was the best scenario, and waiting too long for transplant was not a good idea.  He and Brannan believed that this was the best option, best choice, they were vocal and they told me so, and I will always feel privileged that he did.

I did not know Alex long, but I knew him long enough, as unfortunately he passed away leaving his wife and two sons behind this month.  It was a hard hit for those in the HL community, there is a hole where I see he should be with Brannan and his sons, and his Facebook support page (where you can find out information about his sons donations for their higher education here) showed the world, who he was through pictures, memories, stories, and the type of guy he was -- the the type of guy I got to see in only a visit and a meaningful phone conversation.  And I can't even imagine the gathering at his funeral, it must've been so many meaningful, loving people that came to say goodbye.

It didn't take long for me to see what type of people Brannan and Alex were and are.  And probably what their sons will be like, and everyone that they surround themselves with.  These are the type of people you strive to be, you wish you were, you hope that you can become.  They are more earth angels, ones, I never saw coming and I'm so glad they did at a time where I selfishly needed that push for transplant, to make that life-changing decision.

Although Alex is no longer here physically, I am a firm believer that spirits remain here, and we were connected if only for a short time for specific reasons.  Goodness, I wish it had been longer, for Brannan and those boys.  Goodness I wish it had been longer for his parents, and all those that loved him and knew him and saw him for years.  But goodness, I'm glad I got that visit, I'm so glad I got that phone call, and I'm so, so grateful that I knew the type of man he truly was and continues to be for so many out there. So many he's affected, influenced, and touched.

Some might say, aren't you scared of transplant?  Of course.  But Alex, as always made sure to establish that all us as individuals are different, and that we all take different paths and make different decisions. We learn, we change, we adapt, and then we move forward.  From anti-allo to now moving forward with this treatment, I feel him and Brannan around me, knowing that these earth angels influenced me in a way no one else could.  If anything, I'm more determined for myself, and for others we've lost to go through this process and to be here.  To continue remembering these warriors, to tell you about them, to honor them.  They are the reason I continue living, the Adrienne's, the Alese's, the Eric's, the Anne's, the Marsha's, the Alex's.... their words, their actions, their lives are the reason I am still here today.

So we do what we have to do, despite it all.
We learn, we change, we adapt, and we move forward -- for ourselves, and for them.

Here's to Alex, Brannan, the boys, Seattle, and the future.

Love and Light,
Bekah

...and exhale.

Every time I quietly rebound, even if it is just enough to go food shopping for one day, I am always in awe of this tiny body of mine.  I'm incredibly shocked how strong the human body is in general. And I am so grateful this has been the case this week.

Just last week my kidneys were in shut down mode and I could not get out of bed, nor hardly walk to the bathroom, or have enough energy to shower.  This time last week, I couldn't move. The poison I was feeding my body was obviously a little too much.  It's amazing what a few days can do.

Yesterday and today have just been life changing.  Although I strive for so much balance in my life, this disease can make it incredibly difficult; as at times, my body feels so bi-polar.  One day I am cursing up at the heavens to allow me to have a pain free hour, literally just one hour.  Praying that I would give anything to not feel discomfort, pain, nausea, fevers, ect.  Then the next day, my legs carry me through my apartment, to whole foods, and on a walk in the park, with my normal chronic pain, but nothing compared to what I went through last week.

Today my house is now filled with a scented candle from my mother, hydrangeas, a fridge full of fresh food, and in my jewelry box lays a new beautiful, leafed-necklace I received from my partner, almost a token of victory after being released form the hospital.  One which made me cry like an infant, showing how grateful and vulnerable I am for these last forty eight hours.

My body is euphoric when it comes to this point of relief.  A point without drugs, without fevers, without hardly any medication to speak of.  And just like that, from feeling like the shit on the bottom of someone's dirty boots, my body, even if it is only for a few days, quietly, softly, rebounds.  

Normally, during these moments I call everyone I know and plan outings.  This round, I am stepping out of the ring and have decided I need to take whatever time I do have and focus on rebuilding and not setting myself up for failure. I tend to plan, only to cancel, which leaves me mentally exhausted and disappointed.  Finally, I think I am learning.

I write this post with the utmost hesitancy, since I know in a matter of days we could switch to another level of health.  If my body continues to stay strong and counts stable, then I am free until the 22nd where I will be meeting with O to discuss next steps.  But for today, the sun is shinning, I am eating, the house smells of beautiful scents, and I am prepping to cook a dinner for myself for the first time in weeks.

I've finally taken a breath, even if it is just for yesterday, today and hopefully tomorrow.  Quietly, I am cheering, as I can no longer describe the essence of how good it feels to look at that pool again, be sitting on the steps, and just breathing.  Maybe someday, I will get to the other side.

But for today, I'm just thankful to be above water and exhale. 

Here's to small victories. 

xoxo,

B.  

Endless amounts of thanks yous....

First, I apologize that this post has been so delayed.  Life, once again has taken a hold of me and I have been lost between internship, classes, cooking, working out, cheering on the SIXERS, seeing friends and spending time with my family and my partner.  I can't even begin to express how WONDERFUL it feels to have this 'normal' chaos of work, relationships, school, and a personal life.  So much better than complaining about cancer!

However, I truly would not be here experience what I do on a daily level, if it weren't for each of you, and each of those individuals who generously, and oh BOY do I mean generously contributed to these next three rounds of treatment.  My partner and I were not only shocked, but overwhelmed at the amount of individuals who stepped forward in all aspects of this treatment from LARGE donations in my Paypal account, to frequent flyer miles, and hotel time shares.  It was to say the least, the most beautiful form of kindness I have even been a part of.. and as I said, I was overwhelmed with a sense of love, and confidence from each of you, that this cause, this treatment IS worth it.  And truth be told, it is.

So, I want to take this time to greatly thank the woman of the hour who scheduled Rich and I to fly from PHL to HOU this first infusion round, the wonderful, the incredible Ms. Susie Laws.  This woman, did not even hesitate to donate her miles.  Not only was Susie selflessness to offer these miles, but she made our entire trip easier and the financial burden that had been put on our shoulders during these infusions completely diminished knowing that such kind souls as Susie, took the opportunity to help Rich and I.  So, my dearest Susie! I can never thank you enough for making this trip happen for Rich and I! I hope you realize how amazing of a woman you are, and we are so endlessly grateful for your kindness.  All my love to you, dear!

As for other amazing women, Ms. Jen Wilkens reached out to Ms. Linda Walsh, a kind soul, and from what I've heard a wonderful mom -- donated her hotel time share so Rich and I would be able to afford a Hotel close to Houston, and a very easily accessible location so we were able to wake up at a decent hour to then receive my infusion just minutes away. Linda, we are so grateful for such amazing kindness from strangers, and thank you from a very deep place in our hearts.

Lastly, obviously not least -- all of you, and I mean a TON of you, contributed gracious amounts of money to carry us through the next 4-5 months of treatment.  I wish I could send each of you a large bouquet of flowers or a big teddy bear to show you my thanks, but obviously that would be counterintuitive :) So here are a list of my biggest supporters who make MY life possible through their kindness...


Big, huge thanks to: Ms. Linda Davidson, Ms. Elaine Crouse, Ms. Shannon Tower, Mr. Patrick Cummings, Ms. Ruth Hendry, Rene Kegelman, Ms. Kaitlin Mallouk, Ms. Annette Armstrong, Ms. Jennifer Nelson, Ms. Patricia Hane, Ms. Sandra Bruce, Ms. Judy Kilty, Ms. Erin Mills, Mr. Stephen Distaso, Ms. Mindy Newman, Ms. Katy Cooper, Mr. Larry Lewis, Ms. Samantha McCauley, Mr. Ross Blumenthal, Mr. Charles Cavanaugh (who I am attempting to contact, so, Mr. C -- if you see this, please email me!), Ms. Barbara Bosworth, Ms. Daphna Brown, Ms. Roe Blumenthal, Ms. Liz Schroeder, Ms. Rachel Coulshed, Ms. Ashkan Rahmati, Ms. Jen Berry, and last but certainly not least the Crail Family!

I thank you, my good dear friends, acquaintances, fellow HL warriors, strangers whom I've never met, I thank all of you for making these treatments a reality for me, and to have the ability to bring a care giver with me to handle the stress and chaos of treatment.

I am forever in debt to all of you, and can honestly, never thank you all enough.
Just know, you are creating normalcy and life for someone who is living each moment as it is her last.
And I will continue to do that, not only for myself, but to honor those who have contributed to this treatment cause.

Next Round will happen in early March! And we are mentally and financially ready!
Sending Love and Light,

B.

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. 

So this is the new year...

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

 .Resolutions.

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

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

(especially, be more proud of my accomplishments)

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

Luckily, it's coming back :)

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

I should show it!

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

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

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

xoxo,
B!

Milestones.

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

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

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

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

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

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

Milestones

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

• First remission in three years. 

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

Six months ago: 

 

opposed to, today:

 

 

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

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

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

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

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

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


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

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

Humbled.

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

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

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

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

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

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

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


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

I cried.

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

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

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

Sending Love,

B

Glorious.

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

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

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

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


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

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

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

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

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

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

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


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

Sending Love,
B

I'll take it!

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

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

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

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

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

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

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

Sending Love,

B

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

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

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

Grateful

I have learned, that no matter how much pain or discomfort you are in. You can still maintain a point of being grateful. And today, since my blood levels were somewhat in the 'good' category. And, I had a few extra things to smile about. I wanted to share them.

Even though, everyday, I write down at least five things I'm thankful for. I don't share them too often, and today, I just felt, they needed to be shared.

Today, I am grateful for:
* Good blood levels
* Some bad-ass CD's i received in the mail from Jessie O , with songs that have never made me cry, in such a soul, clenching, beautiful way. I'm so grateful for you J.
* Filling my two cavities. THANK GOD. no more mouth pain.
* The colors in Boston today.
* The dental assistant that told me I have seriously the cutest hair and glasses she's ever seen.
* The young man that asked me out to coffee, lets re-state that, the hot young man, that asked me out to coffee. In which I politely declined. (I need some Bekah-time boys, sorrrry)
* The silver, absolutely, jaw-dropping, beautiful bracelet that Darcy sent me, engraved. Which again, made me cry. Sisters, my love, that we are. I'm so grateful for you, d.
* My friends in Boston who are bringing me milkshakes, slurpees, and smoothies whenever I allow them. and call and call and call.
* Lowering my dose of drugs! so I can hopefully have a life this week.
* Alison and Adrienne, for showing me, I can do this. I can do this. I can, and will do this.
* Crepes, with brie and mushrooms from coolidge corner.
* A family, who really, truly, cares.
* My moms. my moms. my moms. who fight about how to hang a curtain in my apartment, but will drive six hours to help clean my living area, so I don't feel overwhelmed.
* Cards from women, who make this world worthwhile
* Wearing a scarf around my neck, this fall, and not on my head.
* Finding rock bottom, and still being able to look up.

To cut through the bull, last week was possibly one of my darkest weeks I've had in the last two years. But, I'm slowly climbing out of it. My drugs were lowered, hoping that my blood levels will somewhat allow me to function outside of my lovely apartment. As well as a PET scan has been scheduled for October 31st, to see... what? To see what's going on in this cute body of mine.

For now, though,
let me just be grateful.

This week marks six months post transplant,
and although I am not cured,
I am
still here.

<3 B

Sometimes just surviving is a noble fight...

As most of you know, I like to keep tabs on other cancer survivors and warriors who have somehow touched my life. Little, eight year old Michael, has certainly been one of these kind souls. I can't describe the kind of kid, that Michael is, only that he had more fight in him, than most of us do as an adult.

Early April of this year, Michael,
was diagnosed with type B-cell lymphoma.

After months of fighting off blood infections and cancer. Michael and his family, had decided a few days ago to hold off treatment, and let this vicious disease run its course. And, not put Michael, through any more pain.

On days like today, where I lay in bed, and find myself in pain from a trial. Or want to curse the heavens for my hand in life. Or when friends or family members complain about the difficulties in their life. I want to redirect my thoughts, your thoughts.

Michael passed away today. From what I can tell of how his mother spoke of him, he was an incredible kid, with a huge heart, and a fighting spirit. And just because the cancer overtook his body, it does not mean it changed his meaning or purpose on this earth.

So I ask you, on days, you don't want to get out of bed.
On days, when life just seems too hard.
On days, we want to give up -- because we all have them.
Just know, we should keep going, we should keeping moving, because we can.

If you have time, leave a message for Michael's mom on their caringbridge site.
Losing a child is probably the most heart breaking situation I can think of, I know she'll appreciate your support.

<3 B

Jennifer Willey

Another Hodgkin's story you should read up on is, Jennifer Willey.

Jennifer is 29 and is one of those true, true, cancer warriors. That has undergone incredibly intense amounts of treatment from standard chemo, Auto and Allo transplants, and now fights for her life everyday. Trying and succeeding in finding the beauty of life, even though she hardly ever leaves her home. And has breathing problems, as well as GVHD (graft verse host disease). She is another kind, warm, brilliant soul and light in the darkness that is cancer.

Recently, her mother, Vi Willey, was interviewed for this article, that I wanted to share with all of you "mothers" out there. These two women combined are pretty powerful. And their strength is overwhelming.

I hope you can take the time to read over the article, Jennifer's Journal, and hopefully leave her a nice comment, to cheer her on.

Sending Love,

B