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

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

And she woke up....

I have lots to say, lately. But haven't been able to correctly put them into thoughts.

So, I wanted to share some good news. Very quickly, and after I process some things, share some more. As most of you know I was in a fog this last month. Not picking up the phone, not emailing, not really showing any sign of life.

My friends, endlessly came over to deliver milkshakes, and smoothies. My mothers, begging me to put on weight. My head, not in a good spot. But this weekend, I awoke.

I had a PET scan on Friday. Entering this PET, was something, of unknown territory, as this drug has made me so sick that I just, I wasn't sure what exactly I was hoping for.

The good news, was -- my drugs, were moved around. Meaning, lower dosage, more energy, other medications were added to help with side effects. It finally felt after an entire month of living among the dead, trapped in my own body, that I was able to move.

And, better news was, the PET scan revealed that most of my disease is gone. After only three weeks of being on the LBH589, the disease inside and outside of my spleen is gone. And the nodes in my upper chest that had an SUV level of 11-12 last month, have shrunk to 2's and 3's.

As most of you are probably jumping up and down -- the drug is working! The response is wonderful! Thank god! It IS all good news, do not get me wrong. I just have to be cautiously optimistic. After venturing through two FDA approved treatments so far, most likely, I will never be 'cured,' this disease will come and go, for years on end. So, although I will most likely receive a remission -- it could be for a few months or a year, and then we will have to look at another trial. But, it IS manageable. This is doable. And, a semi-normal life, is possible. With patience.

I continue to be thankful, that I respond to almost every drug that has been thrown my way. Some, others, are not so lucky. I am.

Lastly, I wanted to add, that this week, last year we lost a true Hodgkin's warrior, Anne-Marie Dunn. Last year on November 5th, AM, passed away. She had one of the those no-bullshit attitudes, and at the beginning of my journey gave me a lot of solid, clear-cut advice on life and this disease. For those of us who knew her, I just wanted to remind you to send some love, up to her, and to her family. It's important, to not forget, those who fought before us...

So kids,
Slowly, I'm opening my eyes again...
and waking up. with a rather fine PET scan in front of me.

Sending Love
to each and every one of you,

B