...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.  

let's go, twenty thirteen.

Since November, I celebrated and survived packing, moving, unpacking, holidays in a new city, a case of face-shingles, a trip to New England, celebrating a good college friend's wedding, new years, and prepping for my first interview.

The year is starting off with a huge and exciting bang, and an ESR/SED rate of SIX.  Normalcy is starting to set in again, and goodness it feels so good.  Here's to lucky (twenty) thirteen with lots of health and happiness!

The beginnings of our new home..

My crazy shingles while packing up my old apartment.  

It's NEVER dull being a cancer patient :)

For HLers: If you suspect any form of odd bumps/shingles, make sure to call your onc immediately. 

Thankfully this cleared up within three weeks... 

Thankfully, I was able to put on a good face for the wedding 

since it all cleared after some quick emergency doctor visits and meds!

New Year's Wedding!

One giggly, amazing couple 

College loves..

Here's to remembering and honoring those that we lost in twenty twelve,
and celebrating life to fullest in their memory, during twenty thirteen.

love,
b!

Time continues to fly...

If you are reading this you are quite aware that I've unfortunately had to set my blog to private settings.  This is just due to some professional privacy right now, and I apologize -- I am hoping by the fall I will be able to make this public once again.

Time has completely flown by, and somehow I find myself facing the beginning of June.  My grad program/internship ends at the end of July.  And I am hoping (sending out at least 50 resumes a week!) to nail down a job by the fall.  But lets bring you all up to date.

• The scans in Texas in May were stable -- we will continue with the EBV+ Trial, and I will fly down there at the end of June to receive my next dose!

• My disease and graduate school/graduation circumstances have been in several articles. Take a look!
• With being three credits shy in May (I finish my degree in July), my school would not allow me to participate in the May commencement, so article A came out: College Rigid on Cancer Patient's Request
• With publicity, an outpour of support, calls and emails from around the country, Chestnut Hill College then reversed their decision to let me walk, and article B came out: A College's Change of Heart
• In addition, the President of CHC also sent out a Press Release  to students, alumni, and every single person who composed an email to overturn this policy
• Then, Higher Ed Magazine got wind of Chestnut Hill College's rigid policy and lack of flexibility with students of disabilities/illness and came out with Article C: Philadelphia Student with Cancer Allowed to Attend Graduation
• And then... this happened :) 

In the end, I was able to walk with my class and not have to wait until May of 2013 to walk.  I receive my degree on July 25th of 2012.  And I could not be any happier!  Here's to small and large milestones, while still walking with cancer.

In other news, I just wanted to take a moment to send my love and support to the Lewis family.  Ms Carrie and Andrew Lewis have been a crucial part of the HL community, and recently Andrew has unfortunately relapsed after his auto-transplant and is now forced to be part of the cool kids club (refractory HLers).  If you could, please send positive vibes and strength as both Andrew and Carrie (who have been a huge support to me in my own battle!) as they navigate through the trenches of refractory treatment and trials.  I know they will appreciate your support.

Sending love to each and every one of you,
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.

Check-in, Texas Style!

Just wanted to write a quick note that the January treatment round is finally complete, and we are finally home from our travels.  I have many, many thanks to give from those who donated frequent flyer miles, to a hotel time-share, to paypal account for our pecan pie fund, and so much else!  My family, my partner, and I were overwhelmed at the amount of outreach and generosity and we sincerely could never thank you all enough.  Since, I am still catching my breath from receiving treatment yesterday morning, and flying out last night, I will be posting a LARGE thank you response in the next few days of those who were involved with making this treatment round happen.

For now, just know, we enjoyed 24 hours (and possibly 8 of those hours) outside in the warm weather, with great food, good company and a quick treatment.

Just wanted to let you all know though, we are home, safe and sound! And can never thank you all enough for sending me to Texas to receive this treatment.   Here's to a zero-side effect treatment, friends around the world, the best BBQ in the country, great pecan pie, health and normalcy! 

Sending light and love to all of you,

B!

Catch me if you can...

As the spring semester wrapped up, my family and I were able to celebrate my little brother's graduation: all with good health, and amazing smiles.  This is just a taste of my upcoming, traveling, summer.  In the next month, I will be in several different states.  So, catch me if you can... more pictures, soon :)

This coming weekend: Boston!

Next week: NYC,  Ian Axel Concert +  (6 month) PET/CT scan at NYU

Memorial Day Weekend: CT for a college reunion and to celebrate Max's first birthday!

June 17th: Houston/EBV Trial 

June 25th: Dispatch Concert in Boston, then flying out to Chicago for a wedding.

July 1st: Houston/EBV Trial

Phew. My head is spinning just thinking about all of this. But, I can't wait for every second of it :) Also a huge, huge, HUGE thank you and ridiculous love and gratefulness this month go to my Uncle Jay, Aunt Bob, Thel and Wendy and Alison for financial help in transportation.  I can never thank you all enough for your help.  

So! Catching up on life is my overall goal this summer: and Jake's graduation started it off just right!

Remember to hug the ones you love today,

as thoughts, prayers and strength go out to my fellow refractory kids:  Andy and Anne

who are both in hospice care at the moment. 

Love and light to all of you,

B.